CCEL Report #10 | February 2019
CONVERSATIONS ABOUT CARE:
The Law and Practice of Health
Care Consent for People Living with
Dementia in British Columbia
2 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
ABOUT THE CCEL
e CCEL carries out scholarly research, writing, analysis, and community
engagement relating to legal and policy issues that impact us as we age. As part
of its work the CCEL consults with stakeholders, collaborates with community
agencies, and publishes legal, policy and practice resources, including recommen-
dations for law reform, and public information materials. e CCEL is a division
of the BC Law Institute, BC’s non-prot independent law reform agency.
ABOUT THE ALZHEIMER SOCIETY OF B.C.
Families across British Columbia are aected by Alzheimer’s
disease or other dementias. e Society’s vision is a world
without Alzheimer’s disease and other dementias, and that
world begins with a more dementia-friendly society, where people aected by dementia are acknowl-
edged, supported and included. Working in communities throughout the province, the Society
supports, educates and advocates for people with dementia, as well as enabling research into the
disease. As part of a national federation, the Society is a leading authority on the disease in Canada.
is project was generously funded by
the Law Foundation of British Columbia.
DISCLAIMER
The information and commentary in this publication are not oered as legal advice. The document refers only to
the law at the time of publication, and the law may have since changed. BCLI does not undertake to continually
update or revise each of its publications to reect post-publication changes in the law.
The British Columbia Law Institute and its division, the Canadian Centre for Elder Law, disclaim any and all respon-
sibility for damage or loss of any nature whatsoever that any person or entity may incur as a result of relying upon
information or commentary in this publication.
You should not rely on information in this publication in dealing with an actual legal problem that aects you
or anyone else. Instead, you should obtain advice from a qualied legal professional concerning the particular
circumstances of your situation.
© 2019 British Columbia Law Institute
The British Columbia Law Institute claim copyright in this publication. You may copy, download, distribute, display,
and otherwise deal freely with this publication, but only if you comply with the following conditions:
1. You must acknowledge the source of this publication;
2. You may not modify this publication or any portion of it;
3. You must not use this publication for any commercial purpose without the prior written permission of the
British Columbia Law Institute.
Contents 3
Contents
Note from the BCLI Chair 7
Acknowledgements 8
Executive Summary 10
List of Abbreviations 24
Glossary of Terms 25
1 | Introduction 28
1.1 Rationale for this Project 28
1.1.1 Dementia Impacts Many British Columbians 30
1.1.2 Medication Prescribing Raises Challenging Practice Questions 30
1.1.3 People Living with Dementia Confront Particular Stigma 33
1.1.4 Health Care Consent Rights are Fundamental to Liberty and Self-determination 33
1.2 Project Scope 34
1.2.1 Mental Health Law 36
1.2.2 Care Facility Admission Law 37
1.3 Project Methodology 38
1.3.1 Project Leadership 38
1.3.2 Consultation Process 39
1.4 Values Informing this Project 43
1.4.1 Recognition of Human Rights and Citizenship 43
1.4.2 Respect for the Autonomy and Agency of People Living with Dementia 45
1.4.3 Support for Inclusion in Decision Making 46
1.4.4 Appreciation of Lived Experience as a Knowledge Foundation 48
1.5 Structure of this Report 49
2 | Introduction to Dementia 51
2.1 Understanding Dementia 52
2.1.1 What is Dementia? 52
2.1.2 Types of Dementia 53
2.1.3 Stages of Dementia 55
2.1.4 Diagnosing Dementia 57
2.1.5 Dementia and Mental Capacity for Decision Making 58
2.1.6 Behavioural and Psychological Symptoms of Dementia 59
2.2 Medication for Treating Symptoms of Dementia 62
2.2.1 Medication for Memory Loss 64
2.2.2 Medications for Management of Psychosis and Other Behavioural Disturbances 65
2.2.3 Polypharmacy and Adverse Drug Reactions 68
4 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
3 | The Legal Framework Governing Health Care Consent in BC 69
3.1 What is Health Care? 70
3.1.1 Major versus Minor Health Care 71
3.1.2 Health versus Personal Care 72
3.1.3 Withdrawal of Care may be Health Care 72
3.1.4 Health Care Decisions versus Care Facility Admission Decisions 73
3.2 Informed Consent to Health Care 74
3.2.1 The Common Law Doctrine of Informed Consent 74
3.2.2 Informed Consent under the BC’s Health Care Consent Law 78
3.3 Who is Required to get Consent? 81
3.4 Mental Capacity 82
3.4.1 What is Mental Capacity? 82
3.4.2 Determining and Conrming Capacity 83
3.5 Exceptions to the Requirement to Obtain Consent 83
3.5.1 Incapacity 83
3.5.2 Emergency 84
3.5.3 Preliminary Examination 84
3.6 Supported Decision Making 85
3.7 Substitute Decision Making 88
3.7.1 Types of Substitute Decision Make 88
3.7.2 Decision by Advance Directive 92
3.7.3 Substitute Consent Cannot be Provided 93
3.7.4 Ranking of Substitute Decision Makers 94
3.7.5 Duties of a Substitute Decision Maker 94
3.8 Intersections with Mental Health Law 97
3.8.1 British Columbia’s Unique Mental Health Legal Framework 97
3.8.2 Comparison with Other Canadian Jurisdictions 99
3.8.3 Involuntary Committal of Adults Living with Dementia 100
3.9 Review of Health Care Decisions and Access to Justice 102
3.9.1 Review Bodies 102
3.9.2 Access to Legal Aid 111
3.9.3 Capacity to Retain and Instruct Counsel 112
4 | Consent and Chemical Restraint 115
4.1 The Law of Restraint in BC 116
4.1.1 Common Law 116
4.1.2 Statutory Regime Governing Restraint in Long-Term Care 116
4.2 Comparative Research on Restraint Law and Policy 122
4.2.1 Restraint in a Mental Health Setting 123
4.2.2 Restraint in a Long-Term Care 124
Contents 5
4.3 When is Medication a Form of Restraint? 135
4.3.1 Denitions of Chemical Restraint—Health Care Perspective 135
4.3.2 Legal Denitions of Chemical Restraint 137
5 | The Institutions and People Involved in Health Care Consent 140
5.1 Health Care Institutions and their Governing Statutes in BC 141
5.1.1 Community Care 141
5.1.2 Assisted Living 142
5.1.3 Long-term Care 142
5.1.4 Acute Care 144
5.1.5 Palliative Care 144
5.2 Health Care Professionals and Sta Who Provide Care to
People Living with Dementia 144
5.2.1 Physicians and Surgeons 146
5.2.2 Nursing Professionals 148
5.2.3 Health Care Assistants 153
5.3 Physician Remuneration in BC 154
5.3.1 Fee-for-Service Billing 154
5.3.2 Alternative Payment Program 156
6 | Consultation Findings 157
6.1 Health Care Professionals and Sta 158
6.1.1 Health Care Consent Practice 158
6.1.2 Knowledge of Health Care Consent Law 163
6.1.3 Barriers to Informed Consent 165
6.1.4 Advance Planning 166
6.1.5 Access to Justice 167
6.1.6 Anti-psychotics, Chemical Restraints and Consent 168
6.1.7 Patterns Identied Related to Specic Groups 170
6.1.8 Mental Health Act and Care Facility Admissions Procedures 171
6.2 Focus Groups with Community Stakeholders 173
6.2.1 Health Care Consent Practice 173
6.2.2 Barriers to Informed Consent 176
6.2.3 Anti-psychotics, Chemical Restraints, and Consent 176
6.2.4 Mental Health Act and Care Facility Admissions Procedures 177
6.3 Summary 178
6.3.1 Findings Related to Practice 178
6.3.2 Legal Issues and Law Reform 180
6.3.3 Gaps in Knowledge of the Law 182
7 | Discussion and Recommendations 183
7.1 Creating Greater Clarity and Consistency in the Law 184
7.1.1 Health Care Decision Making Rights and Responsibilities 185
6 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
7.1.2 Hospital and Care Facility Use of Restraints 196
7.2 Supporting Best Practice in Health Care Consent 204
7.2.1 Professional Development and Education regarding Health Care Consent Law 206
7.2.2 Assessing Incapability to Consent to Health Care 210
7.2.3 Documenting Informed Consent to Treatment 212
7.2.4 Understanding Dementia and Supporting Capacity 215
7.2.5 The Role of the Mental Health Act in Treating People Living with Dementia 218
7.2.6 Practice Support for Sta 222
7.3 Addressing Systemic Barriers to Informed Consent 224
7.3.1 Stang Composition and Levels in Long-Term Care 224
7.3.2 Physician Remuneration 227
7.3.3 Participation of Marginalized Communities in Health Care Decision Making 229
7.4 Enhancing Access to Legal Information and Representation regarding
Health Care Consent Rights 232
7.4.1 The Right to Review Health Care Consent Decisions 232
7.4.2 Legal Representation 235
7.4.3 Knowledge of Health Care Decision Making Rights and Responsibilities 240
Appendix A | List of Recommendations 244
Appendix B | Table of Key Informants 252
Appendix C | Key Informant Questions 255
Appendix D | Survey of Family Caregivers 257
Endnotes 266
Principal Funders in 2018 289
Note from the BCLI Chair
Note from the BCLI Chair 7
Conversations about Care is our rst collaboration with the Alzheimer Society of B.C. Capacity issues
have been at the heart of many previous projects of the British Columbia Law Institute and the
Canadian Centre for Elder Law. e Health Care Consent Project was our rst opportunity to focus
specically on the experiences of people living with dementia.
is project examined the laws governing health care consent for people living with dementia in
British Columbia. It also went a step further to explore policy and practice, particularly in long-term
care facilities, where some of the most vulnerable members of our communities reside.
is report includes 34 recommendations. ey address law reform, access to justice and legal aid,
health care professional legal education, and systemic barriers to informed consent. e recommenda-
tions were developed by an inter-disciplinary advisory committee, and informed by both legal research
and consultation. As part this project we spoke with a broad range of stakeholders, including people
living with dementia, family caregivers, and professionals who deal with health care consent as part of
their work. e recommendations invite the Government of BC, health professional regulators, and
other key stakeholders in BC to consider how to develop the most robust legal framework and support
best practice.
On behalf of the boards of directors of the British Columbia Law Institute, I would like to express
gratitude to Project Advisory Committee members for the time and expertise they contributed to this
challenging project. e recommendations contained in this report have the full support of all fteen
members of the Project Advisory Committee. Achieving consensus across such divergent perspectives
was dicult, and committee members truly rose to the challenge. It is our hope that the process of
working to address everyone’s concerns has allowed us to develop a robust list of recommendations
that will make a dierence for people living with dementia in this province.
omas L. Spraggs
Chair,
British Columbia Law Institute
February 2019
8 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Acknowledgements
e Canadian Centre for Elder Law and the Alzheimer Society of B.C. (the Society) would like to
acknowledge the work of the Health Care Consent Project Advisory Committee. Members of the
Committee generously shared their time and expertise. In addition to participating in committee
meetings to help us better understand the issues and develop meaningful recommendations, many
members connected us with key informants, noted up draft versions of the report, identied important
resources, and participated in presentations. e project took longer than anticipated, and our commit-
tee members stayed with us for the full journey toward report completion.
We would like to thank all the stakeholders who participated in consultation. People living with
dementia patiently described their concerns to us. Family caregivers took time out of their delicately
balanced schedules of work and caregiving to help us understand the strengths and weaknesses of the
current regime. Health care professionals and others who deal with informed consent in their work
shared honestly, and sometimes made time for multiple conversations with us. We are also grateful for
Inclusion BC for inviting us to speak with some of their families and advocates, and for Alzheimer
Society of B.C. Resource Centres across the province for hosting focus groups. is report, being
grounded in lived experience, would have been impossible without all this support.
Many organizations invited us to talk about health care consent over the lifetime of this project.
ank you to:
• Providence Health Care, particularly, Dr. MaryLou Harrigan;
• Simon Fraser University Gerontology Program, particularly, Dr. Gloria Gutman;
• BC Care Providers Association;
• e BC Ministry of Health Provincial Home Health Advisory Committee;
• Fraser South Directors of Care Group, particularly, Jane Devji and Jennifer Ladesma;
• Canadian Bar Association BC, Elder Law section, particularly, Jaqua Page;
• e BC Health Regulators;
• e AGE-WELL Network;
• Gloria Puurveen, Postdoctoral Fellow, Alzheimer Society of Canada and Michael Smith
Foundation; and
• e Continuing Legal Education Society of BC.
Acknowledgements 9
is project was made possible by a grant from the Law Foundation of British Columbia. We are also
grateful to Norton Rose Fulbright for hosting committee meetings. ank you to those members of
the community whose images grace the pages of this report.
Finally, we are grateful the sta of the CCEL and the Society who helped this report come together.
BCLI Research Lawyer Rachel Kelly spent almost two years of her work life researching health care
consent issues for us. CCEL National Director Krista James managed the project, led consultation,
and wrote the report. Sta Lawyer Valerie LeBlanc assisted with minutes. BCLI Executive Director
Kathleen Cunningham provided ongoing guidance. Oce Manager Elizabeth Pinsent provided
administrative support. Amy Cox conducted social science research and took notes at a number of
focus groups. Summer students Gurinder Cheema assisted with citations, and Allison Curley tran-
scribed interviews. We are also enormously grateful to the following volunteers who transcribed hours
and hours of key informant interviews: Alexis Haig, Tasha Lorenzen, and Catrina omas.
Barbara Lindsay, Director, Advocacy & Education and Marketing & Communication, Alzheimer
Society of B.C. chaired committee meetings, and supported the project from birth to completion.
Jennifer Stewart, Manager, Advocacy & Education for the Society, provided guidance and support.
Eva Boberski, Provincial Coordinator, Information for the Society, organized consultation focus
groups. Natalie North, Coordinator, Marketing & Communications for the Society, reviewed the
entire report, and organized photography with the support of Daisy Couture, UBC Co-op student
for the Society. Jasmine Chauhan, UBC Co-op student for the Society, provided additional support.
10 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Executive Summary
PROJECT RATIONALE
Respect for the right to make informed decisions about health care treatment is deeply important to
many of us. Medication can have a signicant impact on quality of life, pain management, and life
expectancy, and decisions in relation to health care engage fundamental values and personal bodily
integrity. e notion that someone else can require us to take medication may be welcome to people
who trust the family members and health care providers who oversee their care; for others, this pros-
pect may be terrifying. Regardless, people with capacity issues that impact their ability to make their
own decisions about health care reect a vulnerable population. e recognition of their legal rights
is of great importance.
In recent years, there has been increasing interest in medication practices involving older people,
including polypharmacy, o-label use, over-medication, and excessive prescription of anti-psychotics.
Many tools have been developed to support enhanced practice in these areas. However, while informed
consent is a key aspect of appropriate prescribing, there has been almost no attention to consent in
the context of law, policy and practice discussions of health care for older people. Debate and dialogue
regarding health care often belie a well-meaning view of older people as passive recipients of care at
the expense of consideration of their right to make their own decisions.
While health care consent law applies to everyone, the issue raises particular challenges in relation
to people living with dementia—not only because dementia can impact mental capacity, but also
because people living with dementia confront assumptions that they are mentally incapable of making
their own health care decisions, regardless of their actual abilities. Most forms of dementia are more
prevalent among older people, and our population in British Columbia is aging. As a result, health
care consent for people living with dementia will become an increasingly important legal and health
policy issue.
is project on health care consent was developed to explore the law, policy, and practice with respect
to health care consent for people living with dementia in BC. Conversations about Care examines
law and practice in concert both to ensure legislation reects the realities of practice, and to consider
whether the barriers to good practice are a problem related to the substance of legislation, its imple-
mentation, or a combination of both. e goal is to ensure our legal framework in relation to informed
consent is suciently robust to protect the rights of people living with dementia and their legal substi-
tute and supportive decision makers for health care, and to enhance and clarify the law where needed.
Executive Summary 11
PROJECT SCOPE
is project examined laws which impact health care consent in BC. We reviewed legislation governing:
• Informed consent to health care;
• Substitute and supported decision making for health care;
• Medication use in long-term care; and
• Involuntary committal for psychiatric treatment.
e goal of the project was to consider the law in practice. erefore we also studied the broader
framework that impacts the relationships between people living with dementia and their health care
providers, and the right and ability to request a review of decisions related to health care treatment. As
a result this approach, our project scope also included:
• e regulation of health care professionals and sta in BC;
• Codes of ethics, practice guidelines, and other documents developed by the various
regulatory bodies and practice associations in order to support best practice;
• Education and professional development of health care professionals and sta in relation
to health care consent;
• Review fora available to people who wish to challenge a health care treatment decision, or
a nding that they are incapable of consenting to treatment; and
• Access to legal assistance in relation to health care decision making and advance planning
for health care.
PROJECT LEADERSHIP
is project was a collaboration of the CCEL and the Alzheimer Society of B.C. (the Society)
grounded in the following four shared values, which we discuss in Chapter 1:
• Recognition of human rights and citizenship;
• Respect for the autonomy and agency of people living with dementia;
• Support for inclusion in decision making; and
• Appreciation of lived experience as a knowledge foundation.
12 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Research focus and recommendations were developed in partnership. Although the CCEL wrote the
report, the Society participated in many presentations on the work. e Society also recruited people
living with dementia and family caregivers to participate in consultation, and provided photographs
to illustrate people living with dementia and their family caregivers.
As with many CCEL projects, a volunteer Project Advisory Committee provided ongoing guid-
ance regarding research and consultation methodology, key stakeholders, and recommendations to
ow from research. Committee members are listed in Chapter 1 of this report. e interdisciplinary
committee met eleven times over the lifetime of the project, and worked with CCEL sta outside
of meetings to assist with the development of recommendations that could be supported by all the
members of the committee.
RESEARCH METHODOLOGY
Although sta conducted legal and social science research to inform the writing of this report, consul-
tation formed a signicant part of research. Consultation included:
• 65 key informant interviews with people whose work involves consent to health care for
older people living with dementia;
• 13 focus groups with people who shared their personal experiences with medication and
consent. We met with 14 people living with dementia, and 44 family caregivers;
• 8 conference and community presentations where we integrated a question and answer
session oering health care professionals and sta an opportunity to identify their
concerns regarding the law and practice of health care consent; and
• An online survey of family caregivers, to which 28 people responded.
Many recommendations ow from our analysis of the legislation impacting health care consent in
BC. However, most of the recommendations were developed in response to issues identied through
consultation with people living dementia, family caregivers, health care professionals, and other people
who engage with health care consent in the context of their work or personal lives. As noted in the
discussion of shared values informing this project, this report is grounded in the lived experience of
people who see informed health care consent occurring in community.
As a result, consultation occurred early on in the project, and helped to shape the issues we addressed.
Reecting this approach, quotations from stakeholders appear throughout this report. e quotations
do not reect the views of the CCEL and the Society: in some places they highlight challenges and
concerns; in others they reect prevalent misunderstandings of the law which must be addressed.
Executive Summary 13
REPORT STRUCTURE
is report contains 7 chapters:
• Chapter 1 introduces the project rationale, scope, and methodology.
• Chapter 2 describes dementia, and medication which may prescribed for people living
with dementia.
• Chapter 3 sets out health care consent law in BC, including the dierent types of
supportive and substitute decision makers, and their rights and duties. We also discuss
avenues for challenging health care decisions, decision making authority, and incapability
assessments, and identify the overlap between health care consent and mental health law
for people living with dementia.
• Chapter 4 describes the law governing use of restraints in long-term care, and the
meaning of a chemical restraint.
• Chapter 5 identies the people and institutions who are involved in providing health care
to people living with dementia. We review the regulation of health care professionals and
sta, and discuss their education regarding health care consent.
• Chapter 6 summarizes what we learned from consultation with people living with
dementia, family caregivers, health care professionals, and other stakeholders who engage
with health care consent issues in their work.
• Chapter 7 brings together legal research and consultation ndings for discussion of
34 recommendations aimed at enhancing compliance with, or improving, health care
consent law in BC.
e remainder of this Executive Summary outlines ndings and recommendations. Appendix A
contains a complete list of the recommendations.
FINDINGS AND RECOMMENDATIONS
BC is one of the few provinces in Canada to have developed a comprehensive health care consent stat-
ute that codies the common law doctrine of informed consent. e Health Care (Consent) and Care
Facility (Admission) Act (HCCA) claries the rights and responsibilities of health care providers and
temporary substitute decision makers for health care. e statute conrms the principle that decision
making autonomy is paramount, and that neither a best interests approach, nor paternalist thinking, is
relevant to the decision making of adults who are capable of making their own health care decisions.
BC is also one of the only jurisdictions in the world to have developed a framework for supported
health care decision making, through the Representation Agreement Act (RAA).
e HCCA provides a solid foundation for health care consent law in BC. However, there are number
of areas where the law and practice could be improved. is report brings together legal research and
consultation to identify recommendations aimed at enhancing compliance with, or enriching, the law
14 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
regarding health care consent in BC. Chapter 7 of the report, which is divided into four parts, includes
recommendations which aim to:
1. Create greater clarity and consistency in the law;
2. Support the best practice of health care providers with respect to health care consent;
3. Address systemic barriers to informed consent; and
4. Enhance access to legal information and representation regarding health care
consent rights.
Law Reform Recommendations: Creating Greater Clarity and Consistency
in the Health Care Consent Law
Part 1 includes legislative amendments which aim to:
• Clarify or enhance the rights of people living with dementia and their substitute decision
makers to participate in health care decision making; and
• Remedy inconsistencies between various statutory provisions which are relevant to health
care decision making for people living with dementia.
Most of the recommendations in this Part 1 relate to the HCCA, the Community Care and Assisted
Living Act (CCAL Act), and one of the regulations created pursuant to the CCAL, namely, the
Residential Care Regulation (RC Regulation). However, we also make recommendations that impact
the Mental Health Act (MHA), RAA, the Patients Property Act (PPA), and the Adult Guardianship Act.
Part 1 is divided into two sections which address:
• Health care decision making rights and responsibilities; and
• Use of restraints in long-term care
Health Care Decision Making Rights and Responsibilities
(Recommendations 1-7)
Health Care (Consent) and Care Facility (Admission) Act
Recommendations 1-3 of this section consider reform of the HCCA. Currently the Act creates a
framework which:
• Imposes an obligation on health care providers to obtain timely informed consent prior
to treatment;
• Codies the right to revoke consent;
• Starts from a presumption that all adults are mentally capable of making their own health
care decisions;
1
Executive Summary 15
• Includes a standard for capacity to consent to health care;
• Requires health care providers to consider if an adult has capacity as part of the
consent process;
• Delineates the kinds of information a health care provider is required to provide such that
consent will be informed;
• Codies the right to ask questions, and receive answers about proposed health care;
• Sets out exceptions that permit emergency treatment and assessment without
prior consent;
• Develops a scheme for substitute decision making where an adult does not have capacity
to make a decision regarding proposed treatment; and
• Creates a mechanism for documenting instructions regarding possible future treatment in
the form of an advance directive.
Two elements we concluded were not adequately addressed within the statute are:
• Recognition that capacity is decision-specic; and
• Incorporation of supported decision making.
Both Project Advisory Committee members and a number of key informants conrmed that good
practice requires timely consideration of a person’s capacity. However, many stakeholders noted that
incapability assessments do not occur as often as they should, and that health care providers often
presume lack of capacity for people living with dementia. Although the capacity standard for health
care treatment decisions in the HCCA links capacity to understanding of the proposed treatment, the
statute would be improved by stronger language recognizing that capacity can vary. Such language is
found in other modern health care consent statutes in Canada.
Both legislation and consultation conrmed that in non-emergency situations health care decision
making is a process that requires dialogue. Some people living with dementia may not be able to make
their own health care decisions independently, or may have communication diculties; however, they
may still have the capacity to meaningfully participate in health care decision making—particularly if
they receive support from a person they trust.
Health care professionals, people living with dementia, and family caregivers all characterized the
engagement of supportive (and non-abusive) family and friends as best practice. Although BC law
recognizes supported decision making for health care through the RAA, key informants indicate that
representation agreements are not widely used in health care settings. People living with dementia
expressed frustration about circumstances in which the support of the person they trust was not avail-
able because health care sta had separated them in order to provide care or assess health care needs.
e HCCA is currently silent regarding supported decision making. It recognizes the right of people
with capacity to make the health care decisions to participate in case planning and decision making;
people with capacity issues have no right to participate.
16 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
We recommend that the HCCA be amended to include language that:
1. Recognizes that capacity can vary in the following manner:
• A person may be incapable with respect to some decisions regarding treatment, and
capable with respect to others; and
• A person may be incapable with respect to a treatment at one time, and
capable at another.
2. States that every adult, regardless of capacity, has the right to:
• Receive support in decision making provided by a family member or friend whom
they trust, if they choose to do so; and
• Be involved to the greatest degree possible in all case planning and decision making.
Some people living with dementia are involuntarily committed under the MHA. Section 2 of the
HCCA excludes people who have been involuntarily committed under the MHA from the benet
of any of the health care consent rights provided for in the HCCA, in terms of psychiatric treatment,
regardless of their capacity to make health care decisions. e combined impact of section 2 and the
deemed consent provisions of the MHA are that neither the older person, nor their substitute or
supportive decision makers for health care, is entitled to participate in decision making regarding
psychiatric treatment. We recommend the Government of BC consider amending the HCCA such
that the right to support, and the right to participate in case planning and decision making, apply to
all adults, including people currently excluded by the combined impact of section 2, and the deemed
consent provisions of the MHA.
Community Care and Assisted Living Act and Residential Care Regulation
Stakeholders raised concerns regarding what health care can legitimately be consented to in advance
via care plans developed for long-term care facility residents. Care plans are mandatory for people
admitted for a period of longer than 30 days, and must include medication, as well as details regarding
any agreement with respect to the use of restraints. e HCCA permits health care providers to get
consent for many health care interventions in advance if they form part of a plan for minor health
care for health problems that the adult is likely to have in the future, based on their current health
conditions.
e RC Regulation states that the care plan must be developed with the participation of the resident or
the substitute decision maker “to the extent reasonably practical”. is language is inconsistent with
the unequivocal right to informed prior consent to treatment, and is confusing, as an exception for
urgent treatment already exists. is language raises particular concern as many family caregivers with
whom we consulted shared experiences involving lack of prior consent to medication administered in
long-term care, and spoke about how challenging it was to get long-term care facility sta to nd the
time to speak with them.
To address their concerns, we recommend that the RC Regulation be amended to:
Executive Summary 17
• Clarify that informed consent of the resident—or the substitute decision maker if the
resident does not have capacity to consent—must be obtained prior to nalizing or
amending any aspects of the resident’s care plan that relate to health care treatment; and
• Require that care facilities maintain detailed policies on sta and health care professional
obligations with respect to health care consent and substitute decision making.
We also recommend the Residents’ Bill of Rights included in the CCAL Act—which must be displayed
prominently in care facilities—be amended to include clear language informing people in reasonable
detail of their health care consent rights.
Adult Guardianship Act and Patient’s Property Act
In BC there are three dierent kinds of substitute decision makers for health care created pursuant
to dierent mechanisms. e obligations of representatives, temporary substitute decision makers
(TSDMs) under the HCCA, and personal guardians, also known as committees of the person under
the PPA, are not consistent. Particularly:
• e representative has a duty to consult with the adult, and comply with current wishes;
• e TSDM has a duty to consult; and
• e committee (guardian) has a duty to involve the adult.
is inconsistency adds uncertainty to a legal framework that health care providers, people living with
dementia, and family caregivers already nd confusing. Further, it is not clear that the BC approach
to the duties of guardians is consistent the general principles contained in the United Nations
Convention on the Rights of Persons with Disabilities, which Canada ratied in 2010. Consequently,
we recommend reform of guardianship law be explored in order to bring greater consistency to the
statutory duties of all substitute decision makers for health care in BC.
Hospital and Care Facility Use of Restraints
(Recommendations 8-12)
All licensed long-term care facilities must comply with the RC Regulation, which sets out rules for
the use of restraints, including chemical restraints. e meaning of chemical restraint is not set out
in legislation; however, the concept includes some uses of medication, and the HCCA applies to all
medication use in long-term care. Based on research and consultation, chemical restraints are used to
address dementia-related behaviour that health care providers nd challenging to safely manage in
long-term care, such as physically aggressive behaviour.
Our review of the restraint provisions of the RC Regulation identied many inconsistencies with
HCCA and other legislation relevant to health care decision making, which creates a lack of clarity
regarding who may agree to the use of a restraint. We make a number of recommendations to enhance
clarity, and bring the RC Regulation into alignment with the robust rights set out in the HCCA.
We recommend foremost that the CCAL Act and the RC Regulation be amended to require that in
non-emergency situations, consent to the use of any form of restraint must be obtained in the same
manner as consent to health care under the HCCA. e RC Regulation provisions should include:
18 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
• A presumption of capacity;
• A requirement that the consent be informed;
• A hierarchy of substitute decision makers; and
• An independent decision maker of last resort, such as the Public Guardian and
Trustee (PGT).
We also recommend the RC Regulation should be amended to:
• Require consent of either the adult, or their substitute decision maker, when emergency
use of a restraint continues for more than 24 hours;
• Recognize the right of the adult, or the substitute decision maker, to revoke their consent
to the use of the restraint.
• Require that the resident’s substitute decision maker, if any, be informed of any emergency
use of a restraint as soon as possible after its use;
• Dene chemical restraint; and
• Include a requirement that long-term care facilities have detailed policy on the use of
restraints in both emergency and non-emergency situations.
Professional Development Recommendations: Supporting Best
Practice of Health Care Providers with Respect to Health Care Consent
(Recommendations 13-25)
Research and consultation indicated a need for enhanced understanding of the HCCA and related
legislation among health care professionals and long-term care facility sta, particularly with respect
to the following four topics:
• When are they required to obtain informed consent?
• How and when should they obtain consent from substitute decision makers?
• When should they contact the PGT, and how can the PGT intervene?
• When (if ever) can the MHA can be invoked to involuntarily commit a person living
with dementia?
Almost every key informant expressed the view that further education on health care consent law
would be helpful for their profession, or at their workplace.
e professional colleges play a key role in supporting the best practice of health care professionals.
Although the newly created BC College of Nursing Professionals has published practice guidelines to
support health care consent practice, the College of Physicians and Surgeons of BC has not. Instead,
it adopted the Canadian Medical Association (CMA) Code of Ethics. e Code contains a principle
which erroneously implies that physicians practicing in BC may make health care decisions for adults
2
Executive Summary 19
who do not have mental capacity, so long as their decisions are grounded in respect for known wishes
and best interests.
e College of Speech and Hearing Health Professionals, which did not have a practice guideline
on consent until recently, remedied this gap in 2018 by adopting the BC Ministry of Health’s Health
Care Providers’ Guide to Consent to Health Care as a clinical practice guideline. e guide is an excellent
resource; however, given our consultation ndings, it should be improved to address a number of areas
of confusion amongst health care professionals.
We make the following recommendations to support health care professional understanding of health
care consent law in BC:
• e College of Physicians and Surgeons of BC should disseminate to all members
materials aimed at supporting physicians to understand their obligations with respect to
health care consent and substitute decision making;
• e BC Ministry of Health’s Health Care Providers’ Guide to Consent to Health Care
should be amended to address language interpretation, supported decision making,
the requirement to obtain consent for non-psychiatric treatment where a person is
involuntarily committed under the MHA, and the role of the PGT with respect to health
care consent;
• e General Practices Services Committee Divisions of Family Practice and the UBC
Faculty of Medicine Divisions of Geriatric Medicine and Geriatric Psychiatry should
undertake educational work aimed at supporting physicians to better understand their
obligations with respect to health care consent and substitute decision making; and
• e BC College of Nursing Professionals should publish, and widely disseminate to all
registrants, material on a nurse’s informed consent obligations, with a particular focus on
the licensed practical nurse (LPN) and registered nurse’s (RN) role with respect to consent
to health care treatment prescribed by physicians in long-term care.
Although health care assistants (HCAs) are not regulated professionals responsible to obtain consent
to health care treatment, in long-term care they are the sta with the most day-to-day contact with
residents, providing care under the supervision of RNs and LPNs. HCAs receive their training in
colleges throughout BC and abroad. e BC curriculum is the responsibility of the Government
of BC. HCAs who work for publicly funded employers or facilities must be registered with the BC
Care Aide and Community Health Worker Registry (the Registry). HCAs also access information
on professional development through the Registry. Based on our review, it is not clear that the HCA
curriculum includes health care consent and substitute decision making, and, in particular, the HCA’s
role in the process. We recommend that:
• e BC Ministry of Health and the Ministry of Advanced Education, Skills and Training
review and amend the HCA Core Competency Prole (March 2014) and/or the HCA
Provincial Curriculum (2015) to ensure that HCAs receive training on health care consent
and substitute decision making; and
20 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
• e Registry develop an educational module for HCAs on health care consent and
substitute decision making.
In Part 2 we also make recommendations regarding the need to:
• Develop educational modules on incapability assessment with respect to health care
decision making and care facility admission;
• Amend College of Physicians and Surgeons of BC Bylaws to address documentation of
health care consent;
• Deliver training on dementia to all sta providing services or care to older people;
• Develop a best practice guideline for health care providers on engaging people living with
dementia in health care decision making;
• Develop a province-wide policy on whether and under what circumstances (if ever) the
use of involuntary commitment under the MHA is appropriate for older people living
with dementia;
• Track data and publish ndings on involuntary commitment for older people living with
dementia; and
• Increase resources available to all employees, physicians, and contractors to ensure they
fully understand their obligations with respect to health care consent and substitute
decision making.
Structural Change Recommendations: Addressing Systemic
Barriers to Informed Consent
(Recommendations 26-29)
Stakeholders identied a number of systemic issues that pose barriers to informed consent for people
living with dementia. Strain on time and resources were recurring themes of our discussions with key
informants, particularly regarding long-term care. Many health care professionals and sta felt they
were doing their best under very challenging circumstances, and that the system itself requires some
change in order to allow them to have meaningful and timely conversations about health care treat-
ment with people living with dementia, their family caregivers, and their substitute and supportive
decision makers. In Part 3 we recommend that:
• e provincial health authorities explore strategies for making social work services
more available in order to better support older people living with dementia, their
family members, and their supportive and substitute decision makers with health care
decision making;
• e Doctors of BC and the Ministry of Health collaborate to develop incentive payments
to encourage and support physicians to engage in robust conversations to support
informed, and undertake incapability assessments when appropriate.
3
Executive Summary 21
• e First Nations Health Authority, Indigenous Health within the Ministry of Health,
and Aboriginal Health leads within each of the other health authorities engage in
discussions with Indigenous communities in order to better understand and address
barriers to informed consent experienced by Indigenous people in BC; and
• e Ministry of Health develop a plan to expand access to language interpretation to
people living with dementia who reside in aliated or contracted long-term care facilities,
as well as their family members and supportive and substitute decision makers, and
improve awareness regarding the services.
Access to Justice Recommendations: Enhancing Access to Legal
Information and Representation regarding Health Care Consent Rights
(Recommendations 30-34)
The Right to Review Health Care Consent Decisions
Given the importance of the rights at stake, people who face a loss of health care decision making
autonomy require an accessible forum for challenging both ndings of incapability, and specic health
care decisions made by substitute decision makers. Both legal research and stakeholder consultation
identied a lack of procedural fairness rights and access to justice for people with capacity issues, and
people perceived as having reduced capacity, as a key problem facing people living with dementia.
In recognition of these barriers, BC previously had in place a Health Care and Care Facility Review
Board, which was dissolved in 2004. Research and stakeholder consultation suggests it is worthwhile
to consider bringing back a capacity and consent review tribunal for BC. Many of the details regarding
the appropriate system for BC are beyond the scope of this project focused on health care consent.
We recommend the Government of BC implement an independent non-court review mechanism to
enable people to challenge:
• Findings of incapability to consent to health care treatment;
• Choice of temporary substitute decision makers;
• Care facility admission decisions; and
• Decisions made by substitute decision makers with respect to the person’s health care,
including the use of restraints.
Legal Representation
In this report we discuss a range of legal avenues for challenging health care decisions and decision
making authority for people living with dementia who may have capacity issues. Most options require
an application to court. Legal aid is not generally available for advice or representation in relation to
such matters, other than a review panel constituted by the Mental Health Review Board; however,
the Legal Services Society does have some discretion to award funding in unique situations. We
recommend the structure of legal aid be amended to include funding for prompt legal advice and
4
22 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
representation regarding any legal action or proceeding that could remove or restore health care deci-
sion making autonomy, including:
• Applications pursuant to s. 33.4 of the HCCA, including capacity to consent to admission
to a care facility;
• Challenges to applications for a committee of the person pursuant to the Patients
Property Act; and
• Involuntary committals, and reviews of involuntary committals, under the
Mental Health Act.
e need for greater uptake for representation agreements for health care came up frequently in
consultation. A person wishing to make a representation agreement under section 7 of the RAA may be
unable to hire a lawyer because they lack capacity to retain and instruct counsel. In Conversations about
Care we reiterate a recommendation from the BCLI Report on Common-Law Tests of Capacity that the
RAA should be amended to provide that a person with capacity to make a representation agreement
with standard provisions under section 7 also has the capacity to retain and instruct counsel for the
purpose of advising on the agreement.
Knowledge of Health Care Decision Making Rights and Responsibilities
Some people living with dementia and their family members require a better understanding of their
rights and responsibilities as part of the health care consent process. Many health care professionals
and social workers expressed concern that substitute decision makers do not understand their role.
Although various agencies in BC are engaged in providing public legal education about health care
consent, and substitute and supportive decision making, the need for information is not currently
being met in BC. We identify the time of admission to long-term care as a useful moment to increase
awareness, and recommend that long-term care facilities be required to provide written educational
information on health care consent rights and substitute and supportive decision making rights and
responsibilities to both residents and their substitute or supportive decision makers.
Bearing in mind the low uptake of representation agreements for health care decision making in
BC, we also recommend that the Government of BC develop a comprehensive public education
plan regarding supported and substitute decision making for health care, including representation
agreements, and also including providing additional funding to support non-prot agencies to further
engage in this work. e development of the regime for representation agreements in BC was a signif-
icant achievement for BC. e gains are limited by the absence of comprehensive public education
in this area.
Executive Summary 23
IMPORTANT TOPICS OUTSIDE OF PROJECT SCOPE
Project sta and Advisory Committee members discussed the appropriate scope of research and
recommendations. In two areas we struggled to agree on appropriate scope. ey were:
• Mental health law; and
• Care facility admission legislation.
A number of family caregivers shared experiences involving people living with dementia being invol-
untarily committed under the MHA. Comments by key informants regarding rationale for committal
indicate that the act is sometimes being used in manner that is not consistent with the law. e impact
of use of the MHA is signicant: it results in a loss of the right to participate in decisions regard-
ing psychiatric treatment, regardless of capacity to make these decisions. In this report we include
two recommendations aimed at supporting practice under the MHA. We do not, however, make any
in-depth recommendations regarding reform of the MHA. is decision was made largely due to the
breadth of our consultation work, which addressed the use of the MHA for people living with demen-
tia only, but also because our Project Advisory Committee was divided on this issue. A number of
committee members felt very strongly that it was important for this report to include a call to repeal
legislative overrides on health care consent rights contained in the MHA; an equal number felt that
recommendations for mental health law reform were beyond project scope.
During the course of this project the Government of BC announced that it will be implementing the
long awaited care facility admission provisions of the HCCA. At the time of writing, implementation
has been further delayed to 2019, and regulations have not yet been published. Although care facil-
ity admission is intimately tied to health care consent—particularly for older people—we have not
reviewed the provisions in this study, largely because it is not possible to get an accurate picture of the
law in the absence of an opportunity to review the regulations.
Although the absence of legislation for substitute decision making for care facility admission in BC is
problematic—and indeed appears connected to why the MHA is sometimes being invoked for people
living with dementia—Project Advisory Committee members expressed a variety of perspectives on
the legislation as it is currently written. Some members were greatly concerned that the care facility
admission provisions do not adequately respect either the wishes or the liberties of vulnerable adults.
Care facility admission legislation may have a signicant impact on the lives of older people in BC. e
CCEL and the Society welcome the opportunity to comment on the legal framework for care facility
admission when the regulations are available for review.
24 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
List of Abbreviations
AGA Adult Guardianship Act
APP Alternative Payment Programs (physician remuneration funding model)
BCLI British Columbia Law Institute
BPSD Behavioural and Psychological Symptoms of Dementia
CCAL Act Community Care and Assisted Living Act
CCAL Reg Community Care and Assisted Living Regulation
CCEL Canadian Centre for Elder Law
CIHI Canadian Institute for Health Information
CLeAR e BC Patient Safety and Quality Council Call for Less Antipsychotics in Residential
Care Initiative
CMA Canadian Medical Association
CMPA Canadian Medical Protective Association
CPSBC College of Physicians and Surgeons of British Columbia
CRPD United Nations Convention on the Rights of Persons with Disabilities
DSM-5 e American Psychiatric Association’s Diagnostic and Statistical Manual of Mental
Disorders, 5th edition, a handbook used internationally to guide the diagnosis of
mental disorders.
FFS Fee-for-service (physician remuneration funding model)
GPSC General Practice Services Committee
HCCA Health Care (Consent) and Care Facility (Admission) Act
HCA Health Care Assistant
HPA Health Professions Act
HPRB Health Professions Review Board
LCO Law Commission of Ontario
LPN Licensed practical nurse
MAR Medication Administration Record
MSP Medical Services Plan
MHA BC Mental Health Act
MOST Medical Order for Scope of Treatment
NCAS Nursing Community Assessment Service
NP Nurse practitioner
PCQO Patient Care Quality Oce
PGT Public Guardian and Trustee of British Columbia
PIECES Physical, Intellectual, Emotional, Capabilities, Environment and Social
assessment framework
PPA Patients Property Act
PRN e term commonly used in medical practice to describe a physician order to administer
medication as needed, or as circumstances require, as opposed to on an ongoing regular
basis. e abbreviation comes from the Latin phrase, pro re nata.
RAA Representation Agreement Act
RN Registered nurse
SDM Substitute decision maker
TSDM Temporary Substitute Decision Maker (under section 16 of the Health Care (Consent)
and Care Facility (Admission) Act)
Glossary of Terms 25
Advance Directive A written and formally
executed instruction to accept or refuse specic
future health care treatment if the author becomes
incapable in the future of making such decisions.
Advance directives must meet the requirements
set out in the Health Care (Consent) and Care
Facility (Admission) Act to be valid.
Anti-psychotic Medications Drugs for treat-
ment of psychotic disorders such as schizophre-
nia and bipolar disorder. In geriatric psychiatry
these drugs may be helpful in the management
of psychotic disorders, mood disorders, delirium,
psychosis and aggression.
Behavioural & Psychological Symptoms
of Dementia (BPSD) A term used to describe
symptoms of disturbed perception, thought
content, mood or behaviour that often occur in
people living with dementia.
2
ese may include
delusions, hallucinations, depressive symptoms,
agitation and hostility.
3
In this report we prefer
the term dementia-related behaviour.
Best Practice “A Best Practice is an interven-
tion, method or technique that has consistently
been proven eective through the most rigor-
ous scientic research (especially conducted by
independent researchers) and which has been
replicated across several cases or examples.”
4
In
comparison, “Promising Practices demonstrate
their effectiveness through the most rigorous
scientic research, however there is not enough
generalizable evidence to label them ‘best
practices’.”
5
Chemical Restraint The administration of
psychotropic medication to prevent harm to a resi-
dent or others in situations where a resident has
lost behavioural control, or where there is immi-
nent risk of loss of control in behaviour. ere is
signicant variation in understanding amongst
health care professionals, sta, and regulators as
to what is considered a chemical restraint versus
health care treatment.
Committee of the Person A person appointed
by the court under the Patients Property Act to
make personal decisions (as opposed to nan-
cial and property decisions) on behalf of a
person whom the Court has declared incapable
of making such decisions for themselves. Types
of decisions that can be made by a committee of
the person may include health care decisions and
where the person should live. e Health Care
(Consent) and Care Facility (Admission) Act uses
the term “personal guardian” instead of “commit-
tee of the person”.
Consent to Health Care An informed, volun-
tary decision made by a capable adult aged 19
or over, or their authorized substitute decision
maker, to accept or refuse health care treatment
oered by a health care provider. e require-
ments for a valid, informed consent to health care
are set out in the Health Care (Consent) and Care
Facility (Admission) Act.
6
Dementia An overarching term for a set of
symptoms caused by disorders affecting the
brain, that may aect memory, thinking, prob-
lem-solving, language, and executive function.
ese symptoms can impact a person’s ability to
perform everyday activities, as well as mood and
behaviours.
7
Alzheimer’s disease is a specic form
of dementia.
Extended leave under the Mental Health
Act A decision made by a designated facility
pursuant to ss. 37 or 38 of the Mental Health
Act to place an involuntary patient on leave in
the community or in a facility. Leave terms will
include conditions with which the involuntary
patient must comply.
Glossary of Terms
26 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Geriatrician A physician with specialization in
the prevention, diagnosis, and treatment of older
people, particularly those with chronic, complex
medical conditions.
8
Geriatric psychiatrist A psychiatrist with
subspecialty training who focuses on the assess-
ment, diagnosis, and treatment of complex mental
disorders which usually occur in older people.
9
Health Care Defined in the Health Care
(Consent) and Care Facility (Admission) Act as
“anything that is done for a therapeutic, preven-
tive, palliative, diagnostic, cosmetic or other
purpose related to health.” In BC “health care”
does not include personal care or admission to a
care facility.
Health Care Assistant Front line care provid-
ers, commonly known as care aides in BC, who
provide care in a variety of institutional and
community settings, including home support
agencies and long-term care.
10
Health Care Provider For the purposes of
consent law, a health care provider is some-
one who is licensed, certied, or registered to
provide health care under the Health Professions
Act or the Social Workers Act.
11
ere are currently
25 self-regulated professions under the Health
Professions Act.
Long-Term Care Commonly referred to as
seniors’ homes, nursing homes or residential care,
long-term care facilities provide 24-hour profes-
sional care to people with complex health care
needs who can no longer be cared for in their own
homes or an assisted living residence.
Major Neurocognitive Disorder e equiva-
lent term for dementia used in the most recent
edition of the American Psychiatric Association’s
Diagnostic and Statistical Manual of Mental
Disorders (the DSM-5), which is used interna-
tionally for diagnosing mental disorders.
Medical Order for Scope of Treatment A
physician order reecting resident and substitute
decision maker wishes which document the level
or degree of medical intervention that should be
provided to a person if they do not have decision
making capacity at the requisite time. e medi-
cal order is not a legal planning document like a
representation agreement or an advance directive.
Neurodegeneration Progressive damage to the
brain caused by the loss of cells and breakdown of
connections within the brain over time. Diseases
which cause dementia are forms of neurodegen-
erative conditions.
Person-Centered Care Person-centred care is
a holistic philosophy and an interactive process
that recognizes every person is a unique individ-
ual with their own values, history and personality,
and equally deserving of recognition of dignity,
autonomy, and the right to participation in soci-
ety. Person-centred care starts with attentiveness
to the unique person’s strengths and abilities, and
needs and desires regarding care, and emphasizes
active engagement of the person in the caregiving
relationship.
12
Personal Care Care usually provided by health
care workers to residents of care facilities that falls
outside the scope of health care, and include tasks
such as feeding, dressing and personal hygiene.
Psychotropic “A drug that aects brain activi-
ties associated with mental processes and behav-
ior,” such as anti-psychotics, anti-depressants,
and anti-anxiety drugs.
13
Representative A person authorized by a
representation agreement to make or help make
certain decisions on behalf of the adult who made
the representation agreement. e type of deci-
sions a representative can make will depend on
the authority given to them in the representation
agreement.
Glossary of Terms 27
Representation Agreement An agreement
made by a person under the Representation
Agreement Act to provide another person (the
representative) with authority to make certain
decisions on their behalf, or to help them make
certain decisions. e agreement will specify the
types of decisions the representative may make,
and could include decisions about personal care,
health care, or the routine management of nan-
cial aairs. A more comprehensive agreement
may include decisions about where the person
should live, their involvement in educational and
recreational activities, where they should work,
and whether they should be restrained to provide
health or personal care.
Restraint In the long-term care facility
context, restraint means “any chemical, elec-
tronic, mechanical, physical or other means of
controlling or restricting a person in care’s free-
dom of movement in a community care facility,
including accommodating the person in care in
a secure unit.”
14
Special Care Unit A separate unit found in
some long-term care facilities which is specif-
ically tailored to care for adults with advanced
dementia, and which is typically secured to
prevent residents from leaving.
Substitute Decision Maker A capable adult
who is authorized to make health care decisions
on behalf of an incapable adult as either their
court ordered guardian (committee of person),
representative appointed by a representation
agreement, or a temporary substitute decision
maker under the Health Care (Consent) and Care
Facility (Admission) Act.
Supported Decision Making Supported
decision making is an alternative to substitute
decision making. Supportive decision makers
“support” people to:
• Understand the issues involved
in a decision;
• Understand the consequences
of a decision;
• Access appropriate assistance or
information to them make a decision;
• Express their views, and act as interpreter
where needed;
• Help others to truly hear or
understand them; and
• Help people and institutions appreciate
that they have needs, rights, values,
preferences and goals, and to appreciate
the autonomy, dignity and wisdom of
people with disabilities—in other words,
help prevent discrimination and bias.
BC law recognizes supported decision making
using representation agreements.
15
However,
supported decision making also occurs without a
formal agreement.
Supportive Decision Maker A person
who supports another with decision making
(described above).
Temporary Substitute Decision Maker
(TSDM) An adult chosen by a health care
provider from a hierarchical list of individuals
(usually the spouse, adult child, other relative or
close friend) to make a health care decision on
behalf of an adult who does not have capacity
to make the decision. TSDMs must make deci-
sions in accordance with the requirements set out
in the Health Care (Consent) and Care Facility
(Admission) Act.
28 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Medications and poly-pharmacy, anti-psychotics is a huge topic so that some people are
aware of that. But not through the consent lens.
– Physician
CHAPTER 1
Introduction
is chapter outlines:
• Why we undertook this project focused on health care consent for people living
with dementia;
• What subjects were included in research, consultation, and project recommendations;
• How we completed this work, particularly, the dierent ways we engaged community,
health care practitioners, and other stakeholders with relevant expertise or experience; and
• What values informed project design, focus, and ndings.
1.1 RATIONALE FOR THIS PROJECT
In recent years, there has been increasing interest in medication practices involving older people,
including polypharmacy, o-label use, over-medication, and excessive prescription of psychotropic
medications,
16
particularly anti-psychotics. However, while informed consent is a key aspect of appro-
priate prescribing, there remains very little attention to consent in the context of law, policy and prac-
tice discussions of health care for older people living with dementia. Debate and dialogue regarding
health care for older people often belie a well-meaning view of seniors as passive recipients of care
1 | Introduction 29
at the expense of consideration of their right to make their own decisions. is project on health
care consent was developed to address our collective cultural blind spot when it comes to aging with
dementia, and informed consent to health care.
Recent data conrms that health care decision making for older people often occurs without proper
consent: in a recent survey of long-term care conducted by the BC Seniors Advocate, 38% of residents
reported they had not been consulted about their medications, and only 65% of family members
said that they had been consulted about medication changes.
17
Decisions regarding medication have
a signicant impact on quality of life and life expectancy, and older people and substitute decision
makers often do not appreciate the right to ask questions, explore alternatives, and provide, refuse or
revoke informed consent.
e 2018 National Dementia Conference Report noted that participants emphasized the importance
of building capacity to fully involve people living with dementia and their family caregivers in health
care decision making.
18
Inadequate practice with respect to health care consent is contrary to the law,
and respect for the right to consent to health care matters to us all. In this project we focus on people
living with dementia because:
• Dementia impacts many British Columbians;
• Medication prescribing for older people living with dementia raises particular challenges;
• People living with dementia confront stigma about their decision making abilities; and
• Health care consent rights are fundamental to the liberty and self-determination of people
with disabilities.
30 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
In this section we explore how these four areas render health care consent is a partic-
ularly urgent topic people living with dementia.
1.1.1 Dementia Impacts Many British Columbians
Based on sheer numbers alone, health care consent for people living with demen-
tia is becoming a signicant practice issue. Data compiled by the World Health
Organization indicates that the prevalence of dementia within the population
doubles for each ve-year increase after age 65.
19
As such, British Columbia has
recognized that while “dementia is not a normal part of aging, the risk of developing
dementia does increase with age.”
20
Dementia is particularly prevalent among our
oldest seniors: research from the Alzheimer’s Society of Canada projects an increase
in prevalence among adults over age 85 over the period 2008-2038 from 33% to 43%
(men) and 46% to 52% (women).
21
Estimates of prevalence amongst seniors generally
in Canada vary from 6 to 15%.
22
e recent 2016 Statistics Canada census conrmed Canada’s rapidly aging popu-
lation. In 2016, seniors, who outnumbered children for the rst time in Canadian
census records, accounted for almost 17% of the overall population.
23
BC, and partic-
ularly Vancouver Island, has one of the fastest growing populations of seniors in
Canada.
24
We also have a record high number of seniors age 85 and older in Canada:
in 2016, 2.2% of the population fell into that age group, and the number of people
age 85 and older rose by 19.4%—almost 4 times the rate of the growth of the overall
population, which grew by only 5%.
25
In BC, we thus have an increasing number of
seniors, and an older senior population than in previous years.
As our population continues to age, many of us will be impacted by dementia—we
may be living with dementia ourselves, caring for someone living with dementia,
helping someone living with dementia with decision making, or making health care
or other decisions for someone living with dementia. e impact of dementia on
our families and communities will continue to grow as the proportion of seniors
in BC’s population continues to increase over the next few decades.
26
Although
prevalence can be dicult to estimate, due to the challenges of getting a diagnosis,
research suggests that currently between 60,000 and 70,000 British Columbians have
been diagnosed with some form of dementia.
27
at number is expected to rise to
87,000 by 2024.
28
1.1.2 Medication Prescribing Raises Challenging Practice
Questions
Medication prescribing for older people living with dementia raises challenging ethi-
cal, medical, and practical issues. Over-medication and inappropriate medication are
of particular concern with respect to older people because they may be at an increased
[Family physicians] don’t
have time to phone every
family every time they add a
medication, because— and
it’s very true—that you could
phone someone, they could
phone you back, you could
phone them back. It’s not
easy to get this to happen.
– Geriatric psychiatrist
1 | Introduction 31
risk of adverse eects, due to the way that older bodies process medication.
29
Almost any form of medi-
cation can have side eects, which can range from unpleasant to debilitating or life-threatening. e
greater the number of medications, the greater the risk of drug interactions and potential side eects.
Best practices developed with respect to use of anti-psychotics—and medication generally—thus
require prescribing health professionals to:
• Explore non-pharmacological management rst (where safe to do so);
• Consider less toxic medications whenever possible;
30
• Start dosage at low levels (start low and go slow);
31
and
• Monitor ongoing well-being for adverse events to ensure that the medication use reects
the best balance between symptom improvement and negative side eects.
32
Recent studies have focused on practice in long-term care due to the dependency and frailty of the
adults living in these environments, and the lack of ongoing presence of family to provide input and
oversight. Particularly, a large percentage of long-term care residents are living with some form of
dementia.
33
In 2017 the BC Seniors Advocate reported the prevalence of dementia in long-term care
at approximately 66%.
34
In recent years, a number of studies have expressed concern regarding potential over-medication and
inappropriate medication prescribing for older people in long-term care. Although poor medication
practices with respect to almost any form of medication can cause problems, use of anti-psychotics
has been a focus.
In Placement, Drugs and erapy, the oce of the Seniors Advocate reported, based on data gathered
through the Canadian Institute for Health Information (CIHI),
35
that up to 51% of residents in BC
care facilities were taking nine or more dierent drugs.
36
e report examined use of psychotropic
medications in long-term care, as data on use of such medication is tracked through the InterRAI
Resident Assessment Instrument.
37
e Seniors Advocate identied extensive use of two kinds of
psychotropic medications in long-term care— anti-psychotics and anti-depressants—as an area of
particular concern, reporting that 34% of seniors in long-term care are prescribed anti-psychotic
medications.
38
Similarly, a 2011 Ministry of Health report revealed both signicant use of anti-psy-
chotics, and concerns regarding lack of appropriate consent to treatment, and engagement of family,
in developing care plans.
39
A 2018 report by CIHI indicated that while educational supports have
helped to reduce anti-psychotic drug use among seniors with dementia in BC between 2011–2012 and
2015–2016 from 40% to 31%, inappropriate anti-psychotic use remains a concern.
40
e Ministry of Health has stated that use of anti-psychotics in long-term care is primarily in response
to the increasing number of residents living with dementia.
41
As one researcher has explained:
[M]edication use in nursing homes (NH) occurs under some of the most complex circum-
stances in all of medicine. Most NH residents are frail, with multiple medical conditions
typically related to cardiovascular disease, arthritis, stroke and diabetes. Nearly half are
over age 85 and have disabling dementia that impairs their ability to communicate or
32 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
perform daily activities. NH residents also receive, on average, seven to
eight medications each month, putting them at high risk of medica-
tion-related problems including use of inappropriate antipsychotics.
42
In response to the above identied issues with respect to anti-psychotic medica-
tion, various resources have been developed in BC to support enhanced practice with
respect to medication:
• e BC Ministry of Health published a Best Practice Guideline for
Accommodating and Managing Behavioural and Psychological Symptoms of
Dementia in Residential Care in 2012.
43
• e BC Care Providers Association published a Best Practices Guide for
Reducing Anti-Psychotic Drug Use in Residential Care in 2013,
44
which was
updated in 2018.
45
• e BC Patient Safety and Quality Council developed the CLeAR (Call
for Less Antipsychotics in Residential Care) Initiative, which has focused
on both improving non-pharmacological approaches to dementia-related
behaviours, and thoughtful prescribing of medications for medication-
responsive symptoms. For those facilities who have participated in
this voluntary initiative, signicant reductions in prescribing of anti-
psychotics has occurred.
46
Ultimately, however, issues in relation to medication prescribing are not limited to the
long-term care environment: approximately 40-60% of people living with dementia
in BC are living in community, and research suggests problematic prescribing prac-
tices in community settings as well. A recent report by AARP, formerly the American
Association of Retired Persons, indicates that while anti-psychotic use has declined
in long-term care settings, there is much to be done to improve practice, and reduce
use, in community care.
47
Further, although there has been much focus on the use of anti-psychotic medica-
tions for people living with dementia, the right to informed consent applies to all
medication and treatment.
In 2012, the Shared Care Committee, one of the four Joint Collaborative Committees
of the Government of BC and Doctors of BC, developed a Polypharmacy Risk
Reduction Initiative. e initiative aims to raise physician awareness of polypharmacy
and support physicians and facilities to implement strategies that will reduce risks
for patients and residents who are taking multiple medications.
48
Unlike initiatives
aimed at addressing anti-psychotic use, the rst phase of this initiative recognized
that informed consent is critical, identifying “[p]roviding education and support for
residents and family members to inform medication-related decisions” as an ongoing
supportive strategy.
49
He said to me, ‘I’m not telling
them I have Alzheimer’s’… You
know, there’s a lot of people
who are not saying anything
because they don’t want to
be discriminated against.
– Person living
with dementia
My daughter, my husband and
I went and sat with the doctor.
He looked at my daughter and
husband and asked should
we do this, and when is a
good time to do this? I was
appalled. My daughter left
the room and was mortied
that I was invisible. I know I
ended up doing the surgery.
I took the power back.
– Person living
with dementia
1 | Introduction 33
1.1.3 People Living with Dementia Confront Particular Stigma
e experiences of people living with dementia are shaped not only by neurodegen-
eration, and the availability of medication and treatment to slow the progression
of disease, but also by social attitudes towards them. People living with dementia
confront both a general lack of understanding of the condition, and prejudicial
assumptions regarding their awareness and intelligence. Just as importantly, people
living dementia can internalize these assumptions regarding their mental abilities,
resulting in a dynamic “wherein people with dementia may voluntarily begin to limit
themselves as they respond to being treated with less respect and as if they were less
competent.”
50
Health care decision making for people living with dementia is deeply impacted by
prevailing attitudes regarding dementia. Health care and caregiving relationships are
relationships of power, and respect for the decision making rights of people living
with dementia requires recognition of their capacity to participate in the decision
making process. When people living with dementia are presumed incapable, they
become excluded from intimate decisions about health care, and robbed of essential
aspects of their autonomy.
Although ageism is common,
51
arguably people living with dementia are particu-
larly at risk of exclusion from decision making, as compared with other older people,
because myths and assumptions about dementia are linked to abilities presumed inte-
gral to decision making, such as recall and judgement. As we discuss further in this
report, people living with dementia are sometimes presumed to be incapable of all
decision making, even when no assessment of their cognitive abilities has occurred.
However, many people living with dementia are capable of participating in health
care decision making for themselves, either independently, or with the support of
friends, family, and others.
1.1.4 Health Care Consent Rights are Fundamental to Liberty and
Self-determination
e right to give or refuse consent is a fundamental right grounded in the common
law, protected under the Canadian Charter of Rights and Freedoms,
52
and recognized in
BC’s Health Care (Consent) and Care Facility (Admission) Act (HCCA).
53
e central-
ity of this right to liberty was summarized by Robins JA in the seminal Ontario
Court of Appeal decision of Fleming v. Reid:
e right to determine what shall, or shall not, be done with one’s own
body, and to be free from non-consensual medical treatment, is a right
deeply rooted in our common law. is right underlies the doctrine of
informed consent. With very limited exceptions, every person’s body is
considered inviolate, and, accordingly, every competent adult has the
34 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
right to be free from unwanted medical treatment. e fact that serious risks or conse-
quences may result from a refusal of medical treatment does not vitiate the right of medical
self-determination. e doctrine of informed consent ensures the freedom of individuals
to make choices about their medical care. It is the patient, not the doctor, who ultimately
must decide if treatment -- any treatment -- is to be administered.
54
For people living with complex health issues, and particularly adults living in long-term care, autonomy
and self-determination are limited by the amount of choice they have over medication and treatment
issues. For some people, health care is provided on a daily basis; for people who are frail, or who have
with higher needs, health interventions occur more frequently, and can be very invasive. Medication
may be administered multiple times a day. In some instances, medication can be sedating, or otherwise
further undermine independence or awareness. Even in community care situations, decisions regard-
ing treatment need to be made regularly, and can have a signicant impact on quality of life.
Older people living with dementia are a vulnerable, growing subset of BC’s population. However,
ultimately the issue of informed consent to health care treatment matters to everyone. is project’s
research will hopefully support a more robust understanding of the right to informed consent in BC
that will benet anyone receiving treatment, or consenting to treatment on behalf of another person.
Project ndings will be of benet to people living with disabilities other than dementia who can also
experience exclusion from health care decision making due to stereotypical assumptions about mental
capacity, lack of respect for the right to informed consent, and sometimes even an absence of respect
for the value of their lives.
Caring for people living with dementia is challenging and important work. Excellent resources exist to
support policy and practice. However, there remains a need to a develop a rights-based understanding
of health care consent to complement the dominant health care orientation. is project was devel-
oped to further that goal.
1.2 PROJECT SCOPE
Conversations about Care examines the law, policy, and practice of consent to health care for people
living with dementia in BC. Health care consent is a topic that is not easily contained. Proper study
requires a review of legislation developed by government, and legal principles which have emerged
from court decisions. In this report we review legislation governing:
• Informed consent to health care;
• Substitute and supported decision making for health care;
• Medication use in long-term care; and
• Involuntary committal for psychiatric treatment.
e goal of the project was to consider the law in practice, both to ensure legislation reects the reali-
ties of practice, and to consider whether the barriers to good practice in BC are related to the substance
of legislation, its implementation, or a combination of both. erefore we also study the broader
1 | Introduction 35
framework that impacts the relationships between people living with dementia and their health care
providers, and the right and ability to request a review of decisions related to health care treatment.
Our project scope thus also included:
• e regulation of health care professionals and sta in BC;
• Codes of ethics, practice guidelines, and other documents developed by the various
regulatory bodies and practice associations in order to support best practice;
• Education and professional development of health care professionals and sta in relation
to health care consent;
• Review fora available to people who wish to challenge a health care treatment decision, or
a nding that they are incapable of consenting to a treatment; and
• Access to legal assistance in relation to health care decision making and advance planning
for health care.
As a result of this attention to the realities of practice, consultation (discussed in greater detail below)
represented a large part of project research.
is project aims to clarify and enhance the law. We oer recommendations for reform where the legal
framework has shown itself to be inadequate in terms of respecting rights, or reveals inconsistencies
that form barriers to best practice. Signicant comparative legal research is included to help identify
alternative approaches.
In this report we explore the legislation governing the practice of the diverse health care professions
who provide care to people along their journey with dementia. While recent research and media have
shined a spotlight on the use of anti-psychotics in long-term care, the right to consent, refuse, and
revoke consent to medication applies to all non-emergency medication and treatment, including those
decisions made in community, hospital, and long-term care settings. In some instances, dierent laws
and regulations apply depending on the site of care.
Although access to medically assisted death is an area of concern to some people living with dementia,
we have not conducted any research and consultation specically in relation to this topic. We view end
of life and palliative care decision making, including access to medically assisted death, as complex
topics deserving of separate focused attention. However, we hope that any discussion of these topics
will reect some of the unique barriers to decision making facing people living with dementia and
their families, as well as the importance of supporting robust conversations about care to facilitate
informed consent.
Project sta and Advisory Committee members had many discussions about the appropriate scope
for our research and recommendations. In two particular areas we struggled to agree on appropriate
scope. ey were:
• Mental health law; and
• Care facility amission legislation.
36 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
In the end, we did not include in-depth reform of either of these areas of law in our recommendations.
However, both topics have signicant impact on the experiences of people living with dementia. We
include discussion of these areas of law in this summary of scope to outline concerns raised throughout
our project, and explain why these areas of law are not addressed in Chapter 7 of this report.
1.2.1 Mental Health Law
As we explain in greater detail in Chapters 3 and 7, the HCCA applies to all health care treatment—
excluding psychiatric treatment under the involuntary committal provisions of BC’s Mental Health
Act (MHA).
55
In this report we summarize BC’s mental health law as it applies to people living with
dementia. We identify concerns regarding practice, and we make recommendations for enhancing
practice in this area. However, we do not make recommendations for in-depth reform of mental health
law in BC. A number of committee members felt very strongly that it was important for this report
to include a call to repeal legislative overrides on health care consent rights contained in the MHA;
an equal number felt that recommendations for mental health law reform were beyond project scope.
e use of the MHA to involuntarily commit people living with dementia results in a loss of health
care decision making rights, regardless of mental capacity to make these decisions. is is a practice
which appears discriminatory, unconstitutional, and unfair to both people living with dementia, and
their friends and family. Law reform work, academic literature, and jurisprudence have questioned the
appropriateness of the deemed consent provisions of BC’s MHA. e Supreme Court of Canada, in
reviewing a decision of the Consent and Capacity Review Board of Ontario, has applied the doctrine
of informed consent to the mental health context. e Court stated, quoting the 1990 Enquiry on
Mental Competency:Final Report, that it is problematic “to conate mental illness with lack of capaci-
ty,”
56
noting that “[t]he right to refuse unwanted medical treatment is fundamental to a person’s dignity
and autonomy.is right is equally important in the context of treatment for mental illness.”
57
A recent report by the Community Legal Assistance Society on BC’s mental health system concluded
that the deemed consent model is not compliant with the Canadian Charter of Rights and Freedoms
or the United Nations Convention on the Rights of Persons with Disabilities (CRPD),
58
and recom-
mended that the Government of BC “[r]eview and amend the deemed consent model to establish
equal health care consent rights for physical and mental health care decisions.
59
At the time of writing,
the Council of Canadians with Disabilities has commenced a Charter challenge to the deemed consent
provisions of the MHA and related provisions of the Representation Agreement Act and the HCCA.
60
We have not included recommendations regarding in-depth reform of the MHA, largely due to the
breadth of our consultation work. Our consultation addressed the use of the MHA for people living
with dementia only. We did not consult more broadly with people living with mental illness, or with
lawyers, advocates, psychiatrists, nurses, social workers, and others who see the MHA applied in their
work with younger people. Our consultation was not suciently broad and comprehensive to support
recommendations for reform of the MHA, which would apply beyond the experiences of people living
with dementia. However, it is not possible to make law reform recommendations with respect to the
MHA that would impact only to people living with dementia.
1 | Introduction 37
at said, our research and consultation suggests that it would be worthwhile to consider reform of
mental health law in BC. We encourage the appropriate agency to conduct robust consultation to
explore this issue, and point out that thorough consultation on this subject must include people living
with dementia, and their families, friends, and advocates.
1.2.2 Care Facility Admission Law
In BC we do not yet have a legal framework for substitute decision making for care facility admission
for adults who are incapable of making the decision themselves. During the course of this project the
Government of BC announced that it will be implementing the long awaited care facility admission
provisions contained in Bill 26.
61
At the time of writing, implementation has been further delayed to
2019, and regulations have not yet been published. is legislation was originally passed in 1993, but
did not become law at that time.
62
After re-enactment in 2006
63
the provisions were further amended
in 2007.
64
ere has been limited consultation on the legislation since the early 1990s before the orig-
inal 1993 bill was passed.
Although care facility admission is intimately tied to health care consent—particularly for older
people—we have not reviewed the provisions in this study, largely because it is not possible to get an
accurate picture of the law in the absence of an opportunity to review the regulations. However, we
note that Project Advisory Committee members expressed a variety of perspectives on the legislation
as it is currently written. Some expressed concern that the legislation prioritizes a best interests stan-
dard over the wishes, values, and beliefs of the adults potentially being admitted to a care facility, and
authorizes potential deprivations of liberty through involuntary admission to a facility without the
existence of adequate review mechanisms. ese members questioned whether the legislation complies
with Charter of Rights and Freedoms and the United Nations CRPD,
65
and encouraged the government
to engage in further public consultation before nalizing the care facility admission legislation.
Some members of the Committee maintained that the current state of aairs is problematic because
there is no legal process in place whatsoever governing consent to care facility admission, and there-
fore no legal protections in place for having the right to consent to admission, or a specic admission
itself, reviewed.
Further, many Project Advisory Committee members emphasized that health care consent and care
facility consent are not equivalent concepts, and do not lend themselves to equivalent treatment at
law. A number of committee members noted that while an assessment of incapability to consent to
health care treatment must be specic to the treatment issue at hand, incapability to consent to care
facility admission is a more complex question generally requiring a more comprehensive assessment
of incapability.
Care facility admission legislation may have a signicant impact on the lives of older people in BC. e
CCEL and the Society welcome the opportunity to comment on the legal framework for care facility
admission when the regulations are available for review.
38 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
1.3 PROJECT METHODOLOGY
1.3.1 Project Leadership
is project was a collaboration of the CCEL and the Alzheimer Society of B.C. (the Society). Project
work was shared and the themes of this report were developed in collaboration. e CCEL sta
undertook legal and related social science research, wrote this report, and conducted key informant
interviews. CCEL sta also developed research memoranda and agendas to support each Project
Advisory Committee meeting. e Society recruited consultation participants from supporters in
the community, and organized and attended almost all the consultation focus groups, which were
facilitated by CCEL sta. e Society worked with a professional photographer to develop images
illustrating people living with dementia and their family caregivers for this report.
roughout the lifetime of the project, the partners undertook many community presentations to
health care professionals and long-term care facility sta to help raise awareness of the project, the
urgent health care consent issues engaged, and the legal rights and responsibilities involved. We antic-
ipate dissemination of ndings will continue between the partners in a collaborative manner.
Project Advisory Committee
As with many CCEL projects, a Project Advisory Committee provided ongoing guidance regarding
research and consultation methodology, key stakeholders, and recommendations to ow from research.
e committee was formed by bringing together a diverse range of people from various stakeholder
bodies, as well as people with particular subject matter expertise relevant to the project. Consistent
with the slogan “nothing about us without us”, the committee included a person living with dementia.
Committee members served as volunteers, and contributed a signicant amount of their time to this
project. is project would not have been possible without their extensive subject matter expertise. A
number of committee members brought both professional experience and personal experience as a
family caregiver to their understanding of the issues.
e Project Advisory Committee members were:
• Dr. Heather D’Oyley, Geriatric Psychiatrist, Vancouver Coastal Health
• Dr. Elisabeth Drance, Family member (caregiver) and Geriatric Psychiatrist, Vancouver
Coastal Health and Providence Health Care
• Tara Fitzgerald, Quality Leader, Seniors Care, BC Patient Safety & Quality Council.
Following her resignation from the Council, Tara was replaced by Colleen Kennedy,
Executive Director, Health System Improvement and Engagement, and Geo Schierback,
Leader, Health System Improvement
• Isabel Grant, Professor, Peter A. Allard School of Law, University of British Columbia
• Laura Johnston, Lawyer, Community Legal Assistance Society
• Michael Kary, Director of Policy and Research, BC Care Providers Association
1 | Introduction 39
• Alison Leaney, Provincial Coordinator, Vulnerable Adults Community Response, Public
Guardian and Trustee
• Sarah Khan, then Acting Executive Director, Seniors First BC (due to illness of various
sta, a number of Seniors First BC sta attended committee meetings, including Berta
Lopera, Gordon Marshall, Kevin Smith, Martha Jane Lewis, and Grace Balbutin)
• Barbara Lindsay, Director, Advocacy & Education and Marketing & Communication,
Alzheimer Society of B.C.
• Isobel Mackenzie, Seniors Advocate, Province of BC
• Jim Mann, Person living with dementia, dementia advocate
• Dr. Deborah O’Connor, Professor, School of Social Work, and Co-director, Centre for
Research on Personhood and Dementia, University of British Columbia
• Lisa A. Peters, QC, Partner, Lawson Lundell LLP, and Board Member, BC Law Institute
• Micheal Vonn, Policy Director, BC Civil Liberties Association
• Penny A. Washington, Partner, Dispute Resolution & Litigation, Norton Rose Fulbright
We strove for consensus of the committee regarding all recommendations, with the understanding
from the outset that the nal report would be a publication of the CCEL and the Society, and that, if
necessary, areas of dissent would be noted. In the end, all the recommendations contained in this report
are supported by the full committee. However, in some instances a number of committee members,
particularly members who work for advocacy agencies, would have taken a stronger position regarding
reform in the absence of the desire for consensus.
Ministry of Health ocials provided some background information to the committee and otherwise
attended meetings of the committee as observers only. e content of this report does not reect the
position of the Ministry of Health or the Province of British Columbia.
1.3.2 Consultation Process
Qualitative research, generally understood as gathering information about people experiences through
conversation, was a key component of project work, complementing our textual study of legislation,
academic literature, and other written sources, including materials produced by various Alzheimer’s
agencies from around the world. e consultation activities we employed as a form of qualitative
research included:
66
• Key informant interviews with people whose work involves consent to treatment and
medication for older people living with dementia (N = 65);
• Focus groups with people living with dementia and their family caregivers (events = 13; N
= 58; 14 = people living with dementia; 44 = family caregivers);
• Conference and community presentations where we integrated a question and
answer session oering practitioners (nurses, social workers, lawyers, directors of care
40 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
facilities, etc) an opportunity to identify their own concerns around health care consent
(events = 8); and
• Online survey of family caregivers (N = 28).
Findings from each stream of consultation are summarized in Chapter 6.
Key Informants
Most interviews were conducted by telephone with one interviewee. We conducted a few group inter-
views, e.g., with sta from the Ministry of Health and the Public Guardian and Trustee. A detailed list
of key informants is included in the materials as Appendix B.
Interviewees included the following professionals:
• Physician
• Geriatric psychiatrist
• Geriatrician
• Registered nurse
• Registered psychiatric nurse
• Pharmacist
• Social worker
• Lawyer
• Licensed practical nurse
• Speech and hearing professional
We interviewed people holding diverse positions with the provincial health authorities, including the
First Nations Health Authority. Interviews included people working in the position of:
• Director of care
• Ethicist
• Policy advisor
• Practice consultant
• Manager of programs
• Abuse and neglect specialist
• Director of risk and compliance
Interviews included people whose practice covered:
• Home and community care
• Long-term care
1 | Introduction 41
• Assisted living
• Geriatric mental health
• Acute care (hospital setting)
• Private practice
• Tertiary mental health
We spoke with representatives from some of the BC regulators: physicians and surgeons; nursing
professionals; speech and hearing professionals.
We spoke with people who represented other parts of the eld such as:
• Family Caregivers BC
• Public Guardian and Trustee
• Advocate for Service Quality
• SafeCare BC
• BC Patient Safety and Quality Council
• PosAbilities (a representative attended the Inclusion BC focus group)
Quotations from key informants and focus group participants are included throughout this report
where they help clarify the views of professionals and community on the issues. Quotations do not
express the views of the CCEL or the Society. People quoted are identifed by practice area to contex-
tualize their comments without compromising anonymity. Many people could have been identied
with multiple categories, e.g., a nurse who works for a health authority or a director of care who is also
a physician. In each case, we chose the category that was most relevant given their particular comment.
Community Focus Groups
e Society felt strongly that caregivers and people living with dementia should be invited to distinct focus
groups in order to permit frank discussion. A few participants were not happy with this separation. For
some caregivers, this approach resulted in frustration and inconvenience, because family caregivers usually
provided transportation or accompaniment. One person described her caregiver and herself as a team, and
expressed frustration at being separated for the purpose of the discussion.
It should be noted that the separation was articial in some ways:
• As there is a genetic link with dementia, a number of the people living with dementia had
previously been family caregivers.
• Some of the family caregiver participants brought professional experience to the
discussion as they were also health care professionals.
• Some family caregivers who attended had been a family caregiver for a person living with
dementia who had since passed away, and were now volunteer caregivers for other people
in the community.
42 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
For the caregiver groups, we opened up the session to anyone who had been a caregiver of a person
living with dementia at any point in their lives.
A key dierence in the caregiver versus people living with dementia groups is that all the people living
with dementia were still living independently in community, or semi-independently with the support
of family. Caregivers shared experiences across the life course of dementia from early diagnosis to end
of life, including experiences with health care providers in community and within care facilities.
Community Presentations
e CCEL undertook a signicant number of presentations very early on in the life of the project to
assist us to understand the legal problems and the practical challenges. Presentations were identied
as an eective way to reach large numbers of health care professionals and other health care sta. e
eight presentations are listed below:
1. Tapestry Geriatric Services conference (April 7, 2017)—poster presentation
2. Simon Fraser Gerontology Friesen Conference with BC Psychogeriatric Association
(May 19, 2017)—panel
3. BC Care Providers Association Annual conference (May 31, 2017)—panel
4. Provincial Home Health Advisory Committee (Ministry of Health)—June 12, 2017—
individual presentation
5. Fraser South Directors of Care Group (June 20, 2017)—individual presentation
6. Canadian Bar Association, Elder Law Section ( June 21, 2017)—individual presentation
7. BC Health Regulators (September 27, 2017)— individual presentation
8. 14th Annual Leadership Program for Physicians and Leaders in Long Term Care
(November 18, 2017)—panel
List of focus groups
Date Community Group Attendance
April 18 Victoria People living with dementia 4
April 18 Victoria Family caregivers 5
April 19 Nanaimo People living with dementia 1
April 19 Nanaimo Family caregivers 3
April 25 Kelowna Family caregivers 6
May 1 Burnaby People living with dementia 2
May 2 North Vancouver People living with dementia 6
May 3 Vancouver Family caregivers 5
May 9 North Vancouver Family caregivers 9
May 12 Vancouver People living with dementia 1
May 24 Teleconference Family caregivers 6
August 21 Inclusion BC Family caregivers and sta with non-prots 6
August 24 Chinese Family caregivers 4
1 | Introduction 43
Survey of Family Caregivers
Finally, an online survey of caregivers was developed in an eort to reach family caregivers who might
not have enough time to attend an in-person event. e online survey was open throughout September
2017 until October 6, 2017. It was promoted by the Society and Family Caregivers BC to people
within their networks. We also distributed posters through the Vancouver Public Library system. We
shared the survey online through Twitter and Facebook. e BC Seniors Advocate shared the survey
on their Twitter feed, as did the Canadian Network for the Prevention of Elder Abuse, and our online
posts about the survey got re-tweeted regularly.
ere were 28 survey respondents. Key demographic background on survey respondents was:
• 60% cared for their mother; 19% for their father; 14% for their spouse.
• 81% said the person living with dementia lives/lived in BC.
• e majority (56%) had been a caregiver for 1-5 years; 26% for 5-10 years.
• 30% said the person is currently residing in long-term care; 19% said the person resides
with the caregiver; 15% said the person lives alone; 30% said the person living with
dementia had passed away.
• 55% said they made or assisted with decisions with the involvement of another decision
maker. 70% said they experienced challenges working together. e challenges were very
diverse, and no single theme emerged.
1.4 VALUES INFORMING THIS PROJECT
As the CCEL is a division of the BC Law Institute (BCLI), we strive to conduct impartial, non-par-
tisan, and objective research. at said, the partnership with the Society supporting this project was
formed with certain values informing collaboration, research focus, and goals for change. In this
section, we outline some of the values or lenses informing this project and the recommendations for
law, policy, and practice change put forward at the end of this report. e four values were:
• Recognition of human rights and citizenship;
• Respect for the autonomy and agency of people living with dementia;
• Support for inclusion in decision making; and
• Appreciation of lived experience as a knowledge foundation.
1.4.1 Recognition of Human Rights and Citizenship
An overarching value informing this report is a recognition that within the health care system (and
also the larger community) people living with dementia are not only patients or clients who deserve
the best person-centered care available, but also citizens entitled to full respect for their human
rights.
67
In this sense, the report applies a human rights lens to our understanding of health care
consent law in BC.
44 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Both federal and BC human rights laws prohibit discrimination in the provision of
services to the public, which includes health care services.
68
Indeed both the College
of Physicians and Surgeons and the Canadian Medical Association have recognized
that human rights law applies to health care, and in particular, to medical care.
69
Similarly, the Supreme Court of Canada has held that the Canadian Charter of Rights
and Freedoms also applies to the provision of publicly funded medical services.
70
Constitutional scholar Martha Jackman writes that the reasoning in Eldridge v.
British Columbia (Attorney General) suggests that, apart from medical services
provided by a hospital, other quasi or non-governmental bodies and their sta must
adhere to the Charter when delivering government funded health care services, and
that such bodies might include nursing homes and long-term care facilities.
71
ere
is no question that equality rights apply to health care delivery in BC.
e list of prohibited grounds of discrimination contained in all human rights stat-
utes across Canada includes disability. Although the experience of living with demen-
tia varies signicantly from person to person, depending upon various factors—such
as the underlying disease causing neurodegeneration, and the progression of the
disease—dementia meets most contemporary legal denitions of disability.
Prohibited grounds are generally not dened in legislation, and indeed, neither
the BC Human Rights Code nor the Canadian Human Rights Act denes disability.
However, most legal denitions of disability include the experiences of people living
with dementia. e Ontario Code denes disability broadly in a manner that could
include dementia, stating “disability” means:
(a) any degree of physical disability, inrmity, malformation or disgurement
that is caused by bodily injury, birth defect or illness and, without limiting
the generality of the foregoing, includes diabetes mellitus, epilepsy, a brain
injury, any degree of paralysis, amputation, lack of physical co-ordination,
blindness or visual impediment, deafness or hearing impediment, muteness
or speech impediment, or physical reliance on a guide dog or other animal
or on a wheelchair or other remedial appliance or device,
(b) a condition of mental impairment or a developmental disability,
(c) a learning disability, or a dysfunction in one or more of the processes
involved in understanding or using symbols or spoken language,
(d) a mental disorder, or
(e) an injury or disability for which benets were claimed or received
under the insurance plan established under theWorkplace Safety and
Insurance Act, 1997.
72
In its comprehensive Framework for the Law as It Aects Persons with Disabilities,
the Law Commission of Ontario writes that disability can “manifest in physical,
sensory, mental, intellectual, communications or learning impairments and perceived
My dad’s doctor was
exceptional. But it was
uncomfortable with me
because as [his dementia]
progressed, the conversation
turned to just me, just looking
at me and ignoring my dad
like he was two years old. He
was still very aware, and he
was still a human being.
– Family caregiver
1 | Introduction 45
disabilities, as well as the experience of multiple disabilities.”
73
e Supreme Court of Canada has also
taken a broad approach to disability that includes perceptions of inability, noting that a “handicap”
may be the result of “a physical limitation, an ailment, a social construct, a perceived limitation or a
combination of all of these factors.”
74
In this sense, the concept of disability thus includes “both the
experience of socially constructed (or environmental) barriers and the embodied aspects of the experi-
ence of disability.”
75
Disability is stated in the CRPD to include “those who have long-term physical,
mental, intellectual or sensory impairments which in interaction with various barriers may hinder
their full and eective participation in society on an equal basis with others.”
76
is denition clearly
includes the experiences of many people living with dementia.
77
Also, both professional and advocacy sectors have embraced the notion that dementia can be a
disability: dementia is included in the most recent edition of the American Psychiatric Association’s
Diagnostic and Statistical Manual of Mental Disorders, commonly known as the DSM-5 (under
the equivalent term “major neurocognitive disorder”),
78
and the Dementia Alliance International has
taken the position that dementia can be disability.
79
e experience of disability reects a relationship to the structural and social environments in which
people live, including, in particular, the interpersonal relationships that mark our lives. As the recent
majority decision of the Supreme Court of Canada in BC Human Rights Tribunal v Schrenk reminds
us, discrimination exists as a function of relationships of power.
80
For a person living with dementia,
relationships with health care providers have a signicant impact on experience. Stakeholder feedback
throughout this project conrms that health care professionals and sta wield a considerable amount
of power vis-à-vis people living with dementia, both as knowledge-keepers, and as gateways to needed
services and care.
e connection between disability and dementia opens up an equality rights platform from which to
advocate for better treatment of people living with dementia. Consequently, there has been a recent
move by dementia advocacy organizations towards the adoption of a human rights framework as a
means of empowering people with dementia to stand up for their health-related human rights. For
instance, in April 2016, the Council of Alzheimer’s Disease International committed its 83 national
Alzheimer Associations to a human rights-based policy.
81
A human rights approach raises the issue
of whether uneven access to decision making rights linked to dementia amounts to discrimination,
particularly where the denial is linked to prejudicial views of people living with dementia as less able
to make their own decisions.
1.4.2 Respect for the Autonomy and Agency of People Living with Dementia
is project collaboration is grounded in respect for the agency of people living with dementia, view-
ing them as not only as recipients of care, but also as individuals with goals, values and dreams. Respect
for decision making autonomy is a fundamental tenet of modern guardianship and health care consent
law in BC. For example, the Adult Guardianship Act states as one of its guiding principles, that “all
adults are entitled to live in the manner they wish and to accept or refuse support, assistance or
protection as long as they do not harm others and they are capable of making decisions about those
matters.”
82
Further, the Representation Agreement Act and HCCA both stipulate that substitute decision
46 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
making should emphasize a person’s own values and wishes, and move to a best inter-
ests approach only when the person’s wishes are unknown.
e CRPD, the rst binding international human rights instrument to deal with
the rights of people with disabilities, also contains strong language recognizing the
decision making autonomy of people with disabilities.
83
e general principles of the
Convention include:
(a) Respect for inherent dignity, individual autonomy including the freedom to
make one’s own choices, and independence of persons;
(b) Non-discrimination; and
(c) Full and eective participation and inclusion in society…
84
ese general principles align with the basic principles underlying the law of consent
to health care as it has been articulated in court decisions such as Fleming v Reid,
which emphasize the presumption of capacity, autonomy in decision making, and
the right to human dignity.
States have an obligation under the Convention not only to enact appropriate legis-
lation, but also to promote standards and guidelines, to take account of these rights
in their policies and programs, to promote research in goods, services and facilities
as well as new assistive technologies, to promote adequate human rights training for
relevant professionals, and to provide accessible information.
85
e CPRD enunciates
a number of rights which are relevant to the issue of consent in a health care context,
particularly for older people living with dementia in long-term care.
86
In practice, decisions vary signicantly in their complexity. People living with demen-
tia can be capable of making all of their own decisions, some of their own decisions,
or none. Moreover, although dementia ultimately impacts cognition, not all deci-
sions are entirely based on logic and deliberation: “many are intuitive and based on
emotions, needs, values, preferences or habits.”
87
1.4.3 Support for Inclusion in Decision Making
In recent years, Alzheimer’s societies have made a strong push for the development
of dementia-friendly communities worldwide. Dementia-friendly community initia-
tives support the inclusion of people living with dementia in all aspects of society
through education aimed at:
• Reducing stigma;
• Enhancing awareness of, and capacity to recognize, dementia;
• Teaching people to communicate eectively and compassionately with
people living with dementia; and
I think [what’s important is]
constantly educating people
that these are seniors; they are
not children, and the rights
that we have for decision
making for children are not the
same as we have for seniors.
– Social Worker
That rushing is stopping you
from really understanding
what your mother/father/
sibling is experiencing with
dementia… because there’s
activity everywhere, there’s
noise everywhere… doctors
or nurses coming to talk to
you and saying, or asking you
questions, or saying things
to you, and you’re supposed
to try and remember, and
you know it’s just, it’s sort of
like a recipe for disaster.
– Family caregiver
1 | Introduction 47
• Creating physical environments that are welcoming and
accessible for all.
88
Application of a dementia-friendly approach to health care decision making raises
the question of how to best support people living with dementia to participate mean-
ingfully in conversations about their own health care. People with cognitive, memory,
and language issues may face challenges in understanding information, asking ques-
tions, and expressing their views about medication and treatment. ese challenges
can be particularly present in stressful circumstances. is reality does not necessarily
mean they cannot make decisions, or share their perspective; however, it may mean
that meaningful participation requires accommodation or support—and sometimes
just extra time. For some of the participants in our consultation focus groups, partic-
ularly long-time couples, they make decisions in dialogue with a family member, and
so, for them, support means recognition of helpful trusting relationships, and working
in partnership with family caregivers.
Article 12 of the CRPD notes that “persons with disabilities enjoy legal capacity on
an equal basis with others in all aspects of life,” and requires states to “take appropriate
measures to provide access by persons with disabilities to support they may require in
exercising their legal capacity.” In eect, the provision requires that all people, regard-
less of disability, be accorded the right to make their own decisions, and be granted
the support required to exercise their decision making autonomy.
Canada has expressed concern that Article 12 puts the legitimacy of substitute
decision making in question, and as a result has entered a reservation with respect
to Article 12 that “preserves Canada’s ability to continue to use substitute deci-
sion-making arrangements in appropriate circumstances and subject to appropri-
ate and eective safeguards.”
89
However, regardless of this reservation, at the very
least the Convention requires that people with disabilities be provided with as much
support as possible in order to maximize their capacity to participate in decision
making to the point where substitute decision may be required.
Similarly, in BC and Canada courts have interpreted human rights laws to require
fairly signicant accommodation where access to services and rights is limited for a
reason linked to disability. In some instances decision making autonomy can be su-
ciently bolstered by supportive relationships and strategies such that people living
with dementia will have capacity to make their own health care treatment decisions.
In such circumstances resorting to substitute decision making may be an unnecessary
and illegal incursion on autonomy even under domestic human rights law.
In this vein, the Conversations about Care starts from the proposition that engaging
people living with dementia in their health care decisions will not only lead to better,
more person-centered care, but also is a requirement of human rights law. Health care
consent practices that do not support the participation of people living with disabil-
ities generally, and people living with dementia in particular, are thus discriminatory.
48 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
1.4.4 Appreciation of Lived Experience as a Knowledge
Foundation
As discussed earlier, qualitative research was a key source of information throughout
this project in helping us understand how health care consent laws are applied in
practice. For this project we:
• Held consultation focus groups with people living with dementia and
family caregivers;
• Interviewed people who deal with health care consent in their work;
• Conducted an online survey of family caregivers in order to oer busy
caregivers an avenue for participation that might be more accessible; and
• Delivered various presentations on health care consent, many of which
included a question and answer component that oered people an
opportunity to share their views and concerns.
In Conversations about Care we generally use the term consultation instead of
qualitative research, and we describe the consultation scope in more detail above
under “methodology”. In this section we share a few words about why, ideologically,
the CCEL and the Society chose to ground the research in an understanding of
lived experience.
Lived experience refers to “personal knowledge about the world gained through
direct, rst-hand involvement in everyday events rather than through representa-
tions constructed by other people.”
90
is kind of knowledge can be contrasted with
knowledge and information acquired by reading texts. In law reform work, legislation,
court decisions, and legal commentary are dominant sources of information.
We consider lived experience to be a key source of information in helping us to
understand how the law is applied in community—regardless of the project—for a
number of reasons. For this project the lived experience approach allows us to include
the voices of people living with dementia, both in the form of direct quotations, and
also in helping us to better understand and prioritize the issues that point to a need
for change. Given that people living with dementia confront stigma, discrimination,
and social exclusion, it was important to us to include and amplify their voices, partic-
ularly with respect to a project that confronts the practice of health care professionals,
sta, and institutions that wield a great deal of power. is project on health care
consent seeks to support people living with dementia to be heard not only in their
own personal lives, but also in terms of our law reform work. In some BCLI projects
we oer community the opportunity to comment on a consultation paper; for this
project we did not want to produce any commentary on the law until we had rst
heard from people living with dementia.
I’ve worked alongside some
very amazing registered nurses
in all environments, home
health—you know name it.
I’ve watched them all. So I’ve
seen registered nurses who will
quickly forget their training to
analyze and balance out the
disease process. They’ll just go
straight to drugs. They take
the path of least resistance.
– Nurse
1 | Introduction 49
Although some researchers might limit the notion of lived experience to people who experience
oppression, for the purposes of this project we also consulted people who deal with health care consent
as part of their work. We asked stakeholders from health care about what is working well, and what is
not, and we asked them to identify challenges to best practice. We also spoke to lawyers and advocates
about the law and practice of health care consent for people living with dementia. In some instances
our Project Advisory Committee members also contributed lived experience that helped us to under-
stand the issues in practice. We hope that building a law reform report around challenges identied
in community will help us to develop a report that identies problems and solutions that matter most
to British Columbians.
1.5 STRUCTURE OF THIS REPORT
is report is divided into six chapters.
• Chapter 1 introduces the project rationale, scope and methodology. e chapter also
identies values underlying project focus and recommendations.
• Chapter 2 sets out the social science foundation informing our legal research, providing a
basic introduction to dementia, medication, and poly-pharmacy.
• Chapter 3 sets out health care treatment decision making law in BC, including the
dierent types of supportive and substitute decision makers and their rights and duties.
We also discuss avenues for challenging health care decisions, decision making authority,
and incapability assessments, and identify the overlap between health care consent and
mental health law for people living with dementia.
• Chapter 4 describes the law governing restraint in long-term care, and the meaning of
a chemical restraint. We compare BC with the legal framework for restraint in other
jurisdictions.
• Chapter 5 maps out the people and institutions engaged in obtaining consent and
providing medication to people living with dementia in long-term care. We review the
regulation and education of health care professionals and long-term care facility sta on
the topic of health care consent, and provide a brief overview of stang and physician
remuneration.
• Chapter 6 summarizes what we learned from consultation with people living with
dementia, family caregivers, health care professionals, and other stakeholders who engage
with health care consent issues in their work.
• Chapter 7 brings together legal research and consultation ndings for discussion of
recommendations aimed at enhancing compliance with, or improving, the law regarding
health care consent in BC. We set out 34 recommendations.
e report includes four appendices:
• Appendix A lists the 34 recommendations.
• Appendix B is a table of the key informants we interviewed as part of consultation.
50 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
• Appendix C outlines the questions we asked key informants.
• Appendix D is a copy of the online family caregiver survey.
Each chapter of this report is fairly self-contained. Chapters 3-5 set out dierent aspects of the law
that are relevant to understanding the overall legal landscape governing consent to health care for
people living with dementia. ese chapters are intended to summarize but not criticize the law.
Chapter 7 is quite lengthy, and can be read on its own. However, some nuances will be missed if a
reader does not review the whole report. For the sake of completeness and clarity, we include in the
chapter aspects of the previous chapters—both legal material and consultation ndings— that are
relevant to the discussion of each issue. As a result, readers will nd there is some repetition of the
content of other chapters in Chapter 7.
We include anonymous quotations from consultation participations throughout the report. e quota-
tions are intended to help readers to better understand the urgent practical issues and personal chal-
lenges that arise for people living with dementia, family caregivers, health care professionals, advocates,
care facility sta, and others in the context of health care decision making. e quotations do not reect
in the views of the CCEL or the Society, and they sometimes reect misunderstandings about the law.
2 | Introduction to Dementia 51
CHAPTER 2
Introduction to Dementia
They are saying they have 41 patients. They don’t have time to understand people. You
know, when you have Alzheimer’s you don’t have a lot of verbal capacity, so swatting
something away is her way of communicating.
Family caregiver
is chapter provides a basic introduction to non-legal concepts critical to understanding themes
emerging from research and consultation, and recommendations found in Chapter 7 of this reort.
is chapter:
• Denes dementia, including describing dierent types of dementia and its stages;
• Introduces the concepts of polypharmacy, and behavioural and psychological symptoms
of dementia;
• Explains the relationship between a diagnosis of dementia and an assessment of
incapability; and
• Reviews various types of medication prescribed for people living with dementia, including
some of their benets and side-eects.
Readers with a specialized health or medical practice may already be very familiar, if not much more
familiar, with the concepts explored in this chapter. We hope that people working in law and policy, and
health professionals not specialized in dementia, will nd this chapter provides a helpful foundation.
52 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
2.1 UNDERSTANDING DEMENTIA
2.1.1 What is Dementia?
Dementia
91
is a general term used to describe a range of symptoms caused by disorders of the brain.
92
Dementia is caused by physical changes in the brain, and is a progressive and degenerative disease,
meaning symptoms will worsen over time.
93
Dementia degrades mental function as a result of loss of
cells and breakdown in connections within the brain over time, a process referred to as “neurodegener-
ation.”
94
e equivalent term for dementia used in the American Psychiatric Association’s Diagnostic
and Statistical Manual of Mental Disorders, 5
th
edition, commonly known as the DSM-5, is “major
neurocognitive disorder”.
95
It is challenging to generalize about dementia. e experience of dementia varies signicantly from
person to person. e Alzheimer Society of Ireland writes:
Each person’s experience with dementia is unique. Not every person will experience all the
signs and symptoms of their type of disease. Other illness or health care issues can occur.
As a result, how the disease will progress varies from one person to another.
96
For some, dementia advances quickly; for others, it takes years to reach what is considered the advanced
stage, where 24-hour care is required.
97
Although research tends to suggest the average life expectancy
is approximately 4.5 years after diagnosis, this data is based primarily on people living with dementia
in their 80s and 90s, and people diagnosed at a younger age tend to live longer (an average of over 10
years if diagnosed between the ages 65-69).
98
Further, average life expectancy can vary depending on
the type of dementia (discussed below), and there is limited research on life expectancy for people
diagnosed with early or younger onset dementia (diagnosed prior to age 65).
99
All this is to say that
health care for people living with dementia is not primarily about end of life care. People can live with
signicant independence and function for many years following a diagnosis, and may be capable of
making their own health care decisions.
Symptoms of dementia can include diculty in thinking, problem-solving, communicating, and
reasoning, as well as loss of memory, the ability to focus and pay attention, and visual perception.
Changes in mood, emotional control, and social behaviour often occur.
100
As the disease progresses,
these symptoms will reduce a person’s ability to perform the activities of daily life, such as the ability
to maintain personal hygiene, dressing, and eating. People living with dementia may not remember
the location of the bathroom in a house where they lived for forty years, and at advanced stages, may
lose the power of speech.
e Alzheimer’s Association of America writes that “dementia is often incorrectly referred to as “senil-
ity” or “senile dementia,” which reects the formerly prevalent but incorrect belief that serious mental
decline is a normal part of aging.”
101
e Alzheimer Society of Canada indicates that “almost 40
percent of people over age 65 experience some form of memory loss”, characterizing memory loss
without the underlying presence of disease as “age-associated memory impairment.”
102
While some
memory loss can be a normal part of the aging process—such as increasing diculty recalling the
names of new acquaintances or forgetting tasks—people living with dementia struggle with more
2 | Introduction to Dementia 53
signicant memory issues, such as not recognizing a family member, not recalling the names of family
members, or needing to pause frequently to nd the correct word when communicating.
103
2.1.2 Types of Dementia
Dementia is not a specic disease. ere is a wide spectrum of types of cognitive impairment and
dementia, and these conditions have varied causes and consequences. Many diseases can cause demen-
tia, including Alzheimer’s disease, vascular dementia, Lewy Body disease, head trauma, frontotemporal
dementia, Creutzfeldt-Jakob disease, Parkinson’s disease, Huntington’s disease dementia, and demen-
tia due to HIV, among others.
104
ese conditions can have similar and overlapping symptoms. Below
we discuss some similarities and dierences between the more prevalentform of dementia.
Alzheimer’s disease is the most common form of dementia, followed by vascular dementia (with or
without Alzheimer’s), dementia with Lewy bodies, and frontotemporal dementia. People can also have
a combination of dierent types of dementia.
105
Figure 1: Prevalence of Dierent Types of Dementia
106
Alzheimer’s Disease
Alzheimer’s disease is the main cause of dementia, accounting for 60 to 80 percent of cases.
107
Alzheimer’s occurs due to physical changes in the brain, including a buildup of certain proteins and
nerve damage.
108
e disease often progresses slowly. Sources provide diverse statements regarding
average life expectancy after diagnosis, ranging from four to eight
109
, and eight to ten years.
110
Some
people, however, may live as long as 20 years after diagnosis, depending on other factors.
111
Alzheimer’s
Alzheimer’s disease
47%
Vascular
9%
Lewy Body
9%
Frontotemporal
5%
19%
2%
3%
54 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
causes changes in the brain years before signs of the disease become evident.
112
is time period is
referred to as preclinical Alzheimer’s disease.
113
Difficulty remembering newly acquired information is the most prevalent early symptom of
Alzheimer’s because the disease typically originates in the part of the brain responsible for learn-
ing.
114
However, as the disease progresses, and damage spreads throughout the brain, other symptoms
emerge, including increasing confusion, mood and behaviour changes, and increasing diculty with
basic activities ranging from speaking to walking.
115
Vascular Dementia
Next to Alzheimer’s the most common types of dementia are vascular dementia co-occurring with
Alzheimer’s (19%), and vascular dementia (9%)—see the above diagram.
116
Vascular dementia is
caused either by blocked blood vessels in the brain (a lack of blood or ischemia), or by bleeding within
the brain (hemorrhage) which occur as a result of strokes,or other brain injuries.
117
Since brain
damage is often caused by an evident stroke, changes in thought processes can be sudden, as compared
with Alzheimer’s disease.
118
Symptoms will vary depending on the damage to blood vessels, and the part of the brain impacted;
as a result, a person living with vascular dementia might not experience signicant memory loss.
119
Common post-stroke symptoms of vascular dementia can include diculties with language that aect
speaking or understanding—a condition known as aphasia.
120
Where the vessel and nerve damage is
caused by multiple smaller strokes, or other forms of disease, the changes in a person’s abilities and
behaviour will be more gradual, and can include: “impaired planning and judgment; uncontrolled
laughing and crying; declining ability to pay attention; impaired function in social situations; and
diculty nding the right words.”
121
Not all cognitive and other symptoms of brain damage following stroke indicate vascular dementia.
When memory, thinking, and reasoning problems have been severe enough to have a “signicant
impact on daily life”, a person may be diagnosed with vascular dementia.
122
A person with vascular
dementia may get worse with each stroke, or as a result of blood vessel damage occurring over time
without resulting in stroke. Decline can thus also occur with leaps and plateaus.
123
Dementia with Lewy bodies
Lewy Body Dementia accounts for approximately 5-15% of dementia cases.
124
is type of dementia
occurs due to clumps of protein accumulating in dierent parts of the brain.
125
In addition to memory
loss and confusion, dementia with Lewy bodies can often be distinguished through additional symp-
toms such as sleep disturbances, hallucinations, imbalance, and movement diculties.
126
Dementia Associated with Parkinson’s Disease
Parkinson’s disease is a neurodegenerative condition that is caused by the death of cells that normally
produce dopamine.
127
e disease is most commonly associated with problems related to movement
and motor control, resulting in noticeable tremors.
128
It is estimated that 50 to 80 percent of people
2 | Introduction to Dementia 55
living with Parkinson’s disease will eventually experience Parkinson’s disease dementia, with an average
time of ten years for the development of the dementia from the onset of Parkinson’s.
129
Dementia asso-
ciated with Parkinson’s disease can present with: “changes in memory, concentration and judgement;
trouble interpreting visual information; mued speech; visual hallucinations; delusions, especially
paranoid ideas; depression; irritability and anxiety; and sleep disturbances.”
130
Frontotemporal Dementia
Frontotemporal dementia, denoted by the brain region in which cell loss rst occurs, refers to a group
of illnesses that are characterized by changes in personality, behaviour, and language.
131
As a result,
memory loss may not be predominant in the early stages of the illness.
132
Frontotemporal dementia
can occur due to a range of dierent underlying disorders causing degeneration of the frontotem-
poral region.
133
Unlike other forms of dementia, frontotemporal dementia is not strongly associated
with aging.
134
Mixed Dementia
Mixed dementia is dementia in which multiple types of dementia-causing brain abnormalities are
present.
135
e most common scenario is Alzheimer’s in combination with vascular dementia, but
other forms of dementia can co-occur.
136
2.1.3 Stages of Dementia
Dementia is a progressive degenerative condition. As dementia progresses, signicant changes to the
person’s personality, abilities, memory, and mood can occur. Health clinicians generally refer to stages
of dementia reecting mild, moderate, and severe symptoms; however, the number of stages identied
in literature varies. Viewing dementia through a lens of stages or phases can be helpful in illustrat-
ing the progressive nature of dementia; however, the approach can over-simplify disease progression.
In reality, the dementia journey may be dierent for people living with dierent types of dementia,
and factors can impact progression, including: “emotional resilience”; overall physical well-being and
health; medication usage; and available support.
137
As a result, changes in people’s capacity to live
independently, and to make their own health care treatment decisions, can accompany each stage
of dementia.
e BC Ministry of Health has characterized the stages of dementia in the following manner:
Mild: e person who has mild dementia is still able to function somewhat independently.
However, memory loss and thinking impairment are present, often with mild word-nd-
ing diculties. Common challenges include diculty remembering basic words and
people’s names. Caregivers may report stress due to the functional changes in the person
with dementia.
Moderate: e person who is in a moderate stage of dementia will experience further
decreases in memory, thinking, language and concentration skills. is results in an
56 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
increased need for supervision and assistance. In this stage there can also be changes in
behavior, and a potential for getting lost. e caregiver is at risk for stress, depression,
general health deterioration, and loss of productivity at work.
Severe: e person who is in the severe stage of dementia experiences a considerable loss
of memory, language, and living skills. As a result, they cannot be left unsupervised and
require assistance in all activities of daily living. A high level of dependence on the care-
giver can increase the risks to the caregiver’s health and ability to continue to manage care
at home. Severe dementia often requires admission to a residential care facility, and may
indicate the need for end-of-life-care.
138
e above breakdown, like many dementia scales, tends to match best the progression of disease
for people diagnosed with Alzheimer’s as compared with other forms of dementia.
139
Initial mile-
stones often include discontinuing driving, needing help with daily activities, developing new health
care professional relationships, and receiving a diagnosis.
140
As the condition progresses, the need
for assistance increases, and eventually, almost constant supervision is required. As noted by Hanson
et al., “[a]dvanced dementia is characterized by profound memory decits, inability to recognize
family members, sparse speech, incontinence, and dependency in all activities of daily living, includ-
ing eating.”
141
Figure 2: Stages of Dementia
142
As mentioned earlier, the progress of brain damage, and consequent experience of symptoms of
dementia, will be impacted by the type of dementia. For people living with vascular dementia, changes
can be sudden, especially if a person experiences repeated major strokes; change will be more gradual
if strokes are smaller. For people with Lewy Body dementia, “abilities may uctuate drastically, even
during the course of day” in the early stages of the disease.
143
A person living with frontotempo-
ral dementia may present initially with behavioural changes but good memory. Indeed, the DSM-5
description of “major neurocognitive disorder”, the American Psychiatric Association’s equivalent
Expected Progression of Dementia
EARLY STAGE
Memory loss
Irritable
Withdrawn
Abusive language
Mood swings
MIDDLE STAGE
Getting lost
Delusions
Hallucinations
Agitation/Anxiety
Aggression
Depression
May hurt self or others
LATE STAGE
Lose speech
Incontinence
Swallowing issues
Need help with all care
2 | Introduction to Dementia 57
term for dementia, is broad; memory loss, which is typically associated with a general understanding
of dementia, is not a required symptom for a diagnosis.
144
2.1.4 Diagnosing Dementia
A dementia diagnosis can present a gateway to better support and care, and early diagnosis can improve
quality of life and support advance planning.
145
However, there can be many challenges to diagnosing
dementia. e Ministry of Health identies the following barriers to diagnosis:
• A general lack of understanding of dementia and misconceptions about what constitutes
“aging” without the presence of underlying disease;
• Widespread fear regarding the stigma attached to a diagnosis of dementia; and
• Lack of professional condence and skills required to provide an accurate diagnosis.
146
A proper diagnosis of dementia requires an investigation of a person’s overall health. Other health
issues can cause behaviours and other symptoms that may appear initially to be a sign of onset of
dementia, some of which can be resolved with treatment, such as urinary tract infections, thyroid
problems, medication side-eects, and vitamin deciencies.
147
Although a person’s family physician is
involved in the process, and makes the referral to specialists, it is likely a specialist—such as a geriatric
psychologist, a neurologist, or a geriatrician—who will make the dementia diagnosis.
148
e DSM-5 diagnostic criteria for a major neurocognitive disorder are:
A. Evidence of signicant cognitive decline from a previous level of performance in one or more
cognitive domains (complex attention, executive function, learning and memory, language,
perceptual-motor, or social cognition) based on:
1. Concern of the individual, a knowledgeable informant, or the clinician that there has been a
signicant decline in cognitive function; and
2. A substantial impairment in cognitive performance, preferably documented by standardized
neuropsychological testing or, in its absence, another quantied clinical assessment.
B. e cognitive decits interfere with independence in everyday activities (i.e. at a minimum,
requiring assistance with complex instrumental activities of daily living such as paying bills or
managing medications).
C. e cognitive decits do not occur exclusively in the context of a delirium.
D. e cognitive decits are not better explained by another mental disorder (e.g. major depressive
disorder, schizophrenia).
149
As compared with earlier versions of the DSM-5, memory impairment is no longer a requirement in
the diagnosis. A diagnosis of Alzheimer’s specically does require memory impairment.
150
e BC Ministry of Health recommends that objective evidence to support the diagnosis be obtained
through use of a standardized assessment tools, such as:
58 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
• Standardized Mini-Mental State Examination to test cognition;
• Clock Drawing Test to test executive functioning; and
• Montreal Cognitive Assessment to test for mild cognitive
impairmentand early dementia.
151
However, the diagnostic process is not at all reducible to these well-known assess-
ment tools. e diagnostic process would generally include a patient history, physical
exams, and neurological tests,
152
input from the person who may have dementia, and
possibly collateral information from family and caregivers. e process raises ethical
questions about how assessors prioritize the input from the person who may have
dementia with collateral sources when they don’t match. Ageism permeates medical
practice as much as any other environment, and so there is always a risk that the
perspective of an older person will be accorded less respect.
A diagnosis of dementia is intended to encompass the spectrum of severity, ranging
from the mildest to the most severe stages of dementia. What distinguishes dementia
from mild cognitive impairment is the extent to which the ability to function at work
or in usual daily activities is diminished. is assessment of ability and function in
turn rests on a judgment made by a skilled clinician, based on the circumstances of
the patient, as well as the description of daily life obtained from both the patientand
a knowledgeable external referee.
153
However, it can be dicult to identify a precise
threshold between mild cognitive impairment and dementia on the one hand,
154
and
mild dementia and normal aging on the other. As a result, there has been considerable
controversy over the decision to include mild cognitive impairment in the DSM-5.
155
2.1.5 Dementia and Mental Capacity for Decision Making
As noted above with respect to the DSM-5 criteria for major neurocognitive disor-
der, a diagnosis of dementia is not determinative of mental capacity to make any or
all health care decisions. As we discuss in Chapter 3, capacity for decision making
is not generalizable; it exists relative to a particular decision. A clinical interview
oers the best approach to assessment of incapability.
156
e MacArthur Competence
Assessment Tool for Treatment “is emerging as the ‘gold standard’ for assessing
capacity to consent to medical treatment.”
157
e tool examines four abilities:
1. Understanding of the disorder and its treatment, including associated
benets/risks;
2. Appreciation of the disorder and its treatment (requires insight into how
these will aect the patient individually);
3. Reasoning processes, which examines why and how a decision was made
and the potential to compare consequences; and
4. Ability to express a choice.
158
There is a lot of ageism, and
almost like an assumption that
people are unable to consent.
– Nurse
2 | Introduction to Dementia 59
Research indicates people with mild to moderate dementia are able to evaluate the risks and benets
of treatment options in order to make treatment decisions,
159
and express preferences.
160
People living
with dementia are not a homogenous group, and a dementia diagnosis does not mean people imme-
diately either stop talking, or otherwise expressing themselves. Moreover, even people with advanced
dementia can still vocalize, express joy and sadness, display a sense of humour, communicate a desire
to eat or not eat, dance, express a wish for aection, intimacy, and touch, and so on. Further, as Smebye
et al. note:
[N]ot all decisions are based on logic and deliberation; many are intuitive and based on
emotions, needs, values, preferences or habits. Even with signicant cognitive decline,
persons with dementia can still be “valuers” i.e. they can, on the basis of what they unre-
ectively identify with, still evaluate, interpret and derive meaning in their lives. e ability
to value is independent of cognition and the pertinent question is if the person can still
value and experience.
161
erefore, in spite of cognition challenges, research indicates that people living with dementia may
have a clear sense of preference and values, and be capable of expressing their views.
Philosophers and legal theorists have questioned whether personality or identity changes precipitated
by dementia which impact values and preferences mean that people living with dementia can no longer
make authentic decisions.
162
e issue is whether new or altered preferences can still inform authen-
tic health care decision making—that is to say, decisions that reect a person’s true wishes. Writers
distinguish between the self with dementia and the original self. e well-known philosopher Richard
Dworkin has argued that the views of this original self ought to take precedence.
163
ere is nothing within the law that prevents us from changing our mind about the things that matter
to us, regardless of disability or disease. However, for people living with dementia, there may be a
related temptation to pathologize value changes as reducible to brain degeneration. Certainly, people
living with dementia are just as likely as anyone to change values and preferences as a result of life
experience. Indeed, as a dementia diagnosis can be a life-changing or traumatic event, some changes
in values or preferences can be expected. Also, arguably, the experience of living with dementia or any
kind of disability brings with it a new kind of intimate knowledge grounded in experience that could
impact decision making.
Still, changes in values and preferences may present ethical dilemmas regarding which values to
honour in the context of substitute decision making.
164
Determining whether such changes impact
on decisional capacity requires a proper incapability assessment addressing capacity for the specic
decision at issue.
2.1.6 Behavioural and Psychological Symptoms of Dementia
e term Behavioural and Psychological Symptoms of Dementia (BPSD) is commonly used by
psychiatrists, clinicians, academics, and others to refer to “symptoms of disturbed perception, thought
content, mood or behaviour that frequently occur in patients living with dementia.”
165
e term is
60 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
intended to capture diverse, non-cognitive symptoms of dementia, such as delusions, hallucinations,
depressive symptoms, agitation, and hostility.
166
From a clinical perspective, understanding BPSD is
considered integral to making appropriate recommendations for treatment, including the prescription
of psychotropics, and both pharmacological and non-pharmacological approaches. In this report we
occasionally use the term BPSD because it is referenced in secondary sources and also consultation;
however, we also wish to highlight some concerns regarding its use. We prefer the term dementia-re-
lated behaviours, and we explain our rationale for using this alternative expression in this section.
While cognitive impairment is central to a diagnosis of dementia, research indicates that non-cogni-
tive symptoms are almost always present throughout the illness. Some studies have suggested these
psychiatric symptoms are present in around 80% of people living with dementia;
167
others have stated
up to 98% of people living with dementia will be aected at some point in the disease’s life-course.
168
Research indicates that depression and apathy are frequently observed in people living with mild
cognitive impairment and early stage Alzheimer’s disease, which may increase in frequency as demen-
tia worsens. Delusions, hallucinations, and aggressive behaviour are more common in moderate to
severe stages.
169
Apathy is among the most frequent and enduring behavioural symptom identied
across all dementia stages. As noted by Gitlin et al, “[a]gitation, another chronic and persistent problem
reported by families, involves emotional distress, excessive psychomotor activity, wandering, aggressive
behaviours, irritability, disinhibition, and vocally disruptive behaviours.”
170
Symptoms often co-occur,
and are associated with functional and cognitive decline.
171
ere is great variety in experience. Although symptoms occur at any disease stage, some appear more
often than others.
172
While symptoms occur universally for almost all people living with dementia,
173
some types of behaviour or symptoms can be specic to the type of disease.
174
For example, depression
is most common in vascular dementia, and hallucinations are more frequent in Lewy body disease than
in Alzheimer’s disease.
175
Mention of the term BPSD is central to this report because the concept is tied to use of anti-psychotic
medication to manage, change, or limit the behaviours of people living with dementia; however, use of
the term raises some concerns. Although BPSD sounds like it is a diagnosis, the term is in fact refer-
ring to a broad range of behaviours that arise in the context of a dementia. Moreover, it is not clear
that the behaviours are exclusively due to the neurodegenerative disease. Many could be situational,
interpersonal, or psychological in causation. e behaviours could be the expression of grief, denial,
loss of control, shame—indeed very reasonable responses to the experience of living with an incur-
able, progressive disease that destroys the brain, and is associated with so much stigma, coupled with
increasing challenges with language and communication.
One of the challenges with the term is that it locates the problem solely in the person living with
dementia, when in fact behavioural symptoms are often multidimensional in cause, as outlined by
the P.I.E.C.E.S. Canada model.
176
Careful assessment of the contributing factors can identify envi-
ronmental, interpersonal, and physiological factors that may be contributing to the behaviour of
the person living with dementia. A number of Project Advisory Committee members noted that
the BPSD approach contributes to exclusively interpreting the person’s situation through the lens
of dementia, which often leads to more fearful or reactive responses to situations than expected or
2 | Introduction to Dementia 61
required. e sensitivity of the person living with dementia to external circumstances means reactive
approaches can be counter-productive.
Behavioural symptoms of dementia may result from more than one cause. As Smith and Buckwalter
explain, the type and extent of symptoms result from complex interactions among the type of dementia,
longstanding personality traits and patterns of behaviour, drug interactions, and environmental factors:
…Agitation can be caused by the need to urinate, as well as by depression. Anxiety and
sudden withdrawal at mealtimes may result from a noisy, crowded, or chaotic environment,
the person’s inability to identify utensils or the food itself (because of agnosia), or dyspha-
gia and the fear of choking. Hitting, biting, and screaming at bath time may be the result
of pain, uncomfortable room or water temperature, embarrassment or a lack of privacy, or
the fear of sexual assault. …. Considerable observation is often required to understand the
“problem” from the perspective of the person with dementia.
177
In this sense, what have been called BPSDs are increasingly recognized as “an attempt to communicate
an un-met need… Within this framework, dementia-related behaviours are considered meaningful
expressions, ranging from disengagement (e.g., apathy) to mild discomfort (e.g., pacing) to urgent
need (e.g., physical aggression).”
178
As people living with dementia experience increased vulnerability
to their environment, “behavioural symptoms may result from the conuence of multiple, some poten-
tially modiable, interacting factors, including internal (e.g., pain, fear) or external (e.g., over-stimu-
lating environment, complex caregiver communications) features.”
179
People living with dementia can also be experiencing other kinds of mental illness, which may or may
not be signicantly related to the dementia. Mental illness can be dicult to diagnose in people living
with dementia due to problems with language, memory, and insight. As noted below:
Depression is common in [Alzheimer’s disease], with a prevalence of approximately 20%
and even higher in [vascular dementia] and dementia with Lewy bodies]. It can be very
dicult to diagnose depression accurately in dementia. e patient may not be able to
report their symptoms reliably due to impaired memory and insight. Observations and
collateral history can therefore be important in making the diagnosis. Depression symp-
toms are often present in patients with dementia in the absence of coexistent depression.
180
Although BPSD has become a practical label for dierent types of behaviour linked to dementia, the
generalization does not capture the diverse and unique experiences of people living with dementia
struggling to cope with disease, and exhibiting behaviours that many, including sometimes themselves,
nd challenging. It is thus a broad term that must be applied with care. We use the term occasionally in
this report because it is commonly invoked in practice; however, the term remains problematic to the
extent that it generalizes so broadly, and risks pathologizing a normal struggle with disease progression
and stigma, loss of independence, and communication and environmental challenges.
62 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Dementia and Aggressive Behaviour
One of the most challenging behaviours linked to dementia is verbally and physically aggressive
behaviour. e rate of aggressive behaviour tends to correlate with the loss of independence and cogni-
tive decline.
181
For people residing in the community, such behaviour has several adverse consequences,
correlating strongly with injury, mental suering, cognitive decline, loss of independence, hospital-
ization, earlier admission to an institutional setting, such as long-term care, and other sub-optimal
outcomes.
182
Physically aggressive behaviour also aects caregivers, leading to chronic mental distress,
depression, injury, and abuse.
183
Aggressive behaviour is closely associated with moderate to severe depression, male gender, and
greater impairment in activities of daily living, even after adjustment for delusions, hallucinations,
sleep disturbance, and severity of cognitive impairment.
184
As noted by Talerico, Evans and Strumpf,
“[a]ggression is seen most often in response to personal space invasion during care activities like bath-
ing.”
185
Increasingly research is adopting the viewpoint that aggressive behaviour may represent an
expression of unmet needs, rather than primarily manifestations of the bio-physiology of the disease.
As Algase et al. explain:
When cognitively impaired (CI) persons can no longer meet their needs or goals, they may
become aggressive to deal with the resulting frustration. us, aggression might reect
diminished ability to deal with frustration or ambiguity. Some neuropsychological changes
such as disinhibition, may interfere with their ability to self- regulate or execute behavior
independent of environmental inuences. A person with a hostile pre-morbid personality
may become more aggressive as damage to the cortex results in disinhibition of these
tendencies. Likewise, inappropriate assistance with activities of daily living (ADLs) may
threaten personal abilities, obstruct goal-directed activity and lead to aggression.”
186
More studies and educational initiatives are highlighting that identifying unmet needs in people living
with dementia may improve the precision and ecacy of interventions, and therefore the quality of
life for both people living with dementia and their caregivers.
187
Studies have found that impaired
communication is associated with all forms of aggressive behaviour, including circumstances where the
older person is also either depressed or disoriented. For example, in videotaped sequences of dementia
patients exhibiting agitated behaviours, researchers concluded that agitation frequently acted as a form
of communication.
188
Ragneskog et al. note that “[t]wo underlying reasons seem to be that the patient
had loss of control over the situation and [has] decient autonomy.”
189
2.2 MEDICATION FOR TREATING SYMPTOMS OF DEMENTIA
Although there is presently no cure for most forms of dementia, and no medication that can alter the
progression of the disease, there are drugs that can temporarily slow the worsening of symptoms in
some people.
190
People who respond well to treatment can experience improvements in their quality
of life for several years.
What choice did I have to
move her to any other place
in the [community]? Cause
I toured them all, and I was
horried by what I had seen,
and she was still cognitive
enough to know that she
didn’t like them either. So
I agreed to have her on a
tranquilizer. So I have to lie
to her every time she gets
on that theme about how
much she doesn’t want to
take this, this pill, so I tell her
it’s for an allergy, and I do that
therapeutic bbing thing.
– Family caregiver
2 | Introduction to Dementia 63
e samemedications used to treat Alzheimer’sare among the drugs sometimes
prescribed to help with symptoms ofother types of dementias.In this Part 2 we
provide a brief overview of two categories of medication:
• Medications to address memory symptoms and cognitive changes,
including changes in language, thinking abilities, and motor skills; and
• Medications to manage mood or behavioural issues, such as depression,
insomnia, hallucinations and agitation.
In some non-typical situations, reversible dementia can be caused by other underly-
ing problems, such as hypothyroidism,
191
highlighting the importance of a full medi-
cal assessment for a person presenting with cognitive symptoms. A person living
with dementia may or may not have other health conditions for which medication
or other treatment has been recommended. ese medications are not discussed in
this chapter.
is chapter focuses on pharmacological interventions because it is intended to
provide the background for a discussion of informed consent to health care. However,
non-pharmacological approaches can also alleviate some symptoms of dementia,
192
and likely form part of a robust health care plan. Alzheimer’s societies recognize
many lifestyle choices as being supportive of brain health, we well as overall well-be-
ing, such as:
• Staying socially connected;
• Participating in regular physical activity;
• Engaging in mentally stimulating activities;
• Getting adequate sleep;
• Reducing stress; and
• Maintaining a healthy diet and good nutrition.
193
Some of the above goals can be harder to achieve when living with dementia, for
example, people with dementia may forget to eat, lose interest in preparing meals, or
not eat a healthy combination of foods. ey may also forget to drink enough, leading
to dehydration or constipation.
194
In addition, sleep is often profoundly disturbed
in people living with dementia, which can lead to problems with memory, cogni-
tion, problem solving and daily function, as well as increase the risk of depression
and aggression.
195
Further, people living with dementia often experience increased
stress as a result of impaired problem solving, confusion about their environment, and
over-reactivity of the limbic part of their brain, which helps control emotion, learn-
ing, and memory. Consequently, Alzheimer’s Societies also emphasize the impor-
tance of developing stress management strategies.
196
64 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Although psychotropic medications have been the focus of much media attention, they represent but
some of the types medication that may be prescribed for a person living with dementia. e right to
informed consent to health care applies to all forms of medication.
2.2.1 Medication for Memory Loss
Currently there are two main classes of drugs used to treat the symptoms of Alzheimer’s disease, which
may also help with mild-moderate vascular dementia. ey are:
• Acetylcholinesterase inhibitors; and
• Memantine.
197
ese medications are not eective for ameliorating cognitive symptoms in all types of dementia, for
example, the use of cholinesterase inhibitors and memantine for the frontotemporal dementia is not
shown to slow the progression of illness.
198
Acetylcholinesterase inhibitors
Acetylcholinesterase inhibitors are the foundational treatment of Alzheimer’s disease. ey help by
improving “the ability of impaired nerve endings to transmit messages from one nerve cell to another.”
199
ree cholinesterase inhibitors are available in Canada to treat symptoms in people with mild to moder-
ate Alzheimer’s disease: Aricept, Exelon, Reminyl.
200
Positive benets, which include increased attention,
thinking, memory, praxis, language, comprehension and communication, appear to be applicable to mild,
moderate and severe Alzheimer’s disease.
201
Depending on the medication, the user may experience dierent side eects. e main side eects of
these drugs include gastrointestinal symptoms, like diarrhoea and nausea, loss of appetite and sleep
disturbances (vivid dreams, wakefulness, or sedation).
202
In people with cardiac conduction disorders,
serious side eects may include a slowed heart, otherwise known as bradycardia.
203
At some point in the progress of the disease, the nerve endings will degenerate to the point that that these
drugs are no longer eective.
204
ese medications may be helpful for two to three years, possibly longer.
205
Memantine
Memantine (also known as Ebixa, Novo, or Teva-Mamantine)
206
is prescribed alone or in combi-
nation with a cholinesterase inhibitor.
207
Memantine regulates the activity of glutamate, which is a
neurotransmitter in the brain that is key to learning and memory.
208
Excess glutamate can be released
from damaged cells, thereby encouraging further cell damage.
209
e scientic evidence for the eectiveness of Memantine is positive. In a systemic review of double-
blind, parallel-group, randomized control trial studies of memantine showed improvement in cogni-
tion, activities of daily living, and behaviours in people with moderate to severe Alzheimer’s after 6
months of use.
210
e most frequently reported adverse events in memantine trials were dizziness,
2 | Introduction to Dementia 65
headache and confusion, and a small group of patients have reported agitation.
211
Research indicates
that acetylcholinesterase inhibitors and memantine may have an eect on behavioural symptoms.
212
2.2.2 Medications for Management of Psychosis and Other Behavioural
Disturbances
e choice of strategy for treatment of dementia-related behaviours raises challenging questions.
Pharmacological approaches are often considered “o label” use, which refers to the fact that the
drugsare being used for an unapproved indication, or in an unapproved age group, dosage, or route of
administration
213
—in this case often for older people, or people living with dementia.
Best practices indicate that it may be appropriate to consider psychotropics for people living with
dementia when:
• there is a signicant risk of harm to the patient or others; or
• agitation with aggressive symptoms [is] persistent, recurrent or severe enough to cause
signicant suering and distress to the person in care, or may cause signicant interference
with the delivery of care.
214
However, use of such medication for people living with dementia has been well-studied, and shown to
have either signicant side eects, or limited benets. A such, best practices indicate they should only
be used with caution, and only in very specic circumstances.
215
Many dierent classes of medications have been used to treat dementia-related behaviours. We discuss
them briey below.
Anti-psychotic Medicines
Low doses of anti-psychotic medicines may help relieve severe psychotic and behavioural symptom,
like agitation, wandering, and self-harm.
216
Drugs that are sometimes used to treat hallucinations,
paranoia, and severe agitation in people who have dementia include aripiprazole, haloperidol, and
risperidone.
217
When such medications are given to people who are older and frail, they induce a leth-
argy that can mask symptoms of other problems.Possible side eects of the use of anti-psychotics for
older people include:
• Sedation and cognitive decline;
• Extrapyramidal symptoms, such as restlessness, tremors, rigidity, and
involuntary movement;
• Anticholinergic eects, such as constipation, urinary retention, and blurred vision;
• Cardiovascular eects, such as orthostatic hypotension (low blood pressure
upon standing
218
);
• Weight gain; and
• Diabetes.
219
66 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
e side eects may make some symptoms of Alzheimer’s disease worse, such as apathy, withdrawal
from family and friends, and inability to think clearly.
Regulators have issued concerns about prescribing anti-psychotics for older people. ere are currently
no US Food and Drug Administration (FDA) approved pharmacologic interventions for treatment
of dementia-related behaviour.
220
Health Canada has approved few pharmacologic interventions, and
issued warnings regarding some medication use, including, according to the BC Ministry of Health,
“advisories stating that people with dementia who use antipsychotics may die sooner than those who
don’t use these drugs.”
221
Health Canada has approved use of Risperidone only for “short-term symp-
tomatic management of aggression or psychotic symptoms in patients with severe dementia of the
Alzheimer type unresponsive to non-pharmacological approaches and when there is a risk of harm to
self or others,” specically excluding the use in people with other forms of dementia, while emphasiz-
ing the increased risk of death.
222
Studies which resulted in these advisories found that the rate of death in drug-treated patients
was about 4.5%, compared to a rate of about 2.6% in the placebo group. In other words, the risk of
death in drug-treated patients was 1.6 times more likely to result in death than those who were not
given drugs.
223
Anti-anxiety Medicines
Anti-anxiety medicines, including minor tranquilizers, may relieve anxiety and mild agitation;
however, they can also trigger further agitation in some older people.
224
Benzodiazepines may increase
confusion, and upset a person’s balance, raising the risk of falls.
225
Research has linked greater benzo-
diazepine use with quicker cognitive and functional decline for people with Alzheimer’s disease, and
in older people in general.
226
To avoid these problems, these drugs usually are stopped gradually after
a few weeks of use.
227
Anti-convulsant Medication
Anti-convulsants, such as Valproate and carbamazepine, have been used in a variety of settings to
control agitation, violent behaviour, and mood swings, including behaviours related to dementia,
when other pharmaceutical approaches are ineective. Research thus far indicates many potential side
eects, such as sedation, low sodium levels, blood disorders, and rashes.
228
As noted by Neugroschl
and Wang, “[g]abapentin and lamotrigine are used clinically, and are better tolerated by patients.”
229
ere is some evidence that the use of Carbamazapine may be eective, but the dosing, tolerability
and medication interactions associated with this medication limit its clinical usefulness.
230
However,
lamotrigine can cause a severe life threatening rash.
231
Anti-depressants
Diagnosing depression in people living with dementia can be a challenge because dementia and
depression can produce similar symptoms, such as apathy, social withdrawal, and loss of interest
in activities.
232
Serotonin reuptake inhibitors (SSRIs: uoxetine, sertraline, paroxetine, citalopram,
uvoxamine) are largely considered to be among the most ecient anti-depressants to treat depression
2 | Introduction to Dementia 67
in Alzheimer’s disease.
233
However, there have been mixed results from research as to the eectiveness
of some anti-depressants to treat depression in Alzheimer’s disease and other dementias.
234
A recent
research study concluded that there is limited evidence that anti-depressants are eective in treating
depression for people living with dementia, or improving cognitive function.
235
Pain Medications
People living with dementia experience pain—as anyone may. Untreated pain contributes to further
complications in treatment and care, and is a major contributor to reduced quality of life and disabil-
ity.
236
Adequate pain management is not only important to overall well-being for people living with
dementia; it can also lead to improvements in both behaviour, and the ability to perform activities of
daily life.
237
In addition to the discomfort and distress caused by pain, the pain may be the underlying
cause of behaviour which caregivers are nding challenging to manage, which can lead to inappropri-
ate treatment with psychotropic medication.
238
However, as pain is a symptom, and a matter of subjective evaluation, it can be challenging to recog-
nize, diagnose, and treat the pain experienced by people living with dementia, at least partly because
people living with dementia may have diculty communicating the source of pain, or articulating
their experience of it.
239
In addition, as noted in Pain and Disability: Clinical, Behavioral, and Public
Policy Perspectives:
How an individual reacts to physical symptoms—be they pain or any other symptom—
depends on his or her past experience with illness, personality and coping styles, familial
and cultural norms, as well as interpersonal interactions. How symptoms are perceived and
the meaning attributed to them may, in turn, powerfully inuence their subsequent inten-
sity and duration, the nature and extent of help-seeking behavior, and whether the person
comes to view him-or herself as sick, impaired, and deserving of disability benets.
240
Research indicates that the pain experienced by older people is often inaccurately assessed in long-
term care, leading to greater incidence of disease that could otherwise have been treated.
241
Further,
clinical studies suggest that under-treatment of pain in older people with cognitive impairments is
common, and poorly managed.
242
Adequate pain control depends on good evaluation, and careful consideration of a person’s drug treat-
ment plan. Despite the challenges noted above, tools do exist to support health care professionals and
sta in observing pain in a relatively objective manner.
243
As people living with dementia may not be
able to provide an accurate history of pain symptoms, it is important to consistently review whether
pain may be a contributing factor to a change in behaviour.
Like other drugs mentioned in this chapter, Tylenol and opioid pain medications can have side eects
which can contribute to sedation, confusion, and mild cognitive impairment.
244
However, if prescribed
carefully, a useful dose can sometimes be found that optimizes pain control and minimizes side eects.
I think doctors, if we feel that
we’re doing the right thing,
and the patient seems to be
kind-of going along with it, or
we haven’t heard otherwise
from the family, we sort of
carry on with our work.”
– Physician
68 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
2.2.3 Polypharmacy and Adverse Drug Reactions
Polypharmacy and inappropriate prescribing are risk factors for adverse drug reac-
tions, which commonly cause severely negative outcomes in older people.
245
While
polypharmacy is not homogeneously dened, generally it refers to the use of more
than four
246
or ve medications
247
simultaneously. Polypharmacy is common among
older people: one population-based study found that 34% of older people were
taking six to nine drugs.
248
Polypharmacy in older people has been demonstrated
to be positively associated with an increased risk of having a diagnosis of dementia,
with the rates of dementia diagnosis increasing steadily with the number of medi-
cations used.
249
Adverse drug reactions in older people represent a serious and growing public health
problem.
250
Older people are at an increased risk of adverse drug reactions because of
age-related pharmacodynamic and pharmacokinetic changes.
251
Pharmacodynamics
is “the eect of a drug on its target site”
252
while pharmacokinetics refers to “drug
absorption, distribution, metabolism, and excretion.”
253
Additionally, as older people
are often prescribed multiple medications, they are at increased risk for drug to drug
interactions. For example, previous studies have shown that the use of psychotropic
medications and opioid analgesics together increase the risk for hip fracture nearly
three-fold compared to non-users of either medication.
254
Researchers have identied
other medication combinations that present particular risks for older people.
255
A person in a care facility needs [to provide] consent half a dozen times a day—
wheelchair strap, bedrails, pureed diet, locked unit etc… Consent [needs to] to be lawful;
but it’s not reasonable.
– Health authority sta
3 | The Legal Framework of Health Care Consent in BC 69
CHAPTER 3
The Legal Framework Governing
Health Care Consent in BC
is chapter is the rst of three chapters outlining aspects of law and regulation relevant to health care
consent in BC. In this chapter we describe:
• e meaning of health care in BC law;
• e concept of informed consent—both the principles developed through court
decisions, and the legal framework set out in BC’s Health Care (Consent) and Care Facility
(Admission) Act (HCCA);
• Who has a legal obligation to obtain informed consent;
• e concept of mental capacity, and how it is determined;
• Statutory exceptions to the legal requirement to obtain informed consent to health
care treatment;
• e concepts of substitute and supported decision making;
• Types of substitute decision makers for health care in BC;
• e relationship between mental health law and health care consent law in BC;
70 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
• Review options available to people living with dementia, their family members, and
substitute or supportive decision makers who have concerns about health care treatment
decisions, choice of substitute decision maker, and determinations regarding capacity for
health care decision making;
• Access to justice issues facing people living with dementia who wish to challenge decisions
relevant to health care.
Chapter 3 is the most lengthy of our three chapters on the law. We discuss the law in relation to use of
chemical restraints in long-term care separately in Chapter 4. Chapter 5 examines the regulation of
health care professionals, sta, and institutions involved in informed consent.
3.1 WHAT IS HEALTH CARE?
Health care is an enormously broad concept, including a wide range of medication, treatment, and
services delivered in diverse locations. Health care occurs in community, within people’s homes, and
in the oces of physicians, psychiatrists, and other health care professionals. It happens in community
health centres, mental health units, and pharmacies, and in facilities, ranging from acute care units in
hospital to adult day programs a person attends daily, weekly, or monthly, to long-term care or assisted
living facilities. In many of these environments the boundary between home and facility becomes
blurred, because sites of care are temporary or ongoing communal living spaces where sta provide
support or care—such as respite care, adult day programs, group homes for people with disabilities,
assisted living residences, and long-term care facilities.
In the Royal Commission report on health care in Canada, Roy Romanow described the range of
health care we experience across our lives as follows:
At one end of the spectrum are a wide variety of services that are covered by the public
health care system: public health programs aimed at the prevention of illness such as the
immunization of children; visits to family physicians, pediatricians or gynecologists; diag-
nostic tests; and day surgery. Moving across the spectrum, we nd the complex and intense
care that requires the increasing use of advanced technology as well as highly trained
specialists and large support teams. In addition, long-term or continuing care is typically
provided in nursing homes or other specialized residential settings for people who require
ongoing medical attention and support but who do not need to be treated in hospitals.
Palliative care is provided to people who are dying and is available in hospitals, hospices
and, to a growing extent at home. Home care is an increasingly important component of
health care that can allow people to avoid hospitalization or recover at home following a
shorter hospital stay.
256
e type of health care we receive will vary depending on a number of factors, including:
• the state of our health;
• our nancial ability to pay for non-publicly-funded care;
3 | The Legal Framework of Health Care Consent in BC 71
• the availability of services in our community; and
• the values and beliefs that underlie our choices about care.
As will be discussed throughout this report, what kind of care we are oered or receive will also depend
on our ability to exercise choice eectively within the various environments and relationships within
which health care is delivered.
In BC, the HCCA denes health care broadly to include “anything that is done for a therapeutic,
preventive, palliative, diagnostic, cosmetic or other purpose related to health,”
257
including:
(a) a series or sequence of similar treatments or care administered to an adult over a period of time
for a particular health problem,
(b) a plan for minor health care that
(i) is developed by one or more health care providers,
(ii) deals with one or more of the health problems that an adult has and may, in addition,
deal with one or more of the health problems that an adult is likely to have in the future
given the adult’s current health condition, and
(iii) expires no later than 12 months from the date consent for the plan was given, and
(c) participation in a medical research program approved by an ethics committee designated by
regulation”.
258
Health care thus includes not only single treatments and procedures, and a course of treatments over
a period of time, but also treatment plans that capture both current health issues, and those likely to
arise in the future, as well as participation in a research initiative. In other words, health care includes
discrete and continuing activities. As will be discussed later in this report, the inclusion of treatment
plans within the legislation can result in some uncertainty about when and how often health care
professionals and sta working in long-term care must obtain informed consent to provide treatment.
3.1.1 Major versus Minor Health Care
BC law creates a distinction between minor health care and major health care. Major health care
includes major surgery, any treatment involving a general anesthetic, and major diagnostic or investi-
gative procedures,
259
specically including radiation therapy, intravenous chemotherapy, kidney dial-
ysis, electroconvulsive therapy, and laser surgery.
260
Everything else is minor health care, including
routine tests and routine dental treatment.
261
e distinction matters because in some instances the
legal requirements regarding consent may hinge on whether the care is categorized as major or minor.
For example, in long-term care a number of forms of minor health care can be consented to in advance
through the care plan. Further, some forms of major health care cannot be consented to by a substitute
decision maker (see Section 3.7 below). However, informed consent to treatment by the appropriate
decision maker is required whether the care is classied as minor or major care.
72 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
3.1.2 Health versus Personal Care
At law, not every intervention provided by health care sta to support a person’s well-being meets the
denition of health care. In both institutional care settings, and the home environment, health care
sta and contractors deliver some services that are categorized as personal care as opposed to health
care. Personal care includes assistance with activities of daily living, such as bathing, dressing, and
toileting. e consent provisions of the HCCA do not apply when performing personal care services;
although it should be noted that the common law doctrine of informed consent, discussed below,
applies to the provision of personal care services.
262
It is not always clear which tasks are health care, and which are not.
263
e recent BC Supreme Court
decision of Bentley v. Maplewood Seniors Society claried that feeding with a spoon or glass was a
personal care service, and not a form of health care, even when administered by health care sta,
within a long-term care environment.
264
e Court found the legislation did not support the fami-
ly’s right to refuse personal care services on the person’s behalf because the provisions of the HCCA
did not apply.
265
3.1.3 Withdrawal of Care may be Health Care
e Supreme Court of Canada decision of Cuthbertson v. Rasouli discussed the meaning of the term
health care. Although the case was decided pursuant to Ontario legislation, which uses the wording
“treatment”, as opposed to “health care,” the denition in each province’s statute has similarities.
e case concerned whether the withdrawal of life support fell within the denition of “treatment”
contained in Ontario’s Health Care Consent Act.
266
e Court considered the meaning of “health related
purpose”, a phrase common to both BC and Ontario legislation—the BC version is “purpose related
to health care”—and found that the legislation did not limit the concept of a health-related purpose
to what is considered medically benecial to the patient, but rather dened the concept more broadly.
e court considered the meaning of the terms “therapeutic” and “preventative,” noting the following
New Oxford Dictionary of English(1998) denition of “preventive”:
[42]e same dictionary denes “preventive” as describing a medicine or other treatment
“designed to stop disease or ill health from occurring” or “designed to keep something
undesirable such as illness, harm, or accidents from occurring” (p. 1469)…”
267
Ultimately, the Court found that “treatment” includes the withdrawal of treatment.
It is uncertain whether withdrawal of life support is health care in BC. In Bentley, the BC Supreme
Court decision accepted that the meaning of health care was broad in BC, but not broad enough to
include oral nutrition and hydration, and cautioned against importing denitions from other provinces
and territories. e judge stated:
It is clear that jurisdictions in Canada have taken dierent, in fact sometimes contra-
dictory, approaches to the denition of health care. ere is no evidence in this case that
Oftentimes health care
professionals really aren’t
educated in what kind of
choices people have… I
took one lady to a doctor’s
appointment, and she was a
First Nations elder, and I took
her to a doctor’s appointment
and the doctor looked at me
and said, why isn’t she in a
home? And I said, because
she doesn’t want to.
– Social worker
3 | The Legal Framework of Health Care Consent in BC 73
in passing theHCCCFA Actin 1993 the British Columbia legislature
considered other jurisdiction’s denitions of health care.
268
However, the Supreme Court of Canada’s discussion of the meaning of “health-re-
lated purpose”, “therapeutic” and “preventative” in Rasouli may still provide some
guidance on the meaning of health care in the BC, beyond the issue of oral nutrition
and hydration.
3.1.4 Health Care Decisions versus Care Facility Admission
Decisions
BC law draws a distinction between health care decisions and care facility admission
decisions. Both were covered in the original drafting of the HCCA; however, at the
time of writing, the care facility admission provisions
269
are not yet in force. Fourteen
years after its initial introduction to Parliament in 1993, and after several amend-
ments, repeals and further amendments, the BC Government announced on March
9, 2017 that it would bringing into force Part 3 of the HCCA, as recommended
by BC’s Ombudsperson.
270
e announcement came as part of the government’s
announcement that BC would be investing $500 million dollars over the next four
years as part of a Ministry of Health action plan to improve care for seniors across the
system.
271
e newly elected government has announced subsequent delays; however,
at the time of writing, the plan appears to be that care facility regulations will soon be
published, and the legislation and regulations brought into force in 2019.
Currently, the process of care facility admission is largely unregulated, with neither
the Community Care and Assisted Living Act (CCAL Act) nor the Hospital Act contain-
ing any specic regulation of the admission process, including regarding consent. In
terms of planning in advance for decision making regarding care facility admission,
a standard section 7 representation agreement cannot cover admission to a long-
term care facility.
272
Authority for care facility admission requires an agreement made
under section 9, and is thus subject to the higher capacity standard discussed below.
Once brought into force, care facility admission provisions will apply to admission to
a “care facility,” dened as:
• Community care facilities licensed under the CCAL Act;
• Residences providing care to more than two persons, in the form of three
or more prescribed services within the meaning of the Act but which are
not licensed under the CCAL Act;
• Private hospitals under Part 2 of the Hospital Act; and
• Extended care hospitals providing long-term care under the
Hospital Act.
273
74 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
There are situations where people are suering horric pain. You know, signicant pain. And
their legal substitute decision makers refuse the appropriate clinical interventions to help
them. And not only is the adult in pain, the incapable adult, but, you know, others are hearing
an adult in pain, and health care professionals are watching a person be in pain… we’ve had
people with really awful hallucinations. Scary, horrifying, you know? And then people are
refusing treatment.
– Health authority sta
It is the manager of a care facility (not a health care provider) who will have the duty to ensure consent
is obtained prior to admission, whether from the adult or the substitute decision maker (with the
exception of admission without consent in emergency circumstances).
274
e absence of care facility admission provisions has created challenges with respect to facility admis-
sion for people living with dementia who do not have capacity to provide consent. If there is neither a
representative nor a personal guardian with authority to consent to care facility decisions, the absence
of legislation in this area can result in circumstances in which no one has authority to consent to
admission.
275
3.2 INFORMED CONSENT TO HEALTH CARE
3.2.1 The Common Law Doctrine of Informed Consent
Health care consent law has its roots in the common law. e modern common law doctrine of
informed consent has arisen relatively recently, commencing with the foundational 1980’s Supreme
Court of Canada decisions of Hopp v. Lepp
276
and Reibl v. Hughes.
277
ese cases have been described
as having “had a monumental eect on consent litigation in Canada.”
278
ey have been characterized
as resulting in a more patient-centred approach to the standards of disclosure, which accord greater
respect for individual autonomy and judgment, in contrast with the more paternalistic approach to
physician knowledge which previously dominated.
279
A doctor’s duty to disclose information regarding a patient’s treatment can be traced back to at least
the second half of the 20
th
century, and is rooted in common law principles of benecence, autonomy,
and the right to bodily integrity. As put by Robins JA in Fleming v. Reid:
e right to determine what shall, or shall not, be done with one’s own body, and to be
free from non-consensual medical treatment, is a right deeply rooted in our common
law. is right underlies thedoctrine of informed consent.With very limited exceptions,
every person’s body is considered inviolate, and, accordingly, every competent adult has
the right to be free from unwanted medical treatment. e fact that serious risks or conse-
quences may result from a refusal of medical treatment does not vitiate the right of medical
self-determination.
280
3 | The Legal Framework of Health Care Consent in BC 75
e Supreme Court again conrmed the modern doctrine of informed consent in AC v. Manitoba,
citing an excerpt from the leading case of Malette v. Shulman:
281
A competent adult is generally entitled to reject a specic treatment or all treatment, or
to select an alternate form of treatment, even if the decision may entail risks as serious as
death and may appear mistaken in the eyes of the medical profession or of the community.
Regardless of the doctor’s opinion, it is the patient who has the nal say on whether to
undergo the treatment ... edoctrine of informed consentis plainly intended to ensure
the freedom of individuals to make choices concerning their medical care.
282
e doctrine requires health professionals to obtain a patient’s consent prior to the administration of
medical treatment,
283
and to abide by a patient’s wishes to refuse treatment regardless of the conse-
quences to the health of the patient. In other words, a competent patient cannot be forced to accept
medical treatment in their “best interests” in the face of their refusal. e patient’s consent must be
voluntary, and informed by knowledge of the nature of the procedure, its risks, benets, and alternative
treatments.
284
e Courts have conrmed that the right to bodily integrity also includes the right to withdraw
consent to treatment already commenced.
285
Material Risk and the Duty of Disclosure
Former Chief Justice Laskin rst articulated the scope of the duty of disclosure in Hopp v. Lepp,
holding that a patient’s consent must be informed by information disclosed by the doctor prior to
treatment.
286
In particular, the doctor has a duty to answer questions and provide information as to the
nature of the treatment, its gravity, and material and special risks:
[I]n obtaining the consent of a patient for the performance upon him of a surgical opera-
tion, a surgeon, generally, should answer any specic questions posed by the patient as to
the risks involved and should, without being questioned, disclose to him the nature of the
proposed operation, its gravity, any material risks and any special or unusual risks attendant
upon the performance of the operation.
287
Laskin CJ elaborated on the question of what constitutes a “material risk” in Reibl v. Hughes:
[E]ven if a certain risk is a mere possibility which ordinarily need not be disclosed, yet if its
occurrence carries serious consequences, as for example, paralysis or even death, it should
be regarded as a material risk requiring disclosure.
Material risks have been interpreted as “signicant risks that pose a real threat to the patient’s life,
health or comfort.”
288
Statistical probability of a risk occurring is relevant, but not necessarily the sole
factor to be used to determine the materiality of a risk.
289
A risk which is statistically extremely unlikely
to eventuate may still be considered material if the risk has serious consequences, such a stroke, paral-
ysis or death.
290
Special risks which may not be relevant to most patients may be important to the
76 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
particular patient, and as such should be disclosed as a material risk. However, while the doctor has the
burden of determining whether a patient has unique circumstances warranting disclosure of special
risks, the patient has an obligation to communicate that “the patient’s position, interests, or values are
unusual in some potentially signicant way” with the doctor.
291
e duty of disclosure requires not only that risks be disclosed, but also that general information as to
the nature of the procedure, and any alternatives to the treatment be provided.
292
Time to digest the
information is required, as is a suitable environment for assessing the information.
293
A valid withdrawal of consent also requires that the patient understand the nature and consequences
of the withdrawal.
294
In the circumstances of a withdrawal of consent after treatment has commenced,
the doctor may be required to disclose further information before consent to proceed once again could
be considered informed. In such a case, “[t]he appropriate approach is, once again, to focus on what
the patient would like to know concerning the continuation of the process once the consent has been
withdrawn.”
295
The Reasonable Person Standard in Health Care Law
Modern health care consent law rejected the earlier professional standard of disclosure, which purely
referenced medical standards to determine what should be disclosed to the patient. e “reasonable
patient” standard of disclosure requires a doctor to pre-disclose what a reasonable person in the plain-
ti ’s position would consider relevant to their health care decision making.
296
e “reasonable patient”
standard comprises a mixture of objective and subjective factors, including consideration of medical
knowledge of material risks of a procedure, and what the patient themselves would consider rele-
vant.
297
More recent cases have armed and elaborated on the principles enunciated in these seminal
cases, clarifying the standard for disclosure. In 1993, the Supreme Court Canada stated in Ciarlariello
v. Schacter:
Reibl v. Hughes,supra, indicates that the disclosure which must be made to a patient will
often be more than that which the medical profession might consider appropriate to
divulge.Although expert medical evidence on this issue is still relevant, it is no longer
decisive in determining whether or not sucient information was given to a patient to
enable that patient to make an informed consent.e test now focuses on what the patient
would want to know.
298
Importantly, there is no corresponding obligation of a capable adult to make a health care decision
others might considerable reasonable. A capable adult can make any decision they choose regarding
their own health care. e reasonable person standard applies exclusively to the physician’s duty of
disclosure.
The Adult’s Understanding of Medical Information
e Supreme Court in Ciarlariello has also armed that the duty to disclose includes a duty on the
doctor to ensure that the patient understands the information provided:
3 | The Legal Framework of Health Care Consent in BC 77
Prior toReibl v. Hughes, there was some doubt as to whether the doctor had the duty to
ensure that he was understood.However, Laskin C.J. made it quite clear in that case that
it was incumbent on the doctor to make sure that he was understood, particularly where
it appears that the patient had some diculty with the language spoken by the doctor…
Indeed, it is appropriate that the burden should be placed on the doctor to show that the
patient comprehended the explanation and instructions given.
299
In Ciarlariello, the doctor was aware of the patient’s diculties with the English language, and of the
stress she was under, and took care to ensure the woman understood the nature of the procedure. e
trial judge found that she demonstrated her understanding by her ability to converse with, and respond
appropriately to, questions and instructions given to her by the doctors. As such, the Court concluded
that despite the fact that a translator was not present during the angiogram, the patient had given valid
consent to continue with the procedure.
300
Robertson provides examples of other circumstances in which a person’s understanding of a doctor’s
disclosure was in issue, including after a long labour, or when a doctor used overly technical termi-
nology.
301
e doctor’s burden to ensure comprehension is not exhaustive: “the burden is placed on
the doctor to show that she took reasonable (not exhaustive) steps to ascertain whether the patient
understood the message being conveyed.”
302
In the subsequent Ontario Court of Justice case of Lue v. St. Michael’s Hospital, the court stated that
with respect to establishing whether consent by the patient is “informed”, “[t]he focus has been on
what the physician imparts, not on how the patient receives it, absorbs it and acts on it. e eect on
the recipient of the information and the ability to comprehend the options presented are equally as
important as the message the physician communicates.”
303
e Court went on to set out a list of objec-
tive criteria by which the degree of patient understanding can be determined, beyond a physician’s
assertion. ese include whether:
• e patient asked pertinent questions;
• Sucient time was spent providing the information;
• Visual aids were used, if relevant;
• Information was put in writing; and
• e patient utilized family assistance in understanding the information.
304
Exceptions to the Common Law Duty
ere are several common law exceptions to the duty of a physician to disclose information to a patient
prior to treatment. ey are:
• erapeutic privilege;
• Waiver of the right to information; and
• Emergency circumstances.
305
78 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
erapeutic privilege is where a doctor may be justied in withholding information
on the basis of the fragile emotional state of the patient, thereby avoiding causing
the patient too much anxiety.
306
Despite recognizing that consent had to be based on
sucient information, the therapeutic exception privilege was still very prominent
in the earliest informed consent cases which appeared in US case law in the 50’s. e
concept that such information sharing could be restricted to avoid harm to the patient
was still rmly in play. e exception was considered in Canada, in a decision of the
Alberta Court of Queen’s Bench, where it was interpreted very narrowly,
307
and it was
argued by some that the exception should only be applied in rare circumstances.
308
A second exception to the duty of disclosure is where a patient waives the right to
information, agreeing to trust the doctor’s judgment instead. A third exception is
where a competent adult requires emergency health care but is unable to consent
because, for instance, they are unconscious.
309
3.2.2 Informed Consent under the BC’s Health Care Consent Law
Consent Rights
While all jurisdictions have some form of substitute decision making legislation, only
Ontario, BC, Prince Edward Island, Quebec, and the Yukon have a general statu-
tory requirement to obtain informed consent prior to providing medical treatment.
310
Health care consent legislation in these jurisdictions claries and enhances health
care consent rights.
In BC the HCCA conrms that every adult who has mental capacity to make the
decision has the right to accept, refuse, or discontinue any form of health care, regard-
less of the potential impact of that decision on their health. In most instances—
we discuss the exceptions below—consent from the appropriate individual is a
prerequisite for providing health care. e HCCA describes the right to health care
consent as follows:
Every adult who is capable of giving or refusing consent to health care has
(a) the right to give consent or to refuse consent on any grounds,
including moral or religious grounds, even if the refusal will
result in death,
(b) the right to select a particular form of available health care on any
grounds, including moral or religious grounds,
(c) the right to revoke consent,
(d) the right to expect that a decision to give, refuse or revoke consent
will be respected, and
(e) the right to be involved to the greatest degree possible in all case
planning and decision making.
311
Everyone knows in medicine
that every drug has a side
eect, including Gravol. So
you don’t give a pill without
recognizing the side eects
and, again, you don’t give
a pill without consent.
– Physician
3 | The Legal Framework of Health Care Consent in BC 79
e language of the statute conrms that notions of best interests have no place in managing people’s
choices about their own health care; rather, for capable adults, autonomy of decision making is para-
mount. Adults who have capacity to make health care decisions are permitted to make choices that
may result to harm to themselves, and even end their lives.
312
As set out in the above discussion of common law, a fundamental aspect of the right to consent is that
it includes not only the right to make the choice, but also the right to sucient information in order
to make an informed decision. e HCCA states that a health care provider is required to “give the
adult the information a reasonable person would require to understand the proposed health care and
to make a decision,” including information about:
(i) the condition for which the health care is proposed,
(ii) the nature of the proposed health care,
(iii) the risks and benets of the proposed health care that a reasonable person would expect to be
told about, and
(iv) alternative courses of health care.
313
e law also requires that “the adult has an opportunity to ask questions and receive answers about
the proposed health care.”
314
e requirement to provide this degree of contextual information in
order support decision making underscores that consent must be specic to a procedure or course of
treatment. For a person receiving ongoing care, consent can be a multi-stage process, where the adult
provides consent for various aspects of care throughout the health care relationship. Consent must also
be provided voluntarily, without fraud or misrepresentation.
315
Importantly, the language of the statute implies discussion and dialogue with the adult considering
health care. e law states that during the process of obtaining consent the health care provider must
communicate with the adult in a manner appropriate to the adult’s skills and abilities, and allow family
or close friends to assist the adult to communicate.
316
Diculty in communication should thus not be
a barrier to decision making. Consent can be given orally, in writing, or may be inferred from conduct,
such as oering an arm for an injection or opening a mouth to receive medication. It can also be given,
with some restrictions, by way of an advance directive (discussed further below).
317
e inclusion of the above language in the statute is very important from a disability and human rights
perspective. It tempers the reference to “a reasonable person” with consideration of the unique abilities
of the person who is providing consent, imposing on health care providers seeking consent the obliga-
tion to communicate with people exercising consent rights in a manner that accommodates disability
related needs, and abilities connected to communication. Such obligations have particular relevance
for people living with dementia, who may have diculty with memory and language.
e elements of consent in all jurisdictions are essentially the same, with the exception of Quebec’s
Civil Code, which does not contain statutory elements of consent. All consent to treatment statutes
require that the consent relate to the proposed treatment, be informed, voluntary, and not obtained
through misrepresentation or fraud. ere exist only minor dierences in the information that health
care providers must provide in each jurisdiction in order for consent to be informed.
318
80 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Exclusion for Psychiatric Treatment
Unique to BC, an adult who is involuntarily committed under the province’s mental health statute
does not have the right to consent to psychiatric treatment, regardless of whether or not the person has
capacity to consent to treatment, and even where the adult has been transferred to another facility, or
released into community on leave.
319
e HCCA contains an exclusion which eectively protects the
operation of the provisions of BC’s Mental Health Act (MHA), discussed below in Section 3.8, which
give the director of a designated facility the authority to make psychiatric treatment decisions for an
adult involuntarily committed under that law.
320
Consent to health care for a physical illness or injury,
however, is still governed by the HCCA, despite any involuntary admission.
The Care Plan
e obligation to get prior informed consent applies to the proposed health care. e HCCA denes
“health care” broadly to include:
(a) a series or sequence of similar treatments or care administered to an adult over a period of time
for a particular health problem,
(b) a plan for minor health care that
(i) is developed by one or more health care providers,
(ii) deals with one or more of the health problems that an adult has and may, in addition,
deal with one or more of the health problems that an adult is likely to have in the future
given the adult’s current health condition, and
(iii) expires no later than 12 months from the date consent for the plan was given, and
(c) participation in a medical research program approved by an ethics committee designated by
regulation.
321
erefore a person may consent to either a specic medication, or a “plan for minor health care” that
addresses both existing health problems, and problems that are likely to occur in up to a twelve month
period. Surgery is an example of a form of treatment that cannot be addressed in advance via the care
plan—surgery is, by statutory denition, a form of major health care,
322
as are kidney dialysis, radiation
therapy, and intravenous chemotherapy. e list of items that constitute major health care is very short,
and therefore, a great variety of treatments can be consented to in advance via the care plan. Where
a person has capacity to consent to a form of treatment themselves, they are always entitled to refuse
treatment when it is oered. However, if the person does not have capacity, and a substitute decision
maker participates in the development of the care plan, the care plan operates as a kind of advance
substitute consent regarding anticipated care needs.
e RC Regulation identies what must be included in a care plan.
323
In terms of items that might fall
within a denition of health care, a care plan must include:
(i) medication, including self-administered medication if approved under section 70
(4)[administration of medication],
(ii) behavioural intervention, if applicable, and
The best practice you know,
when there is a serious
illness, the physician would
actually come and do an
assessment rather than order
over the phone. I mean, I
receive complaints all the
time from the nurses saying
that the physician refused
to come to see the person.
– Nurse
3 | The Legal Framework of Health Care Consent in BC 81
(iii) if there is agreement to the use of restraints under section 74 (1) (b) [when
restraints may be used], the type or nature of restraint and the frequency of
reassessment.
324
e use of the phrase “to the extent reasonably practical” in the RC Regulation appears
inconsistent with the requirement for consent to the provision of the health care
which forms part of the care plan. e regulation states:
83(2) A care plan must be developed, to the extent reasonably practical,
(a) with the participation of
(i) the person in care, or
(ii) if the person in care is not capable of participating, the person
in care’s parent or representative, and
(b) in a manner that takes into account the unique abilities, physical,
social and emotional needs, and cultural and spiritual preferences of the
person in care.
3.3 WHO IS REQUIRED TO GET CONSENT?
In BC, it is the legal obligation of the health care provider to obtain informed consent.
A health care provider is someone who is licensed, certied, or registered to provide
health care under the Health Professions Act, or the Social Workers Act.
325
ere are currently 25 self-regulated professions under the Health Professions Act.
326
ey include:
• Physicians and surgeons
327
• Nurses, including registered nurses, registered psychiatric nurses, and
licensed practical nurses
• Occupational and physical therapists
• Audiologists
• Chiropractors
• Dentists, denturists, and dental hygienists
• Dietitians
• Massage therapists
• Opticians
• Pharmacists
• Podiatrists
• Psychologists
• Speech language pathologists
82 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
As such, the obligation to obtain consent cannot fall to a health care assistant, or even the director of
a care facility (unless the person is also a health care provider). Unlike nurses, physicians and allied
health professionals, care aides and health assistants—referred to in this report in the care facility
context as health care assistants (HCAs)—are not registered professionals, nor are they licensed.
328
ey are not included in the denition of “health care provider” contained in the HCCA, and so do
not have a statutory duty to get consent for the care they provide.
329
Facility administrators also do not
have any statutory obligation under the CCAL Act to ensure consent was provided within the agency
for which they oversee care. However, HCAs provide the bulk of the day-to day-care of residents,
under the supervision and direction of registered and licensed practical nurses. We discuss their work
in greater detail in chapter 5.
3.4 MENTAL CAPACITY
3.4.1 What is Mental Capacity?
At law, the terms mental capability and mental capacity are used interchangeably, with the term capac-
ity guring in some statutes or jurisdictions, and the term capability in others. In some instances, the
term competence is also used, although not in BC legislation. For the purpose of this report we use
the term capacity.
Denitions of capacity vary across jurisdiction and have evolved over the years. e key to most
recently revised denitions is the notion that a capable adult must be able to understand information,
evaluate relevant data, and appreciate the consequences of the decision. Elsewhere we have character-
ized this approach to the denition as a functional approach.
330
In this sense capacity is about a person’s
decision making process, and it is neutral as to the outcome of that process.
331
Also, whether a person
has capacity is not determined by the presence of disability or disease, but rather by their particular
cognitive processes, and their experience of living with that disability or disease.
e HCCA takes a functional approach to capacity. e Act states:
How incapability is determined
7 When deciding whether an adult is incapable of giving, refusing or revoking consent to health
care, a health care provider must base the decision on whether or not the adult demonstrates that he
or she understands
(a) the information given by the health care provider under section 6 (e), and
(b) that the information applies to the situation of the adult for whom the health care
is proposed.
e HCCA reects a decision-specic approach to capacity by linking the capacity test to the decision
at issue.
332
is decision-specic approach reects the idea that a person could be capable of some
health care decisions, but not others. Considering more specically the community we consider in this
report, some people living with dementia may be able to consent to health care, some not. Some may
be able to consent to some forms of health care, but not others. For people with dementia, decision
making capacity can change from day to day, and even hour to hour. A person could be capable of
3 | The Legal Framework of Health Care Consent in BC 83
making their health care decisions regardless of whether they are capable of making other decisions
that are personal, nancial, or legal in nature.
As we have noted in another report, Canadian law generally recognizes that there is no single or global
test of capability; “instead, the law has developed many dierent tests of capacity, each geared to a
specic type of transaction or relationship.”
333
Some of these tests have emerged out of the common
law; some have been codied in statutes. In the context of health care consent, the concept was devel-
oped in court decisions, and later codied in the HCCA. As noted earlier, this makes BC fairly unique
among Canadian jurisdictions: only Ontario, BC, Prince Edward Island, Quebec, and the Yukon have
a general statutory requirement to obtain informed consent prior to providing medical treatment.
334
3.4.2 Determining and Conrming Capacity
e language of the HCCA requires a health care provider to conrm capacity on multiple occasions.
e Act requires the health care provider not to seek substitute consent “unless he or she has made
every reasonable eort to obtain a decision from the adult.”
335
Where a health care provider has selected a temporary substitute decision maker due to a determi-
nation that the adult does not have capacity, the Act requires the health care provider to conrm in
writing that the adult is still incapable no more than 21 days before the health care treatment is to
begin.
336
e section adds that “whether or not the health care that is the subject of the decision made
under subsection (1) has begun, if at any time a health care provider has reasonable grounds to believe
that the adult may be capable of giving or refusing consent to health care, the health care provider
must again determine whether the adult remains incapable.”
337
If the adult has capacity, the author-
ity of the substitute decision maker is terminated, and the health care provider must obtain consent
from the adult.
338
3.5 EXCEPTIONS TO THE REQUIREMENT TO OBTAIN CONSENT
ere are three limited exceptions under the HCCA to the requirement to obtain the prior consent of
the adult to health care treatment: incapacity;
339
emergency;
340
and preliminary examination.
341
3.5.1 Incapacity
Where an adult has been determined by the health care provider to be incapable of making a decision,
the health care provider can still provide the recommended treatment if the adult’s substitute decision
maker has authority and capacity to consent, and does so.
342
e substitute decision maker consenting
on the adult’s behalf may be the adult’s personal guardian or representative,
343
or where no personal
guardian or representative exists, a temporary substitute decision maker appointed under this legisla-
tion (temporary substitutes are discussed below)
344
e health care provider has the same obligations
to the substitute decision maker as to the adult receiving health care, whether it be a personal guardian,
representative, or temporary substitute decision maker, in terms of ensuring consent is voluntary and
84 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
informed, namely, that the means of communication is appropriate, that the substitute decision maker
in fact has capacity, and regarding the manner in which consent may be expressed.
345
Who can act as a
substitute decision maker and the rules governing their conduct are discussed below.
3.5.2 Emergency
If an adult is found to be incapable of consenting to health care, a health care provider may provide
the health care immediately “in order to preserve the adult’s life, to prevent serious physical or mental
harm or to alleviate severe pain,”
346
so long as there is no capable substitute decision maker reason-
ably available given the circumstances to give or refuse consent.
347
In addition, where practicable, the
health care provider must obtain a second opinion supporting the need for emergency treatment, and
of the adult’s incapacity.
348
Further, there is a blanket provision preventing the health care provider
from providing emergency health care which is believed on reasonable grounds to be contrary to the
capable adult’s known expressed wishes.
349
is latter provision was included by way of amendment to
the HCCA in 2002 in order to align the legislation with what was already occurring in practice at the
time, and as claried by appeal court decisions and legislation in Ontario.
350
If a substitute decision
maker becomes available after treatment has commenced, their request to withdraw the treatment
must be respected.
351
3.5.3 Preliminary Examination
e HCCA permits health care providers to undertake triage or another kind of preliminary exam-
ination, treatment, or diagnosis of an adult, without rst obtaining the consent of the adult, if either
the adult indicates they are seeking health care, or failing this, the adult’s spouse, near-relative or close
friend does so.
352
As noted above, the issue of involuntary psychiatric treatment is not governed by the HCCA, but
instead by the MHA, and is discussed separately below. It should also be noted that there are also some
exceptions to the requirement to obtain consent contained in legislation other than the HCCA, such
as the Public Health Act in the context of the control of contagious diseases.
353
However, discussion of
these topic is outside the scope of this report.
ese three broad exceptions are fairly standard in Canadian health care consent statutes. Ontario
and PEI use the denition of “treatment” to exclude the requirement to obtain consent in the case of
assessment or examination,
354
whereas BC and the Yukon make an express exception to the consent
requirement in the case of preliminary examinations, to the same end. PEI and Ontario, but not other
jurisdictions, exclude from their denitions of “treatment” treatment that poses little or no risk of
harm to the person, thereby removing any requirement to obtain consent in such instances.
355
Quebec’s
Civil Code concerns consent to “care of any nature” which is stated to include “examination, specimen
taking, removal of tissue, treatment or any other act.”
356
Each of these provinces’ legislation contains an exception to the requirement to obtain consent in the
case of an emergency involving a situation where:
The legal representative is
someone you consult with
about values, about goals
of care, about advance
care planning, not about
day-to-day medication
decision making.
– Physician
3 | The Legal Framework of Health Care Consent in BC 85
• ere is a risk of imminent serious bodily harm, pain or suering if
treatment is not provided without delay;
• e person does not have capacity to consent; and
• A substitute decision maker is not available.
ere are minor variations in the wording of this exception. In Quebec, however, this
exception is tempered by the requirement that even in an emergency, consent must be
obtained “where the care is unusual or has become useless or where its consequences
could be intolerable for the person.”
357
All of these jurisdictions, except Quebec,
include an exception in the case of a substitute decision maker who has refused treat-
ment in an emergency where the health care provider believes the substitute decision
maker has not complied with their statutory obligations in refusing the treatment.
3.6 SUPPORTED DECISION MAKING
Some people who do not have the capacity to make health care decisions inde-
pendently may be able to make decisions with support. e concept of supported
decision making emerged from disability advocacy as an alternative to guardianship.
e Mental Disability Advocacy Centre characterizes the following principles as
being at the heart of supported decision making:
• e person retains their full legal capacity;
• e person himself/herself makes the decision. e role of supporters is
to assist this person to reaching his/her own decisions;
• ere is a relationship of trust between the person making the decision
and the supporters;
• Such a system must be borne of the free agreement of the adult and the
supporter(s);
• ere is usually a supporting group or network around the person making
the decision;
• e role of supporters is to assist the person making the decision to
communicate his/her intentions to others and help him/her understand
the choices at hand; and
• Supporters are usually unpaid and could include friends, family, and/or
members of the community.
358
e concept of supported decision making is grounded in the idea that “interdepen-
dence is a normal method of decision-making for everyone,”
359
and decision-mak-
ing is inherently social. Many people naturally make decisions in consultation with
people they trust; however, for some people with disabilities, supported decision
making eectively enhances capacity, allowing a person who might otherwise be
86 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
considered incapable to participate robustly in decision making. Supported decision making regimes
recognize the rights and responsibilities of the supportive decision makers.
In BC, supported decision making is legally recognized under the Representation Agreement Act (RAA),
which allows a person to enter into an agreement authorizing another person to help them with their
decision making.
360
e word “supported” is not found anywhere in the legislation. e word “help” is
used in section 7 of the Act. Section 7 states that “[i]n a representation agreement made under this
section, an adult may authorize his or her representative to help the adult make decisions, or to make
decisions on behalf of the adult.”
361
Representation agreements made under section 7 can cover:
• Personal care;
• “[R]outine management of the adult’s nancial aairs”;
362
• Most major and minor health care; and
• Some legal decisions and instructions to a lawyer.
363
e statute distinguishes between agreements created pursuant to sections 7 and 9 of the Act. e
Act sets out a more onerous standard of capacity for section 9 agreements (discussed below), which
can address personal and health care decisions that arguably permit greater invasion on the person’s
autonomy. Although the word “help” does not appear in section 9, the section permits an adult to
“authorize his or her representative to (a) do anything that the representative considers necessary in
relation to the personal care or health care of the adult.”
364
is broad reference to powers may include
supported decision making.
365
e representation agreement regime for supported decision making provides legal recognition and
legal structure to a social relationship that ideally supports capacity for decision making on a range of
subjects chosen by the adult creating the agreement, including, potentially, many health care decisions.
By virtue of the legal recognition, third parties, such as health care professionals, have an obligation
to recognize the role of the supportive decision makers, and share with them information relevant to
decision making.
BC is one of the rst jurisdictions in the world to have recognized supported decision making through
legislation. ere was a strong tradition of supported decision making that existed before the legisla-
tion came into eect in BC, which fueled advocacy for inclusion of supported decision making in the
RAA. Some types of supported decision making relationships are now recognized in the laws of Yukon,
Alberta, and Saskatchewan. Yukon and Alberta are the only other jurisdictions in Canada where adults
may enter into agreements regarding supported decision making.
366
In other jurisdictions, court inter-
vention is required to grant authority.
Although not set out in BC legislation, our research
367
indicates that supportive decision makers
“support” a person to:
• Understand the issues involved in a decision;
• Understand the consequences of a decision;
3 | The Legal Framework of Health Care Consent in BC 87
• Access the appropriate assistance or information to help them make a decision; and
• Express their views, and act as interpreter where needed.
A supportive decision maker can help others to:
• Truly hear or understand a person who requires support;
• Appreciate the person’s needs, rights, values, preferences and goals; and
• Respect the person’s autonomy, dignity and wisdom—in other words, help prevent
discrimination and bias linked to disability.
Yukon’s Decision-Making Support and Protection to Adults Act contains a description of the respon-
sibilities of an associate decision-maker, which is the name for a supportive decision maker in that
jurisdiction.
Responsibilities of an associate decision-maker
5(1) Except as a supported decision-making agreement otherwise provides, the responsibilities of
the associate decision-maker are
(a) to assist the adult to make and express a decision;
(b) to assist the adult to obtain relevant information;
(c) to advise the adult by explaining relevant information and considerations;
(d) to ascertain the wishes and decisions of the adult and assist the adult to
communicate them; and
(e) to endeavour to ensure that the adult’s decision is implemented.
368
Supported decision making may be a good option for some people living with dementia who have
diminished capacity for independent decision making. A representation agreement for supported
decision making allows health care providers to obtain consent from the person living with dementia
as opposed to one of the substitute decision makers discussed in Section 3.7 below.
e HCCA briey recognizes the role of supported decision making for health care. Section 8, which
addresses the “duty to communicate in an appropriate manner”, states that:
Duty to communicate in appropriate manner
8 When seeking an adult’s consent to health care or deciding whether an adult is incapable of
giving, refusing or revoking consent, a health care provider
(a) must communicate with the adult in a manner appropriate to the adult’s skills and
abilities, and
(b) may allow the adult’s spouse, or any near relatives or close friends, who accompany
the adult and oer their assistance, to help the adult to understand or to demonstrate an
understanding of the matters mentioned in section7.
369
88 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
3.7 SUBSTITUTE DECISION MAKING
3.7.1 Types of Substitute Decision Make
A fundamental aspect of health care consent law is the concept of a substitute decision maker. e
substitute decision maker is the person or agency authorized by court, statute or agreement to make
decisions on another person’s behalf. e concept of modern substitute decision making has been
described as preserving, rather than undermining, decision making autonomy because the substitute is
taxed with making decisions in a manner consistent with person’s values. Margaret Isabel Hall writes:
Substitute decision-making enables the autonomy of the person whose decision-mak-
ing processes are impaired by enabling her substitute to eect the decisions she would
have made if able to do so. e substitute is not a replacement; he or she operates as a
kind of decision-making amanuensis, eecting decisions that “really” belong to the other.
Proceeding on the basis that persons generally make decisions like those they have made
in the past, the substitute is able to maintain the identity of the individual by perpetuating
this kind of consistent decision-making.
370
e Law Commission of Ontario has thus characterized the modern substitute decision making as
embodying a “substituted judgment” rather than a “best interests” approach.
371
e common law doctrine of informed consent deals with the obligations of health care providers
with respect to consent to health care by capable adults. At common law, only a guardian appointed
by the court, or the court itself under its parens patriae authority, may make health care decisions for a
person who lacks capacity.
372
Even spouses are not permitted to make substitute decisions for health
care under the common law. In the absence of substitute decision making legislation, family members
would have to apply to the court to be made personal guardians, or to request an order authorizing
treatment, if a treatment decision did not fall within the emergency exception.
373
Consequently, legis-
lators in all Canadian jurisdictions have enacted substitute decision making statutes.
ere are many dierent kinds of substitute decision making relationships for health care in BC. Each
is created through dierent legal processes. A health care decision maker could be:
• A representative authorized under a representation agreement;
• A committee (also known as a personal guardian) granted decision making authority
by a judge pursuant to an application for committeeship under the Patients Property
Act (PPA); or
• A temporary substitute decision maker, chosen by the health care provider in accordance
with the HCCA.
Further, if a person is involuntarily committed under the MHA, consent for psychiatric treatment
authorized by the director is deemed to have been provided by the patient.
374
3 | The Legal Framework of Health Care Consent in BC 89
If an adult is not capable of consenting to treatment, a committee is rst in line to make a health care
treatment decision on the adult’s behalf.
375
If there is no committee or representative, the health care
provider is required to make reasonable eorts to get a health care decision from a temporary substi-
tute decision maker pursuant to section 16 of the HCCA. e decision maker of last resort, if there
is no other appropriate person as per the HCCA (that is to say, no family or close friends), is the BC
Public Guardian and Trustee (PGT), or a person chosen by the PGT. e PGT’s role is discussed
further below.
e section below provides more information on each of the three dierent types of substitute decision
maker for health care.
Representative
In BC a person may create a representation agreement, pursuant to the RAA, granting another person
the authority to make health care decisions for them, or, as is discussed in Part F above, to assist them
with decision making.
376
Representation agreements can cover health, personal, nancial and/or legal
decision making; the adult entering into the agreement and granting authority to another person may
choose the scope of authority. In the event that a person does not have capacity to make a health care
decision, the representative may make health care decisions within the scope of authority covered by
the agreement. e representative diers from all other substitute decision makers for health care by
virtue of being chosen by an adult who enters into a representation agreement. Appointing a repre-
sentative can be a form of advance care planning. A person can stipulate within the agreement the
circumstances which will trigger powers to take eect, such as when the person does not have the
capacity to make a treatment decision.
e RAA distinguishes between standard agreements made under section 7 of the Act, and non-stan-
dard agreements under section 9 of the Act. With respect to health care decisions, a standard agree-
ment enables the representative to make decisions on the adult’s behalf with respect to “major” and
“minor” health care (as dened in the HCCA).
377
While the agreement cannot authorize the represen-
tative to refuse life-saving treatment, it may cover a range of end of life health care decisions, such as
medications for comfort and pain.
378
Although the scope of powers always depends on what authority the adult chooses to include in a
representation agreement, a non-standard agreement may grant broader decision making authority. It
can enable the representative to do anything the representative considers necessary in relation to the
adult’s health care, including making decisions about whether the adult should live in a long-term care
facility, and to give or refuse consent to specied kinds of health care for the adult, even where the adult
refuses to give consent at the time the health care is provided.
379
Under a section 9 presentation agree-
ment, representatives may give or refuse consent to health care necessary to preserve life—if they have
been given the power to make such health care decisions.
380
Neither type of representation agreement
can provide the representative with the authority to make decisions set out in section 5 of the Health
Care Consent Regulation, which we describe further below (in Section 3.7.3).
381
90 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Capacity standard
e capacity standard for a representation agreement depends on whether the agreement is made
under section 7 or 9 of the Act. e statute is clear that an adult can enter into a standard 7 represen-
tation agreement even if the adult is incapable of other decisions. e Act states:
Test of incapability for standard provisions
8 (1) An adult may make a representation agreement consisting of one or more of the standard
provisions authorized by section7 even though the adult is incapable of
(a) making a contract,
(b) managing his or her health care, personal care or legal matters, or
(c) the routine management of his or her nancial aairs.
e statute provides the following list of factors that must be considered in determining whether a
person has capacity to make a section 7 representation agreement, or change or revoke any provisions
of such a representation agreement:
(a) whether the adult communicates a desire to have a representative make, help make, or stop
making decisions;
(b) whether the adult demonstrates choices and preferences and can express feelings of approval or
disapproval of others;
(c) whether the adult is aware that making the representation agreement or changing or revoking
any of the provisions means that the representative may make, or stop making, decisions or choices
that aect the adult;
(d) whether the adult has a relationship with the representative that is characterized by trust.
382
e thrust of the factors is to ensure the adult wants the agreement, and trusts the person whom they
have chosen.
For section 9 agreements, the capacity standard is arguably higher, requiring the adult to understand
the scope of authority and the provisions of the agreement:
Test of incapability for non-standard representation agreements
10 An adult may authorize a representative to do any or all of the things referred to in
section9 unless the adult is incapable of understanding the nature and consequences of the
proposed agreement.
e capacity standard for a section 9 representation agreement is akin to the general standard for
entering into a contract.
Committee or Personal Guardian
A “committee of the person”, referred to as a personal guardian in the HCCA, may be appointed by
court order pursuant to the PPA.
383
e committee may be granted “custody of the person,”
384
and as
such have the authority to make all health care decisions on the person’s behalf, except as might be
3 | The Legal Framework of Health Care Consent in BC 91
specically restricted by the court.
385
e committee must make decisions for the benet of the person
and the person’s family,
386
but is required to foster the person’s independence, and encourage their
involvement in any decision-making.
387
e HCCA provides that a health care provider can provide
health care to an adult who is unable to make her own decision if the personal guardian (or represen-
tative) consents.
388
Temporary Substitute Decision Maker
e HCCA sets out (in descending order of hierarchy) who may act as a temporary substitute deci-
sion maker (TSDM) in cases where the adult is found by the health care provider to be incapable of
consenting to the proposed health care, and there is no personal guardian, representative, or relevant
advance directive (advance directives are discussed in the following section). e Act requires the
health care provider to choose the rst available and qualied person from the following list, in a
descending manner:
(a) the adult’s spouse;
(b) the adult’s child;
(c) the adult’s parent;
(d) the adult’s brother or sister;
(d.1) the adult’s grandparent;
(d.2) the adult’s grandchild;
(e) anyone else related by birth or adoption to the adult;
(f) a close friend of the adult;
(g) a person immediately related to the adult by marriage.
389
Further, the TSDM must meet the following criteria:
(a) be at least 19 years of age,
(b) have been in contact with the adult during the preceding 12 months,
(c) have no dispute with the adult,
(d) be capable of giving, refusing or revoking substitute consent, and
(e) be willing to comply with the duties in section 19.
390
In the event that no one is available, or meets the criteria, or there is a dispute as to who should be
appointed, the health care provider must choose someone authorized by the PGT, and this individual
may be a person from the PGT.
391
Although the Act uses the term “temporary”, the reliance on a TSDM is often not temporary in
practice. As long as an adult does not have capacity, and has neither a representative nor a committee,
the same person may be chosen repeatedly to make health care decisions, provided the person fulls
their duties, and the authority is not questioned. However, each time a health care provider requires
a treatment decision by a substitute, they should be considering anew whether the adult has capacity,
and who is the appropriate person to choose from the list.
392
Changes in circumstances could point to
the appropriateness of a dierent substitute decision maker: for example, a dispute with the adult; lack
92 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
of ongoing contact with the adult; or another person higher up in the list becoming available to make
health care decisions.
e health care provider is required to contact the PGT for health care decisions (both major and
minor health care) if there is no one else available,
393
and “is not required to make more than reasonable
eorts” to choose the rst available and qualied person from the hierarchical list.
394
e law does not
permit a health care provider to provide non-emergency care without the consent of a capable adult,
or their substitute decision maker, if the person does not have capacity.
A TSDM has authority to give or refuse consent to health care,
395
including the authority to refuse
consent to life-preserving care in circumstances in which:
• ere is substantial agreement from health care providers that the decision to refuse
substitute consent is medically appropriate; and
• e TSDM has complied with legislative requirements regarding consultation with the
adult, and compliance with known wishes, or when these are unknown, is acting in the
adult’s best interests.
396
Along with representatives and committees, a TSDM does not have authority to consent to the
specic kinds of health care described below in Section 3.7.3.
397
3.7.2 Decision by Advance Directive
e HCCA permits an adult who has capacity to create an advance directive, which is a document that
provides written directions regarding future health care treatment.
398
Advance directives are governed
by Part 2.1 of the HCCA. Instructions in an advance directive eectively amount to consent to, or
refusal of, treatment.
399
In BC, a health care professional may take instructions directly from an appli-
cable advance directive, without consultation with a substitute decision maker, in the event that a
person does not have capacity to make a treatment decision.
400
A health care provider must look to any advance directive for health care instructions only if a health
care provider “does not know of any personal guardian or representative who has authority to make
decisions for the adult in respect of the proposed health care”.
401
In this sense, an advance directive
is third in the hierarchy of substitute decision-making mechanisms. A health care provider must
make a “reasonable eort” to determine whether the adult has an advance directive, or a personal
guardian or representative.
402
If treatment is commenced without awareness of an advance directive,
the treatment must be withdrawn if an advance directive which refuses the treatment subsequently
becomes known.
403
An advance directive has limited application: a health care provider is not required to follow an advance
directive, and must instead obtain the consent of a substitute decision maker, if they reasonably believe
any of the following applies:
• e instructions given do not address the health care decision to be made;
3 | The Legal Framework of Health Care Consent in BC 93
• e instructions given are unclear so that it cannot be determined whether consent has
been given or refused;
• e adult’s wishes, values or beliefs in relation to a health care decision signicantly
changed while the adult was still capable, and since the instructions were written; or
• ere have been signicant medical advances since the advance directive was made
404
that might substantially benet the adult with regards to the health issues addressed in
the directive.
405
In BC the health care provider has the task of interpreting the advance directive.
406
Capacity standard
An adult is capable of making an advance directive if they can understand the nature and consequences
of the proposed advance directive, meaning that the adult understands:
• e scope and eect of the instructions given; and
• at a substitute decision maker will not be appointed to make decisions covered by the
advance directive, except in certain circumstances.
407
3.7.3 Substitute Consent Cannot be Provided
e Health Care Consent Regulation sets out types of health care treatment to which temporary substi-
tute decision makers and representative cannot consent:
Health care to which temporary substitute decision maker cannot consent
5(1) e following types of health care are prescribed for the purposes of section 18 (1) of the Act:
(a) abortion unless recommended in writing by the treating physician and at least one other
medical practitioner who has examined the adult for whom it is proposed;
(b) electroconvulsive therapy unless recommended in writing by the treating physician and
at least one other medical practitioner who has examined the adult for whom it is proposed;
(c) psychosurgery;
(d) removal of tissue from a living human body for implantation in another human body or
for medical education or research;
(e) experimental health care involving a foreseeable risk to the adult for whom the health
care is proposed that is not outweighed by the expected therapeutic benet;
(f) participation in a health care or medical research program that has not been approved by
a committee referred to in section 2;
(g) any treatment, procedure or therapy that involves using aversive stimuli to induce a
change in behaviour.
e above list provides a blanket restriction on substitute consent for some kinds of treatment (psycho-
surgery), and requires additional support for substitute consent for others (abortion and electrocon-
vulsive therapy).
408
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3.7.4 Ranking of Substitute Decision Makers
What if there is both a representative and an advance directive? When an adult is found to be incapa-
ble of making autonomous health care decisions, consent must be sought in ranked order as follows:
1. From a personal guardian appointed pursuant to the Patients Property Act
409
2. From a representative appointed pursuant to the RAA
410
3. From an applicable advance directive, pursuant to the HCCA
411
4. From a temporary substitute decision maker, pursuant to the HCCA.
412
A personal guardian sits at the top of the consent hierarchy. Unless the court orders otherwise, a repre-
sentation agreement is terminated when a personal guardian is appointed.
413
While the decision making powers of a representative will generally take priority over an advance
directive,
414
an adult can specify in their representation agreement that a health care provider need not
obtain a representative’s consent for health care decisions covered in the adult’s advance directive.
415
is eectively prioritizes the advance directive over the representation agreement. When a represen-
tation agreement does take priority, a representative must follow the adult’s known expressed wishes,
including those expressed in an advance directive.
416
As discussed above, TSDMs are chosen to make decisions only when there is no personal guardian,
representative with applicable authority, or applicable advance directive.
3.7.5 Duties of a Substitute Decision Maker
With respect to health care decision making, representatives, TSDMs, and committees have statutory
duties. However, their duties are described dierently in legislation. Generally all substitute decision
makers have similar overarching ethical obligations; for example, the representative must:
(a) act honestly and in good faith,
(b) exercise the care, diligence and skill of a reasonably prudent person, and
(c) act within the authority given in the representation agreement
417
is following discussion focuses on duties relevant to engaging people living with dementia in deci-
sion making.
The Duty to Consult
e TSDM and the representative both have a duty to consult—although the duty is framed slightly
dierent in each statute. e representative is required to:
(a) consult, to the extent reasonable, with the adult to determine his or her current wishes, and
(b) comply with those wishes if it is reasonable to do so.
418
Within one day or one
week the resident could be
demonstrating dierent
abilities, so you’ve always
got to take that into
consideration for that day.
– Former Director of Care
3 | The Legal Framework of Health Care Consent in BC 95
However, the RAA allows a person to contract away their right to be consulted. e
Act states that the above section does not apply if:
(a) a representative is acting within authority given to the representative under
section9, and
(b) the representation agreement provides that in exercising that authority the
representative need only comply with any instructions or wishes the adult
expressed while capable.
419
Such circumstances would apply, for example, to a non-standard representation
agreement which provides authority to give consent even though the adult refuses,
or to “physically restrain, move and manage the adult and authorize another person
to do these things, if necessary to provide personal care or health care to the adult” as
per section 9.
420
In contrast, the TSDM must consult with the adult “to the greatest extent possible”
“before giving or refusing substitute consent.”
421
Based on the language of the respec-
tive statutes, the representative may have a greater obligation, that is to say, to comply,
and not just to consult.
In 2014, the PPA was amended to introduce a duty parallel to the duty to consult.
Section 18(2) states that, “[a] committee must, to the extent reasonable, foster the
independence of the patient and encourage the patient’s involvement in any decision
making that aects the patient.”
422
is meaning of this provision has not yet been
interpreted by the court.
Although the substitute decision making framework in BC requires all substitute
decision makers to involve adults in decision making regardless of capacity, the health
care provider does not appear to have a parallel role to facilitate this process. e
HCCA includes a “right to be involved to the greatest degree possible in all case plan-
ning and decision making”; however, that right is limited to adults who are capable.
423
In summary, based strictly on statutory language:
• e representative has a duty to consult and comply;
• e TSDM has a duty to consult; and
• e committee has a duty to involve the adult.
The Duty to Consider Previously Expressed Wishes
Both a representative and a TSDM are required to comply with previously expressed
wishes made while the adult was capable.
424
e RAA states that:
96 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
(3) If subsection (2) applies but the adult’s current wishes cannot be determined or it is not
reasonable to comply with them, the representative must comply with any instructions or wishes the
adult expressed while capable.
425
A TSDM is required to “comply with any instructions or wishes the adult expressed while he or she
was capable.”
426
e PPA does not contain a similar restriction on the exercise of decision making
authority; however, section 16 permits the Court to impose restrictions or conditions on the commit-
tee’s powers to act.
427
e PGT publishes a handbook for committees
428
,which recommends speaking to the adult directly
about their wishes regarding major health care, as well as consulting with family members and friends
as to prior wishes, values and beliefs, where appropriate.
429
e PGT recommends the committee use
the provisions of the HCCA as a guide when making health care decisions, since the responsibilities of
a TSDM (to whom these provisions apply) and a committee making health care decisions are similar.
ese recommendations are summarized in the handbook as a 3-step process as follows:
• Any known instructions or wishes made by the adult when the adult was capable
• If there are no known prior instructions or wishes made when the adult was capable, the
decision is to be made in accordance with known applicable values and beliefs
• If there are no such known values and beliefs then a decision is to be made in the adult’s
best interests as dened in the Act.
430
e 2007 bill to amend the Adult Guardianship Act contains provisions not yet in force which would
repeal the PPA and introduce the alternative language of “personal guardian” (as an alternative to the
term “committee”), and impose obligations on personal guardians in BC similar to those found in the
RAA and the HCCA. Section 29 of the PPA, which is not in force:
• Sets out general ethical obligations parallel to those in the RAA;
• Creates a duty to comply with previously expressed wishes; and
• States that if no wishes are relevant to the decision at issue, the guardian “must act in the
adult’s best interests, taking into account the adult’s known beliefs and value.”
431
With respect to health care decisions, the factors the personal guardian must consider are identical to
the ones listed in the HCCA.
432
The Duty to Make a Decision in the Adult’s Best Interests
Both a representative and a TSDM must make a decision based on best interests, if the adult’s wishes
are not known.
433
A representative is required to consider the adult’s values as well before resorting
to a best interests approach to decision making. For a TSDM, the adult’s current beliefs and wishes
are one factor the TSDM must consider when deciding what is in the adult’s best interests.
434
Other
factors are:
3 | The Legal Framework of Health Care Consent in BC 97
(b) whether the adult’s condition or well-being is likely to be improved by the proposed health care,
(c) whether the adult’s condition or well-being is likely to improve without the proposed
health care,
(d) whether the benet the adult is expected to obtain from the proposed health care is greater than
the risk of harm, and
(e) whether a less restrictive or less intrusive form of health care would be as benecial as the
proposed health care.
435
In this sense, the HCCA is arguably more prescriptive with respect to the meaning of the concept of
best interests.
e PPA contains quite dierent language. Section 18(1) states that “[a] committee must exercise
the committee’s powers for the benet of the patient and the patient’s family, having regard to the
nature and value of the property of the patient and the circumstances and needs of the patient and
the patient’s family.” As noted earlier, while there is some case law to suggest that subsection 18(1)
is limited to nancial decision making,
436
the case law and commentary characterize the relationship
between committee and the adult as duciary in nature, which requires the committee to act in the
best interests of the person.
437
Although the “best interests” of the adult are always a paramount consideration in guardianship cases
in BC, the courts have not completely eshed out the meaning of the concept of “best interests” in
terms of the role of a personal guardian or committee. e concept is frequently invoked in jurispru-
dence without a denition.
3.8 INTERSECTIONS WITH MENTAL HEALTH LAW
3.8.1 British Columbia’s Unique Mental Health Legal Framework
People living with dementia are sometimes involuntarily committed under the MHA, a decision that
has a signicant impact on health care consent rights. A person living with dementia may be involun-
tarily admitted based on the physician view that the patient’s dementia is a mental disorder requiring
treatment, or due to some other mental health condition. Some physicians are of the view that demen-
tia alone is a mental disorder; however, this perspective has been criticized. As noted earlier, demen-
tia is now included in the American Psychiatric Association’s Diagnostic and Statistical Manual of
Mental Disorders (the DSM-5), under the equivalent term, “major neurocognitive disorder”.
438
Although this project was not intended to review and reform mental health law in BC, below we set
out the law with respect to involuntary admission and consent to psychiatric treatment in order to
provide a comprehensive picture of BC’s health care consent regime.
Mental health law has taken a unique course in BC. People who are involuntarily committed under the
MHA do not have the right to make their psychiatric treatment decisions. ey are “deemed” to have
consented to any psychiatric treatment authorized by the director of a designated facility, a decision
which in practice is made by the treating physician.
439
e deemed consent has no excluded treatments,
98 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Perhaps it’s easier, more paternalistic, more authoritarian perhaps to use the Mental Health
Act from the hospital’s point of view. Rather than have all the dicult conversations.
Families might not be ready from a psychological and emotional point of view, or they are in
disagreement, and they can’t decide who should do what.
– Psychiatrist
and therefore includes electroconvulsive therapy and psychosurgery. Consent to non-psychiatric treat-
ment is governed by the HCCA, despite any involuntary admission.
Under the MHA, people may be involuntarily admitted to a designated psychiatric facility for exam-
ination and treatment based on a physician’s opinion they have a “mental disorder”, and the person:
(i) requires treatment in or through a designated facility,
(ii) requires care, supervision and control in or through a designated facility to prevent the person’s
or patient’s substantial mental or physical deterioration or for the protection of the person or patient
or the protection of others, and
(iii) cannot suitably be admitted as a voluntary patient.
440
Treatment under subsection (i) is further dened in the act to mean: “safe and eective psychiatric
treatment and includes any procedure necessarily related to the provision of psychiatric treatment.”
441
e physician must complete a certicate in Form 4 in order to admit the adult involuntarily.
442
e
person may be detained for up to 48 hours in the rst instance with a medical certicate of one physi-
cian, and for up to one month with a medical certicate from a second physician.
443
Detention can be
further extended in accordance with section 24 of the Act.
Form 5, which is titled “Consent For Treatment (Involuntary) Patient”, requires that the “nature of
the condition, the reasons for and the likely benets and risks of the treatment” be explained to the
patient.
444
e form may be signed by the patient, in which case the director must attest that the patient
was capable of understanding the nature of their authorization to undergo the treatment.
445
If the
patient does not sign the form, the director is given the power to sign the consent form on behalf of
the patient, without assessing incapability to consent to treatment.
446
In doing so, the director attests
that the “patient is incapable of appreciating the nature of the treatment and/or their need for it and is
therefore incapable of giving consent.”
447
e director is given the power to sign the consent form on
behalf of the patient by virtue of section 8, which states:
A director must ensure
(a) that each patient admitted to the designated facility is provided with professional service,
care and treatment appropriate to the patient’s condition and appropriate to the function of the
3 | The Legal Framework of Health Care Consent in BC 99
designated facility and, for those purposes, a director may sign consent to treatment forms for a
patient detained under section22, 28, 29, 30 or42…
In practice, however, the director’s powers are delegated to health care providers, and Form 5s are
completed by treating physicians and nursing sta. It has been noted that the Form 5 process renders
the incapability assessment of the person irrelevant to treatment, and arguably “conates mental
capacity to make a treatment decision with agreement to proposed treatment.”
448
3.8.2 Comparison with Other Canadian Jurisdictions
Other jurisdictions have taken quite dierent approaches to treatment decisions for adults who have
been committed under mental health law. ere are roughly three dierent approaches taken in other
provinces and territories:
1. Patients capable of making decisions with respect to their mental health treatment cannot
be involuntarily committed:
Saskatchewan,
449
Newfoundland,
450
and Nova Scotia
451
e impact of this approach is that the situation of a capable involuntary patient never
arises, and consequently avoids the issue of consent to treatment in the involuntary patient
context. As Robertson states, “[t]he purpose of this requirement is to avoid the situation
which has arisen in some provinces where mentally competent patients who refuse
treatment are committed, thereby eectively ‘warehousing’ them in hospital indenitely
without treatment.”
452
2. Patients capable of making decisions with respect to their mental health treatment have
the right to refuse treatment, subject to an override by a review body based on the patient’s
“best interests”
Alberta,
453
and Yukon
454
e legislation of New Brunswick and Quebec also contain a right to refuse treatment,
but subject to dierent criteria for when refusal can be overridden.
455
3. Patients capable of making decisions with respect to their mental health treatment have
the right to refuse treatment
Ontario,
456
Manitoba,
457
Prince Edward Island,
458
Northwest Territories,
and Nunavut
459
If treatment is refused by capable involuntary patients in these provinces, there is no power
to override the patient’s decision.
.460
In the event of incapability, most provinces provide that treatment decisions are to be made by a
substitute decision maker, usually identied by a ranked list of family members, or the Public Guardian
and Trustee as a last resort.
461
e person with authority to make treatment decisions for incapable
involuntary patients varies from province to province, and may either be a person or a state authority.
462
For example:
100 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
• Saskatchewan and Newfoundland: treatment must be authorized by the attending
physician.
463
• New Brunswick: a tribunal must authorize treatment.
464
• Quebec: a court must authorize treatment.
465
• Ontario: a private substitute decision maker appointed pursuant to health care consent
legislation may authorize treatment, so long as treatment decisions are made in accordance
with the legislation.
466
In a jurisdiction that does allow refusal of treatment, a substitute decision maker usually provides
the consent or refusal in accordance with criteria dictated by the particular province’s legislation.
For example,
• Alberta: the substitute decision maker must make the decision based on the patient’s “best
interests”.
467
• Ontario and Prince Edward Island: the substitute decision maker must make a decision
based on the person’s valid previously expressed capable wishes applicable in the
circumstances, and where these are unknown, in the person’s “best interests”.
468
• Yukon: where the wishes of the patient are unknown, the decision should be made based
on the patient’s known beliefs and values, and where these are unknown, in the patient’s
“best interests”.
469
• Manitoba and Nova Scotia: the substitute decision maker is bound by the patient’s
expressed capable wishes except where this would endanger the health or safety of the
patient or others. Otherwise the decision must be made in the patient’s best interests.
470
Each of these jurisdictions has developed mental health legislation that provides for greater involve-
ment of the patient, family, substitute decision makers, and public guardians in decision making as
compared with BC.
3.8.3 Involuntary Committal of Adults Living with Dementia
Involuntary commitment is only permitted under the law if a person is not suitable for voluntary
treatment. It is possible that a person with a pre-existing serious mental illness could also be diagnosed
with dementia later in life, which could render addressing their mental health needs more complex.
However, mental health facilities were not designed to address the physical and mental health, and
other social and health care needs, of an older adult population.
In terms of health care decision making, three signicant impacts of involuntary commitment are:
• e person living with dementia does not have the right to consent to their own
psychiatric treatment, regardless of capacity;
3 | The Legal Framework of Health Care Consent in BC 101
• Substitute and supportive decision makers chosen by the person living
with dementia have no right to make decisions regarding psychiatric
treatment, or participate in decision making regarding psychiatric
treatment; and
• A guardian or committee of the person appointed by a judge to make
health care decisions for the person has no authority to make decisions
regarding psychiatric treatment.
e BC Ombudsperson has criticized the use of involuntary commitment to place
older people into long-term care when they do not have capacity for care facility
admission decisions.
471
In its review of the provision of health care for seniors in BC,
the Ombudsperson noted that using the MHA to admit a senior to a designated
facility for treatment, including for treatment for dementia, ought to be “an extraor-
dinary situation” where to do so is the “only viable option that will allow for his or her
protection.”
472
e legal process is that:
• e adult is placed in a designated mental health facility—usually a
hospital—and detained pursuant to the involuntary admission procedures
set out in section 22 of the MHA;
• e initial period of committal is renewed on an ongoing basis in
accordance with section 24 of the MHA as needed; and
• e adult is transferred to a long-term care facility pursuant to the
section 37 of the MHA, which permits patients extended leave from a
designated facility.
is involuntary detention can be challenged by application to the Mental Health
Review Board, or directly to the Supreme Court;
473
however, at least one expert has
noted that these remedies are rarely used to challenge the detention of older people.
474
Section 37 provides:
…if the director considers that leave would benet a patient detained
in the designated facility, the director may release the patient on leave
from the designated facility providing appropriate support exists in the
community to meet the conditions of the leave.
475
Leave conditions can be imposed on the patient. Importantly, although the adult
is not residing in a psychiatric facility, they are still “involuntary patients” for the
purposes of the MHA, and subject to its regulation. erefore, the person receives
psychiatric treatment for their “mental disorder,” which could include anti-psy-
chotic medications, without the right to make such decisions, or have their substi-
tute or supportive decision makers participate in decision making.
476
e involuntary
committal approach can shut out family caregivers and spouses.
He has a very nice room… but
he doesn’t just have a mental
condition; he has Alzheimer’s.
What I would like for my
husband is that he would get
a little music one day, or go
out for meals. They keep him
in bed. Someone brings him
a tray, and when I come at
noon, I have to prop him up,
because he is drowsy… he
is on all kinds of medication,
and the sta say, ‘oh, he had
a snack.’ He is there to die.
– Family caregiver
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3.9 REVIEW OF HEALTH CARE DECISIONS
AND ACCESS TO JUSTICE
In this section, we outline the review options available to people living with dementia,
their family, and supportive or substitute decision makers who have concerns about
health care decision making.
Family members who are dissatised with health care team actions regarding consent
are generally directed toward the complaint mechanisms discussed below. ese
options appear to have very limited potential to eect real and timely change for
people living with dementia who feel their rights have not been respected. Rather,
these mechanisms look to systemic solutions that could improve health care delivery.
For people who wish to change the health care treatment decision, challenge a nd-
ing of incapability, or change their substitute decision maker, the rst three legal
processes discussed below are key.
3.9.1 Review Bodies
e current review mechanisms available are:
Applications to a court or tribunal
• Court review of decisions under the HCCA;
• Court review of a committeeship order (declaration of incapability) and
the appointment of a committee under the PPA;
• Mental Health Review Board review of involuntary committal order
under the MHA;
• Court determination of a civil law suit in negligence; and
• Human Rights Tribunal determination of a complaint alleging
discrimination under the BC Human Rights Code
Complaint to review bodies
• Patient Care Quality Oces and Review Boards;
• Licensing of Community Care Facilities;
• Assisted Living Registry;
• Health care professional regulatory bodies and the Health Professions
Review Board; and
• Ombudsperson.
Once a person is determined
incapable, then that person
becomes just quiet about the
whole thing, is taken to the
facility, even when they are
capable. They have no way of
reaching out because they are
deemed incapable, especially
if they have disabilities, such as
hearing or visual impairments.
– Advocate
3 | The Legal Framework of Health Care Consent in BC 103
Courts and Tribunals
Court Review of Decisions under the HCCA
People may apply to the court for orders relating to implementing and interpreting advance directives
and health care consent decisions made by substitute decision makers.
477
On such an application, the
court may make a broad range of decisions, as follows:
(a) order the adult to attend at the time and place the court directs and submit to one or more
assessments of incapability;
(b) give directions respecting
(i) the interpretation of a provision of an advance directive, or any other health care
instruction or wish, made or expressed by an adult when capable, or
(ii) who should be chosen to provide substitute consent under this Act for an
incapable adult;
(c) conrm, reverse or vary a decision by
(i) an adult’s representative or personal guardian, or
(ii) a person chosen to provide substitute consent under this Act, to give or refuse consent to
health care or admission to a care facility;
(d) make any decision that a person chosen to provide substitute consent under this Act
could make.
478
In addition, any person can apply to the court for an order voiding an advance directive on the basis
that fraud, undue pressure, or some other form of abuse or neglect was used to induce an adult to make,
change or revoke an advance directive.
479
e following people may apply to court for an order:
(a) a health care provider responsible for the care of an adult who is incapable of giving or refusing
consent to health care;
(b) an adult’s representative or personal guardian;
(c) a person chosen under this Act to give or refuse substitute consent to health care or admission to
a care facility on behalf of an adult who is incapable;
(d) an adult who is assessed as incapable of giving or refusing consent to health care or admission to
a care facility.
480
e Court has the power to order an assessment that could result in a nding of capacity, change the
substitute decision maker, or void consent which was not provided in a manner consistent with the
Act. Further, nothing in the Act limits the inherent jurisdiction of the Supreme Court to act in a parens
patriae capacity, which gives the court broad jurisdiction to make an order to protect a person who
does not have capacity.
481
Review of Committeeship Order
A year after a committeeship order is made, any person may apply to the Supreme Court for an order
that the person is no longer incapable.
482
e application requires adavits of two medical practi-
tioners.
483
If the application is successful, the older person living with dementia would become entitled
104 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
to make their own health care decisions, subject to the health care provider’s obligation to consider
capacity each time health care is proposed. An application can be made to rescind the appointment of
a committee, and have another committee appointed pursuant to s. 6 of the PPA.
Review of Decisions under Mental Health Act
Under section 31 of the MHA, a person who has been involuntarily committed has a procedural right
to request a second medical opinion on the appropriateness of the treatment authorized by the director
at particular intervals. However, while the director “must consider whether changes should be made in
the authorized treatment” after receiving the second medical opinion, they are not required to accept
the opinion, even if the second medical opinion is in direct conict with the rst physician’s opinion.
A patient who has been involuntarily committed under section 22 of the MHA is entitled to a review
panel hearing at specied intervals to determine whether committal should continue.
484
e review
panel, however, has no power to review the appropriateness of the patient’s treatment regime. e
intervals are as follows:
• Within the rst two one-month periods of committal: a requested review panel hearing
must be held within 14 days of the request.
485
• After the rst two months of committal: a requested review panel hearing must be held
within 28 days of the request.
486
• After that: a review panel hearing may only be requested when at least 90 days have passed
since the result of the last hearing.
487
e review panel must issue a determination with 48 hours of the hearing, and provide written reasons
for the decision within 14 days of issuing the determination.
488
Judicial review of a determination of a review panel is possible pursuant to section 24.2 of the MHA.
Such an application must be led in the BC Supreme Court within 60 days from the date the review
panel decision was issued. Further, the person who has been involuntarily committed, or anyone else,
may to apply for a writ of habeus corpus, an old legal remedy which allows a person to appear before a
judge to review the lawfulness of any detention.
489
However, “habeus corpus is rarely used to challenge
mental health detentions.”
490
In addition, a patient or a person on their behalf may apply to the court for an order that the person not
be apprehended, transported or admitted to a designated facility, or be discharged from one pursuant
to section 33(2) of the MHA if they believe that there is not sucient reason or legal authority for a
certicate.
Civil Liability in Negligence
e HCCA does not contain civil remedies for breach of the legislation. However, the law of negli-
gence applies to a breach of statutory duty in Canada.
491
A breach of statute is considered evidence of
negligence, rather than a separate tort.
492
A defendant will not be held liable in negligence if they can
prove they acted reasonably in the circumstances,
493
particularly because the HCCA contains a clause
3 | The Legal Framework of Health Care Consent in BC 105
protecting people from liability “in the performance of a duty or the exercise of a power or function
under this Act if the person has acted in good faith and used reasonable care.”
494
Informed consent cases in BC have generally been brought pursuant to the established common law
doctrine of informed consent, in tort.
495
e Court has armed the fundamentality of establishing
informed consent as a defence to allegations of professional negligence.
[I]t has been rmly entrenched in the jurisprudence that a physician may be found negli-
gent even where the medical treatment complies with the expected standard of care, if he
or she has failed to obtain the patient’s informed consent to the treatment that has caused
the injury.
496
In one recent negligence decision involving an older person with capacity issues the Court briey
referenced section 9 of the HCCA in support of the common law position on the acceptable method
of giving consent. e plainti had alleged negligence and battery of her deceased mother in relation
to a failed resuscitation eort on the basis that the plainti had not provided informed consent to the
resuscitation. e Court of Appeal dismissed the plainti ’s appeal, and allowed the doctor’s appeal,
nding that the evidence demonstrated the doctor had implied consent, and perhaps express consent,
to attempt resuscitation. In doing so, the Court of Appeal referenced section 9:
[104] Dr. Sweet submits that even if one were to accept that there was a conict on
the evidence regarding express consent, the law is clear that where a physicianreason-
ably infersa patient is consenting or has consented to particular treatment, consent
may be inferred. As pointed out inGlaholt v. Ross2011 BCSC 1133(CanLII)at paras.
186, theHealth Care (Consent) and Care Facility (Admission) Act, R.S.B.C. 1996, c.
181codies this common law principle.Section 9(1)thereof provides that consent to
health care may be “expressed orally or in writing or may be inferred from conduct.” e
Court inGlaholtalso cited a passage from the judgment of Mr. Justice Linden inAllan
v. New Mount Sinai Hospital(1980)1981 CanLII 1694 (ON SC),109 D.L.R. (3d) 634
(Ont. H.C.J.),rev’d on other grounds(1981)1981 CanLII 3002 (ON CA),125 D.L.R. (3d)
276 (Ont. C.A.)that:
Whether a doctor can reasonably infer that a consent was given by a
patient, or whether he cannot infer such consent, and must respect the
wishes of the patient, as foolish as they may be, always depends on the
circumstances. [At 641.]
[105] e trial judge correctly stated this principle at para. 124 of her reasons, para-
phrasing a passage from Picard J.A. and Gerald Robertson,Legal Liability of Doctors and
Hospitals in Canada, 4th ed. (2007)to the eect that “[c]onsent or implied consent to
medical treatment negates the commission of the tort of battery; … consent may be oral
or written, but it does not necessarily have to be explicit; consent may also beimplied from
the words or conduct of a patient”. e plainti has not sought to persuade us that this is
not a correct statement of the law.
497
106 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
However, ultimately, the case was decided in accordance with tort law principles, without reference
to the HCCA. e Supreme Court of BC conrmed this approach in a recent decision involving an
allegation of negligence in the context of a failure to obtain informed consent:
e landmark decisions in this area all connect liability with a failure to ensure informed
consent based on the tort of negligence: Hopp v. Lepp,[1980] 2 S.C.R. 192 and Reibl v.
Hughes, [1980] 2 S.C.R. 880. Consequently, a determination of the issue of informed
consent requires consideration of the standard elements of negligence: the existence of a
duty of care; the failure to meet the requisite standard of care; and a causative connection
between that failure and the injuries alleged.
498
e test for causation in medical negligence cases involving a failure of a health care provider to
disclose has been described as a “modied objective” one, requiring the decision-maker to consider a
combination of objective and subjective factors in determining whether the failure to disclose actu-
ally caused the harm complained of.
499
e test, as stated in the Supreme Court case of Arndt v.
Smith, requires:
…that the court consider what the reasonable patient in the circumstances of the plainti
would have done if faced with the same situation. e trier of fact must take into consid-
eration any “particular concerns” of the patient and any “special considerations aecting
the particular patient” in determining whether the patient would have refused treatment
if given all the information about the possible risks.
500
It has been noted that this test has proven dicult for plaintis to meet because judges tend to
conclude that the plainti would have deferred to the health care provider’s recommendations to
proceed, even if the risks had been disclosed.
501
Cases alleging negligence on the part of a health
care provider on the basis of a failure to obtain informed consent to health care are common in BC;
however, cases involving older people with capacity issues are rare.
502
BC Human Rights Tribunal
Provincial human rights law prohibits discrimination in the provision of services to the public, which
includes health care services.
503
A person may le a complaint with the BC Human Rights Tribunal
regarding discrimination in the provision of health care services which are generally available to the
public.
504
Discrimination on the basis of age and mental and physical disability are grounds which
may be particularly pertinent to older people living with dementia who thinks their right to informed
consent was not respected due to discrimination.
505
Remedies available to the Tribunal in dealing with
a complaint include an order that the contravening party:
• Cease the discrimination and ameliorate the eects of the discriminatory practice;
• Provide the person with the opportunity or right that was denied to them; or
• Pay the aggrieved party compensation.
506
3 | The Legal Framework of Health Care Consent in BC 107
Complaints to Review Bodies
A number of complaints processes may be available to people living with dementia; however,
complaint process remedies tend to address systemic practice issues rather than resolve an individual’s
circumstances.
Patient Care Quality Oce and Review Boards
In 2008, the BC Government introduced the Patient Care Quality and Review Board Act as a means
of establishing a complaints process for patients, clients, and facility residents with respect to quality
of health care. e Act established an independent review mechanism by way of Patient Care Quality
Review Boards.
507
A quality oce and review board now exists in each health authority.
Patient Care Quality Oces (PCQO) and Review Boards may address complaints relating to any
health care or service:
• Provided by a health authority or another person pursuant to a contract with a
health authority;
• Funded in whole or in part by a health authority; or
• Delivered in a hospital or private hospital (which includes an extended care facility) or a
licensed community care facility.
508
Long-term care facilities which are licensed by, or receive funding from, a health authority fall within
the ambit of the PCQO and Review Boards,
509
including actions by health care assistants
510
which
are not technically the provision of health care, such as housekeeping, food, security, and parking
services.
511
Care provided by nursing sta or other health care professionals at a licensed long-term care
facility may be the subject of a complaint to both the PCQO and the appropriate regulatory college.
is jurisdiction does not include complaints about:
• Health professionals providing services in private practice, where the services are funded
by MSP or PharmaCare (e.g. general practitioner and pharmacist services);
512
and
• Involuntary admissions under the MHA.
513
Where complaints involve physicians or other health care professionals that have been contracted or
employed by a health authority, the Review Board will assess the nature of the complaint to determine
if they are the most appropriate agency to deal with the complaint. e Review Board may refer the
complaint to the relevant regulatory college.
As individual complaint reviews are not publicly available, it is dicult to get a sense of the kind of
actions the Board will take in response to a request for review. Legislation permits a board to make
recommendations to the Minister of Health and the health authorities regarding improving the qual-
ity of patient care in BC;
514
however, the health authorities are not legally obligated to implement any
recommendations unless so directed by the Minister. Instead, they are required to carefully consider
and formally respond to each recommendation.
515
108 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
e Patient Care Quality Review Board 2016/2017 Annual Report to the Ministry of Health identi-
ed the following top ve concerns raised through the complaint mechanism process:
• Care issues, such as deciencies in care, misdiagnosis or medication-related concerns;
• Attitude and conduct;
• Accessibility, such as wait times for surgery or test results, or availability of services;
• Communication; and
• Discharge arrangements.
516
e Review Boards publish an annual report on recommendations for which they have received a
response from a health authority. e most recent report contains several recommendations relevant
to health care consent for older people, including a recommendation that:
e health authority initiate an in-service training module for all personnel who work with patients
who are near or in the end-stages of life to determine what the protocols for informed consent and
the revocation of a representation agreement are with reference to:
• e Health Care Act;
• e Representation Agreement Act;
• e Adult Guardian Act (sic);
• e Public Guardian and Trustee Act; and
• e Health Care (Consent) and Care Facility (Admissions) Act.
517
In response, the Interior Health Authority has agreed to “develop an lnter-professional Practice
Guideline and supporting checklist for situations when an incapable adult’s legal representative is
believed to be unable or unwilling to fulll their responsibilities under the Representation Agreement
Act.”
518
Training for social workers will be provided on the Guideline, as they are a resource for those
working in end of life care.
519
With respect to a recommendation for Vancouver Coastal Health Authority regarding a complaint
related to “Quality of Care, Poor Communication, Lack of Translation Services and Lack of Consent
at a Hospital”, the Review Board made a number of recommendations, including:
1. e health authority conduct a review or survey of its nursing and medical sta at this hospital
to determine whether they have been fully educated on when and how to use interpreter services,
focusing on the health authority policy requirements that interpreters are used when there is a
language barrier of any kind.
2. e health authority ask the hospital chief of medicine investigate whether the approach to
consent in this case is an aberration or is a systemic reection of hospital culture, and whether it is
determined to be a systemic issue or not:
a. Review hospital’s consent process;
b. Determine what solutions are going to be implemented to adhere to the consent process;
3 | The Legal Framework of Health Care Consent in BC 109
c. Undertake what changes are necessary if this is a systemic issue; and,
d. Report back to the hospital Chief Operating Ocer.
520
e annual report identies care, including “medication-related concerns” as one of the top ve
concerns. Remedies available the through the PCQO appear to address systemic issues, rather than
provide for individual remedies; however, reporting by the Review Board does conrm that informed
consent is an issue of concern.
Complaints to Licensing of Community Care Facilities
Long-term care facilities must be licensed in accordance with standards or requirements set out in
the Community Care and Assisted Living Act (CCAL Act).
521
One of the primary duties of a Licensing
Ocer, as delegated by a Medical Health Ocer under the CCAL Act, is to investigate complaints
and/or allegations that a care facility does not meet the requirements of the CCAL Act and its regula-
tions.
522
Licensing Ocers have the power to inspect care facilities in response to a complaint, and to
undertake follow-up inspections of the purposes of ongoing monitoring.
523
Each health authority has
a local licensing program to which complaints can be directed.
524
Actions which a Licensing Ocer
may take in response to a complaint are:
• Attempt to resolve the issue through discussions with the licensee;
• Suspend a license, or attach conditions to it;
• Impose a ne; or
• Cancel the licence and close the facility.
525
Complaints to the Assisted Living Registry
Complaints about an assisted living facility can be made to the Assisted Living Registry, which has the
authority to investigate complaints that that the operation of a facility has put the health and safety
of residents in the facility at risk.
526
e Assisted Living Registrar has the power to suspend or cancel
a registration, or attach conditions to a registrationwhere it is found that the facility has not met
requirements imposed by the CCAL Act or the conditions of its license.
527
Health Professions Review Board
e Health Professions Review Board (HPRB), which was created in 2009, is an independent,
quasi-judicial, administrative tribunal established under Part 4.2 of the Health Professions Act. Its stated
mission is “to provide the public with independent, transparent and respectful review and early reso-
lution processes that determine or resolve the health professions issues under review in an unbiased,
timely and cost-eective manner.”
528
e HPRB reviews decisions made by the inquiry committee of
any of the designated health professions’ colleges.
529
e HPRB is eectively an independent appeal
mechanism with the power to:
• Conrm the original decision;
• Direct the inquiry committee to make a substituted decision; or
• Send the matter back to the inquiry committee for reconsideration.
530
110 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Our research indicates that college complaints reviewed by the HPRB alleging non-compliance
with the consent requirements of the HCCA are uncommon. Further, the cases involving allegations
of a failure to obtain informed consent by a physician or surgeon were mostly not relevant to the
themes of this project, tending to involve allegations that a surgeon had failed to inform a patient of
a potential complication which the patient had ultimately experienced.
531
In addition to these types
of cases, several consent decisions reviewed included a notation by the Inquiry Committee, not that
the physician or surgeon had failed to obtain consent, but that documentation of consent was lack-
ing. In such cases, the Inquiry Committee generally incorporated a recommendation that the physi-
cian make improvements to their consent documentation processes.
532
e College of Physicians and
Surgeons of BC has conrmed that they receive very few complaints regarding consent for people
living with dementia.
533
However, several 2016 decisions are worth mentioning because they suggest the College of Physician
and Surgeon’s Inquiry Committee lacks a robust understanding of the law of informed consent. In
one case, a family member complained about in-home palliative care provided by a physician to her
90-year-old father who had cancer.
534
e family member, who was the substitute decision maker,
alleged that the physician failed to obtain her informed consent for certain pain medications which
were given to the Complainant’s father, and which the Complainant alleged precipitated his death.
Ultimately, the Inquiry Committee was not critical of the physician’s care of the patient, and found
that the pain medication provided to him 19 hours before he died was not the cause his death. e
HPRB conrmed the Inquiry Committee’s disposition. However, as set out by the HPRB in the
following excerpt, the Inquiry Committee was apparently of the view that there are practical limits to
a physician’s obligations to have informed consent discussions with patients and their families:
[36] Regarding the issue of consent, the Inquiry Committee agreed that the Registrant did
not obtain the consent of the complainant or his family prior to injecting the Nozinan. But
the Inquiry committee concluded that “it is not always reasonable or practical for a physi-
cian to have an informed consent discussion with patients and families prior to the admin-
istration of every medication.” A review of the medical records conrms that the father was
having trouble with pain management at the time of the injection. is was corroborated
by accounts from the nurse and Registrant, who noted that “physical suering in the form
of pain behaviour (moaning) was witnessed and documented by the doctors and RNs
during his hospital stay and by myself and the Home Care Nurse when visiting his home.”
[37] e Complainant disagreed with the Inquiry committee ndings on consent related
to the nal injection of Nozinan prior to her father’s death. e Complainant believes that
the Registrant has a professional obligation to obtain consent from the (family members)
prior to providing end of life treatment to (the father), particularly when the medications,
as provided, could cause sudden death. e Complainant felt that, as a “substitute decision
maker,” she would have “denitely refused” to take such kind of end-of-life treatment...
e HPRB did not address in any detail the Complainant’s argument that the physician had an obli-
gation to obtain informed consent prior to the administration of the pain medication even though
the Inquiry Committee found that informed consent for the medication had not been obtained.
e HPRB simply reiterated the Inquiry Committee’s conclusion that “the treatment oered to the
3 | The Legal Framework of Health Care Consent in BC 111
Complainant did not warrant criticism”, and determined that the Inquiry Committee’s decision fell
within the range of possible, acceptable outcomes, and as such, constituted a reasonable disposition.
e HPRB did not view lack of informed consent to be a signicant practice error.
A second problematic decision of the HPRB concerned a complaint by a patient against a private
practice psychiatrist. e patient alleged the physician had not advised her of the risks of the type of
therapy being proposed, and as such she had not provided informed consent prior to commencing
treatment.
535
In its decision, the HPRB noted the College’s submission that:
they did not consider the matter of consent through the lens of this legislation and that it
is beyond the scope of the Review Board to inquire into the application of this legislation.
Further, the College submits that theHCCCFAA“…is not applicable to this matter
as it is legislation enacted to protect the interests of individuals whose ability to make
health care decisions is limited or incapacitated, rather than for individuals who voluntarily
submit to medical treatment.”
e HPRB recognized the College’s failure to properly consider the HCCA in this case, and its
misinterpretation of the role of the HCCA.
536
Regardless, the HPRB was ultimately “satised that
the requirements for consent as required byHCCCFAA, s.6and the evidence of consent by the
Complainant as required inHCCCFAA s.9(1)are demonstrated in the Record.”
537
ey found that
the Complainant had provided consent by way of conduct, by virtue of her regular attendance at
psychotherapy sessions. e Board’s decision was largely focused on concerns regarding the illegibility
of le notes, rather than the Complainant’s right to be informed of risks.
Oce of the Ombudsperson
e Oce of the Ombudsperson will investigate complaints about administrative decisions or actions
of public agencies. Such complaints may relate to situations involving inadequate reasons, unreason-
able delay, unfair procedures, rudeness, negligence, oppressive behaviour, or unlawfulness.
538
Public
agencies within the jurisdiction of the Ombudsperson include hospitals, health authorities, and
health-related agencies, including the Medical Services Plan and Pharmacare.
539
e Ombudsperson
may investigate complaints in relation to processes and procedures employed by the public agency
in taking an action or making a decision, rather than the merit of the actual action taken or decision
made. e Ombudsperson does not have the power to substitute its decision on a clinical matter such
as appropriate treatment, or a nding of incapability to make a decision regarding health care. e
Ombudsperson also has the power to initiate its own investigations into systemic matters and produce
reports. e report of the Ombudsperson into systemic issues in relation to seniors’ care is, often cited
in Conversations about Care, is an example of such a report.
540
3.9.2 Access to Legal Aid
Legal aid in BC is provided by the Legal Services Society of BC in the form of legal information,
advice and representation to low-income people who meet certain nancial and other eligibility
requirements.
541
e service is primarily funded by the provincial government, with some non-gov-
ernment grants.
542
Assistance is delivered in BC via a mixed model that includes:
112 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
• A tari system to fund legal counsel for people who qualify for assistance;
• Legal information clinics across the province;
• Family legal advice justice centres;
• Court house duty counsel;
• Various legal advice telephone services; and
• Some specic services for Indigenous people.
543
Legal representation is also provided through various community programs funded
primarily by the Law Foundation of BC and the Ministry of Justice.
e legal aid tari is only available in minimal circumstances, largely for criminal
matters likely to involve personal liberty deprivations. In the civil context, legal aid
is largely restricted to family law matters involving violence and the safety of chil-
dren.
544
Limited legal aid may be available for some matters involving MHA issues
and restricted immigration matters likely to involve removal from Canada.
545
Legal aid is not available for any of the matters discussed above, other than some
reviews under the MHA, and some human rights matters. In particular, legal aid is
not available to obtain advice or representation regarding:
• A formal or informal nding of incapacity to make a health care decision;
• A heath care provider’s choice of TSDM;
• A health care decision made by a substitute decision maker, including a
decision regarding use of a restraint under the RC Regulation
546
;
• e interpretation by a health care provider or substitute decision
maker of an advance directive or other health-related wish expressed
while capable; or
• An application to be appointed committee of the person
pursuant to the PPA.
Lack of legal aid funding not only impacts low income people who do not have the
nancial means to pursue a court application, but also those people who, because of a
nding of incapability, may have diculty accessing their nancial assets.
3.9.3 Capacity to Retain and Instruct Counsel
e test for capacity to instruct counsel is a common law test deriving from the
general principles of contract law and the law of agency.
547
e test is considered
to have a relatively high threshold since it requires an understanding of legal and
nancial issues.
548
Eectively, the person must be capable of understanding the
retainer’s terms, and “forming a rational judgment of the eect upon his interests”.
549
People lose all their rights,
and they don’t have access
to money, so they don’t
have access to lawyers or an
advocate of any kind, and
nobody is really looking out
for their rights. And when
you are in a locked ward, or
if you are under a committee
order, some people have said
‘this is worse than being in
prison’; you have less rights
than a prisoner does in jail.
– Lawyer
3 | The Legal Framework of Health Care Consent in BC 113
Determining capacity to instruct and retain counsel requires an assessment of the facts of each case,
and it is not the subject of an articulated test.
550
e Law Society of BC Code of Professional Conduct for BC (the Code) imposes some limitations on
a lawyer’s ability to represent “clients with diminished capacity;” however, the language of Rule 3.2-9
is clear that lawyers are permitted to represent clients who have capacity issues. e rule stipulates that
“When a client’s ability to make decisions is impaired because of minority or mental disability, or for
some other reason, the lawyer must, as far as reasonably possible, maintain a normal lawyer and client
relationship.”
551
e Code includes language that recognizes the variability of mental capacity, under-
scores that capacity is not determined by disability, and grounds the ethical rule in a test determined
by the particular legal matter at issue:
[1] A lawyer and client relationship presupposes that the client has the requisite mental
ability to make decisions about his or her legal aairs and to give the lawyer instructions.
A client’s ability to make decisions depends on such factors as age, intelligence, experience
and mental and physical health and on the advice, guidance and support of others. A
client’s ability to make decisions may change, for better or worse, over time. A client may
be mentally capable of making some decisions but not others. e key is whether the client
has the ability to understand the information relative to the decision that has to be made
and is able to appreciate the reasonably foreseeable consequences of the decision or lack of
decision. Accordingly, when a client is, or comes to be, under a disability that impairs his
or her ability to make decisions, the lawyer will have to assess whether the impairment is
minor or whether it prevents the client from giving instructions or entering into binding
legal relationships.
552
In contrast, the test for capacity to make a section 7 representation agreement for supportive or substi-
tute decision making, as set out in section 8 of the RAA, is generally considered to have a low thresh-
old. e Act states explicitly that “An adult may make a representation agreement consisting of one
or more of the standard provisions authorized by section 7 even though the adult is incapable of (a)
making a contract...”
553
In its report on Common-Law Tests of Capacity the BCLI identied the relationship between these
two capacity tests as creating a barrier to retaining counsel for people with capacity issues. e report
notes that “in practice legal counsel tend to shy away from accepting a retainer from a person whose
mental capacity is in issue in a court proceeding. So such people can nd themselves caught in a grey
area in the law.
554
Law Society of BC Practice Advisor Barbara Buchanan QC has written that the inability to enter into
a contract with a lawyer will generally pose a barrier to representation, even in relation to the drafting
of a representation agreement. She states that:
…a lawyer should typically not act for a person who is otherwise incapable of entering into
a retainer agreement with the lawyer. e Ethics Committee has not, as yet, given an opin-
ion on whether it would recommend a change to BC Code rule 3.2-9 to clarify whether
114 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
a lawyer may act for a client for a section 7 representation agreement in a situation where
the client may be otherwise incapable of making a contract.
555
To resolve this issue, the BCLI ultimately recommended that BC should amend several acts, including
the Adult Guardianship Act, HCCA, MHA, and PPA“to provide that if the capacity of a person is in
issue in a proceeding under the act the person is deemed to have capacity to retain and instruct counsel
for the purpose of representation in the proceeding”.
556
As soon as you leave the facility, they are going to do what they are going to do.You have to not only
care for the individual, you have to advocate through the whole damn system. That’s the pain of this:
you are not only caring for your loved one, 36 hours a day. But you are also ghting with the system.
– Family caregiver
4 | Consent and Chemical Restraint 115
BC has developed legislation governing the use of restraints in long-term care. e Residential Care
Regulation (RC Regulation) sets out rules for agreement to the use of a restraint in the context of long-
term care, which apply to medication being used as a form of restraint. In this chapter we:
• Review the legal framework for agreement to use of a restraint in long-term care;
• Contrast it to the general consent provisions set out in the Health Care (Consent) and Care
Facility (Admission) Act (HCCA), and with the common law;
• Discuss approaches taken in some other jurisdictions, particularly to explore the meaning
of a chemical restraint, which is not currently dened in BC law; and
• Explore the meaning of the concept of chemical restraint.
is chapter is important to the topic of health care consent for people living with dementia because
the RC Regulation and the HCCA appear to provide for dierent rights and obligations, depending on
whether the medication use is classied as a form of restraint.
e health care consent provisions of the HCCA make no reference to restraint. In this chapter we
do not analyze the care facility admission provisions of the HCCA, which may be brought into force
in 2019. However, we note that they include basic prohibitions against using restraints for discipline,
punishment or convenience.
557
ese statutory safeguards are limited in application to restraint by
“physical means” or in a “prescribed manner”.
558
It is unknown yet whether any other means of restraint
will be prescribed, and what they might be.
CHAPTER 4
Consent and Chemical Restraint
116 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
e law across Canada governing the use of restraints, and in particular chemical restraints, is sparse
and variable. Some jurisdictions have regulated use; others have not. One commentator has noted,
“there is widespread variation in the quality of existing legislation in this eld and a low common
denominator.”
559
Even under the common law, the duty to restrain under some certain circumstances
remains unclear.
e use of restraints in a health care setting, whether it be long-term care or a mental health context,
comes face to face with issues of consent, since the controversial use of restraints often involves the
application of a restraint without consent—either by the person being restrained, or by a substitute
decision maker. While a restraint is not always considered the provision of health care, its use in a
health care setting, particularly in the context of facilities wishing to control or limit the behaviour of
people living with dementia, is highly relevant to the themes of this report.
4.1 THE LAW OF RESTRAINT IN BC
4.1.1 Common Law
In Canada, even where no statutory authority to restrain exists, there is a common law right and duty
to restrain a person under care in emergency situations to protect the person or others from harm.
560
e existence of this duty was referred to in a Supreme Court of Canada decision from the 1970s.
561
A few later cases (largely from Ontario) have further discussed this common law duty.
562
e duty has
been referred to in at least one BC decision.
563
e cases contain little commentary on the scope of this
common law duty, beyond stating that “[t]he test for the use of restraints is stringent.”
564
Although the
scope of the power is unclear, one writer has suggested that it is likely the common law duty would be
limited by the following:
• ere would need to be a reasonable belief that a patient poses an imminent danger to the
safety of sta members and other patients, or to the patient’s own safety.
• Any forcible administration of medication would need to be delivered with reasonable
skill and care, and represent the least intrusive option available.
• e power to restrain would likely endure only so long as there is a genuine threat of
violence or aggression.
565
4.1.2 Statutory Regime Governing Restraint in Long-Term Care
e law on the use of restraints in long-term care is set out in the RC Regulation,
566
as prescribed by
the Community Care and Assisted Living Act (CCAL Act).
567
All long-term care facilities licensed under
the CCAL Act must comply with the RC Regulation, including the provisions regarding the use of
restraints, which we describe in this chapter.
As we discuss in greater detail in Chapter 5, older people living with dementia receive care in many
dierent environments. ere are circumstances in which the restraint provisions of the RC Regulation
do not apply. For example:
4 | Consent and Chemical Restraint 117
• Long-term care delivered in private hospitals or extended care hospitals
is governed by the Hospital Act, which does not regulate the use of
restraints.
568
• Practice involving people on extended leave under the Mental Health
Act is governed by mental health law, which does not limit the use
of restraints.
• ere is no statute that applies to the use of restraint in community,
such as in a person’s private home, or in an adult day centre. In
terms of medication used as a restraint, the HCCA would apply to
those circumstances. Non chemical restraints would be governed by
the common law.
However, it is anticipated that the new regulation associated with Part 3 of the
HCCA which is expected to come into force in 2019 will widen the application of
the restraint regulations in the RC Regulation to a broader range of care facilities,
including hospitals.
569
e RC Regulation denes restraint as “any chemical, electronic, mechanical, physical
or other means of controlling or restricting a person in care’s freedom of movement
in a community care facility, including accommodating the person in care in a secure
unit”.
570
Chemical restraint is not dened in the legislation, nor is any other kind
of restraint.
Who can Agree to use of a Restraint?
In non-emergency situations, a restraint can be used if written agreement is
provided by both:
(i) the person in care, the parent or representative of the person in care or the
relative who is closest to and actively involved in the life of the person in care, and
(ii) the medical practitioner or nurse practitioner responsible for the health of
the person in care.
571
e RC Regulation denes a “parent or representative” collectively as:
…a person who… in the case of an adult, has authority…under the
Health Care (Consent) and Care Facility (Admission) Act or the Patient’s
Property Act, or under an agreement under the Representation Agreement
Act to make health or personal care decisions on behalf of the adult,”
572
adding that “nothing in this regulation confers on the person any greater author-
ity to make health or personal care decisions than the person has under those Acts
or under an agreement under the Representation Agreement Act.”
573
e notion of a
I think in the hospitals, for
example, in acute care, it’s
very well known what you
need to do. But I think that
in residential care—it’s
bit of a gong show.
– Health authority sta
118 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
representative in section 74 seems intended to reference a legal substitute decision maker for health
care or personal decisions.
While the HCCA sets out a clear hierarchy of who is entitled to provide substitute consent—starting
with spouse and ending with the Public Guardian and Trustee (PGT) as substitute decision maker
of last resort—the RC Regulation seems to grant the licensee discretion to choose from whom to get
agreement in writing to the use of a restraint. e licensee may get agreement from:
• e person in care;
• e parent or representative of the person in care; or
• e relative who is closest to and actively involved in the life of the person in care.
574
ere is no requirement in the legislation to rst determine the capacity of the person in care to make
a decision about whether restraints are used, nor is there a test for capacity to make restraint decisions
embedded in the legislation. Neither the RC Regulation nor the CCAL Act contains a presumption
of capacity. As such, on a strict reading of section 74(1)(b), the licensee may get agreement to use the
restraint from a relative regardless of whether or not the adult in care has capacity.
e provision does not identify a role for the PGT as either decision maker of last resort for restraints,
or to resolve disputes over who is entitled to agree to the use of the restraint. As a result, while the
PGT may make decisions regarding restraint if appointed by a court as committee,
575
or as health care
decision maker of last resort where the restraint use relates to the provision of health care,
576
the oce
does not otherwise have authority to consent to restraint use.
Emergency Use of a Restraint
In the absence of agreement, restraints may only be used “if the restraint is necessary to protect the
person in care or others from imminent serious physical harm”: section 74(1)(a).
577
Such use is referred
to in the Schedule D of the RC Regulation as an “emergency restraint”.
578
e distinction between
the use of restraints in emergency circumstances versus by agreement reinforces the notion that use
of various restraints may be anticipated and documented in the person’s care plan, in advance. While
many BC facilities have adopted a least restraint policy to inform practice and promote consistency,
legislation remains fairly broad and permissive.
In the case of an emergency use of a restraint, the licensee has obligations following the emergency to:
(a) provide, in a manner appropriate to the person’s skills and abilities, information and advice in
respect of the use of the restraint to
(i) the person in care who was restrained,
(ii) each person who witnessed the use of the restraint, and
(iii) each employee involved in the use of the restraint, and
(b) document in the care plan of the person in care the information and advice given.
579
4 | Consent and Chemical Restraint 119
e section is silent regarding communication with the substitute decision maker for health care.
Episodic use of restraints to address recurring situations that involve a safety risk to sta or other
residents does not seems to require either communication with, or agreement by, a substitute decision
maker. However, elsewhere in the RC Regulation emergency restraint is included in a class of report-
able incidents,
580
and the occurrence of a reportable incident triggers a duty to notify “the parent or
representative, or contact person, of the person in care.”
581
e section requires the licensee provide the person who was restrained with “information and advice”
in respect of use. It is not clear what kind of advice is required.
Ongoing Use of a Restraint
e language of the RC Regulation is somewhat unclear in terms of the consent or agreement require-
ments regarding ongoing, non-emergency use. e RC Regulation indicates that ongoing use of
restraints can be addressed in a resident’s care plan. Section 75 of the regulation states that:
(3) If a restraint is used under section 74 (1) (b) and the use of the restraint continues either
continuously or intermittently for more than 24 hours, a licensee must
(a) reassess the need for the restraint on the earlier of
(i) the time specied in the care plan of the person in care, and
(ii) the time specied by the persons who agreed, and
(b) as part of the reassessment, consult, to the extent reasonably practical, with the persons
who agreed to the use of the restraint.
582
e section suggests a requirement to consult with the substitute decision maker for health care in the
event of ongoing use; however, the language of “to the extent reasonably possible” is vague. ere is no
reference in this section to either “agreement” or “consent”.
Elsewhere, as noted above, the RC Regulation indicates that non-emergency use requires agreement in
writing by “the person in care, the parent or representative of the person in care or the relative who is
closest to and actively involved in the life of the person in care”, which, subject to the ambiguities noted
above, likely means the person in care or a substitute decision maker for health care, if any. Regardless
of any uncertainty regarding the dierence between agreement and consent, discussed below, “agree-
ment” sets a higher bar than a requirement to “consult”.
Where the use of a restraint has been agreed to under s. 74(1)(b) (in a care plan), there are additional
conditions on the use of the restraint which imply that restraint use should be a last resort alternative.
Section 73(2) states:
(a) all alternatives to the use of the restraint must have been considered and either implemented
or rejected;
(b) the employees administering the restraint must
(i) have received training in alternatives to the use of restraints and determining when
alternatives are most appropriate, and the use and monitoring of restraints, and
120 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
(ii) follow any instructions in the care plan of the person in care respecting the use
of restraints;
(c) the use of the restraint, its type and the duration for which it is used must be documented in the
care plan of the person in care.
583
e RC Regulation clearly states that restraint use that starts out as an emergency intervention, but
continues for more than 24 hours, requires agreement from either the person being restrained, or “the
parent or representative” or “relative who is closest to and actively involved in the life of the person
in care.”
584
Where such an agreement is made, the following information must be included in the
person’s care plan:
(a) the type or nature of the restraint used;
(b) the reason for the use of the restraint;
(c) the alternatives that were considered to the use of the restraint, and which, if any, were
implemented or rejected;
(d) the duration of the restraint and the monitoring of the person in care during the restraint;
(e) the result of any reassessment of the use of the restraint;
(f) employee compliance with the requirements of Division 5[Use of Restraints]of Part 5.
585
Section 75 of the RC Regulation sets out the requirement for continued reassessment of the need for
the restraint, the time periods for reassessment, and matters of consent and consultation for continued
use of the restraint. e Regulation requires that “a licensee must reassess the need for the restraint
at least once within 24 hours after the rst use of the restraint.”
586
e reassessment requirement is
limited to the rst use.
e rationale for requiring agreement for the rst use of a restraint for a specied period of time, but
not for immediate subsequent uses of a restraint once that initially agreed-to period is over, is not
apparent. In a similar vein, the RC Regulation does not provide for a mechanism for revoking agree-
ment to the use of a restraint.
The Meaning of “Consent” versus “Agreement”
e RC Regulation uses the term “agreement” instead of “consent” when addressing decision making
regarding restraints. It is not clear why the term “agreement” is used. Our review of the context in
which the two terms are used suggests they are essentially equivalent terms.
Black’s Law Dictionary oers the following distinct denitions of the terms “agreement” and “consent”:
Consent (n): “A voluntary yielding to what another proposes or desires; agreement,
approval, or permission regarding some act or purpose, esp. given voluntarily by a compe-
tent person; legally eective assent”
587
4 | Consent and Chemical Restraint 121
Agreement: “A mutual understanding between two or more persons about their relative
rights and duties regarding past or future performances; a manifestation of mutual assent
by two or more persons”
588
However, the Supreme Court of Canada notes that rules of statutory interpretation direct us to explore
meaning with an eye to overall context:
… the modern rule of statutory interpretation requires that “the words of an Act are to
be read in their entire context and in their grammatical and ordinary sense harmoniously
with the scheme of the Act, the object of the Act, and the intention of Parliament” (E.A.
Driedger,Construction of Statutes(2nd ed. 1983), at p. 87.
589
We have been unable to nd an expressly stated intention of government in developing these restraint
regulations. e provisions require agreement “in writing”. It is possible that requirement for agree-
ment in writing was intended to set a higher bar than consent, which “may be expressed orally or in
writing or may be inferred from conduct.”
590
In this report we treat the notions of consent and agree-
ment as equivalent terms for the purposes of discussing health care and use of restraints. However, for
some decision makers the powers to agree or to consent dier. For example, as noted earlier, the PGT
can consent to chemical restrains which are a form of health care as TSDM, and agree to restraints
more broadly where they are Committee of the Person, that is to say, where they have decision making
authority that includes both health care and personal care.
Policies and Documentation
A licensee must have written policies and procedures regarding the use of restraints in an emergency.
ere is no such requirement for the non-emergency use of a restraint.
591
In addition, a licensee must
keep a record of all reportable incidents.
592
As noted earlier, the use of a restraint in an emergency situ-
ation is considered a “reportable incident” under Schedule D of the RC Regulation, and as such must
be reported to a medical health ocer.
593
A medical health ocer has responsibility for the granting of
licenses to community care facilities, while the director of licensing has the power to inspect facilities
for compliance with licensing conditions, audit facility operations, and investigate particular matters,
including reportable incidents.
594
Special Care Units as a Form of Restraint
Some long-term care facilities have units which are specically tailored to care for adults with advanced
dementia, and which are typically secure units intended to prevent the adult from leaving the area
unattended. According to the denition of “restraint” in the RC Regulation, which expressly includes
“accommodating the person in care in a secure unit,”
595
a person living in a special care unit of a long-
term care facility is subject to ongoing restraint. e restraint regulations do not deal with restraint by
way of a secure unit in a unique manner, and as a result, the provisions regarding agreement to the use
of restraint, as well as reassessment and other requirements, would apply.
As discussed above, a person other than the substitute decision maker for health care may agree to the
use of a restraint in some instances. e proposed substitute consent scheme for care facility admission
122 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
mirrors the provisions of the HCCA,
596
and diers from the agreement provisions of the RC Regulation
for restraint use. As a result, it is possible that the person who has authority to consent to admission
to a care facility may be dierent from the person who has authority to agree or not agree to have the
person housed in a special care unit of the facility.
Summary of the Regulation of Restraint in BC
Overall, the provisions indicate that use of restraint:
• Should be a last resort option;
• Must be reassessed within 24 hours—following the rst instance of use;
• Is permitted without agreement in urgent situations involving a safety risk;
• Must be documented, including type of restraint and duration of use;
• Must be agreed to in writing, where agreement is required under the RC Regulation; and
• Can be agreed to in advance via the plan of care.
In terms of communication regarding use, the RC Regulation requires:
• Following emergency use, the person who was restrained must be provided with
“information and advice”;
• In the case of ongoing use, at minimum, some kind of communication with the person
entitled to agree to the use of restraint; and
• Either “consultation” with the person who agreed to the use, or agreement in writing
by the person in care or the person entitled to make the decision (likely some kind of
substitute health care decision maker)—or perhaps both.
In terms of who may agree to the use of a restraint, the RC Regulation:
• Does not require a capacity determination prior to getting agreement from a substitute
decision maker;
• Appears to grant discretion to the licensee to choose from whom to get agreement, with
respect to restraints that are not also a form of health care; and
• Uses the term “representative” in the context of determining who has authority to agree to
the use of a restraint.
4.2 COMPARATIVE RESEARCH ON RESTRAINT LAW AND POLICY
Our review identied some concerns with the RC Regulation provisions regarding use of restraints in
long-term care, which we discuss in Chapter 7. In this chapter we canvass approaches taken in other
jurisdictions, particularly within Canada, to see if they oer alternatives worth consideration.
4 | Consent and Chemical Restraint 123
Health care consent legislation in Ontario, PEI and the Yukon expressly provides
that the consent legislation is subject to the common law duty to restrain when
immediate action is necessary to prevent serious bodily harm to the person or to
others.
597
Ontario’s Long Term Care Homes Act also expressly preserves the common
law duty alongside detailed legislative requirements.
598
ese provisions make it clear
that consent is not required in such circumstances, but do not elaborate on what the
common law duty entails. All jurisdictions are bound by the common law duty to
restrain, subject to any relevant enactments.
ere is great variability among Canadian jurisdictions in the legislative coverage and
treatment of restraints in health care settings. In the mental health context, Kaiser has
described legislation as failing to adequately protect patients. He states that even in
jurisdictions which have enacted legislation on the topic, there still exists “excessive
discretionary power and no mandatory prevention, last resort or other protective
doctrines.”
599
4.2.1 Restraint in a Mental Health Setting
e majority of jurisdictions’ mental health statutes (Ontario, Alberta, Manitoba, PEI,
Yukon, Nunavut, Northwest Territories)
600
provide authority to restrain a patient in
the context of an involuntary admission to a psychiatric facility, and describe restraint
in a consistent manner similar to Manitoba’s denition below:
to place under control when necessary to prevent harm to the patient or
to another person by the minimal use of such force, mechanical means
or medication as is reasonable having regard to the patient’s physical
and mental condition.
601
It is common for Canadian jurisdictions to require the documentation of any use of
a restraint in a mental health facility.
Quebec places a “minimal use” restriction in its legislation, which also applies in long-
term care, as well as a recording requirement as follows:
118.1.Force, isolation, mechanical means or chemicals may not be used to place a
person under control in an installation maintained by an institution except to prevent
the person from inicting harm upon himself or others. e use of such means must
be minimal and resorted to only exceptionally, and must be appropriate having regard
to the person’s physical and mental state.
Any measure referred to in the rst paragraph applied in respect of a person must be
noted in detail in the person’s record. In particular, a description of the means used,
the time during which they were used and a description of the behaviour which gave
rise to the application or continued application of the measure must be recorded.
If they’re admitted under
extended leave, you don’t
need to get consent from the
Representative or whoever.
But I always did. Because
it’s good practice to involve
the family, or involve the
friend… So, I would consider
it bad practice not to.
– Physician
124 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Every institution must adopt a procedure for the application of such measures that
isconsistent with ministerial orientations,make the procedure known to the users of the
institution and evaluate the application of such measures annually.
602
New Brunswick’s mental health statute authorizes the use of restraints in psychiatric facilities, but does
not limit their use in any way.
603
e Act states that an “examination certicate…is sucient authority
... for the attending psychiatrist, without consent ... to administer such restraint as, in the attending
psychiatrist’s opinion, is necessary.”
604
In BC, restraints are not referenced in the Mental Health Act,
and the Director is given wide latitude with respect to the use of restraints, with patients having been
“deemed to consent” to treatment; when detained, patients are “subject to the direction and discipline
of the director.”
605
Nova Scotia, Saskatchewan and Newfoundland do not address the issue of the use of restraints in a
psychiatric context.
606
4.2.2 Restraint in a Long-Term Care
Issues of consent and restraint are equally contentious in long-term care. In this context, restraint regu-
lation again varies considerably between Canadian jurisdictions. Regulation of restraint in care facili-
ties commonly occurs through legislated minimum standards. In the select provinces reviewed in more
detail below, it is common for such minimum standards to require facilities to have a restraint policy.
However, the level of detail required varies considerably, as does the required substantive content of
the policies. A requirement in these standards that residents must consent to the use of a restraint (in
non-emergency situations) is the exception, rather than the rule.
Long-term care standards are generally not put in the regulation or Act so that they can be more
easily reviewed and updated on a regular basis. A regulation usually provides the government with
the authority to produce standards, incorporates the government published standards by reference,
and makes compliance with them mandatory.
607
Compliance with such standards is always a licensing
requirement.
Below we review Ontario, Quebec, Alberta, Nova Scotia, Saskatchewan, and Prince Edward Island
in order to provide a broad cross-section of the types of restraint regulation in the long-term care in
Canada. Ontario is reviewed in greater detail because it contains the most comprehensive require-
ments, and similar to BC, the jurisdiction has opted to address restraints in its legislation governing
long-term care. We also consider the law in the states of Washington and California.
Ontario
Ontario’s Long Term Care Homes Act (“LTCH Act”) contains legislative provisions with respect to the
use of restraints. While the Act bears some similarities to BC’s RC Regulation (described in detail
above), it is more comprehensive in some respects, particularly with respect to recording obligations.
e Act primarily relies on the common law duty to restrain. Noteworthy is the requirement in
Ontario’s LTCH Act that licensees must have a written policy to minimize the restraining of residents,
4 | Consent and Chemical Restraint 125
as well as a requirement that licensees enforce the policy.
608
e Regulations set out a comprehensive
list detailing what this policy must cover, but do not provide any substantive requirements.
609
e
LTCH Act provides:
30. (1)Every licensee of a long-term care home shall ensure that no resident of the home is:
1. Restrained, in any way, for the convenience of the licensee or sta.
2. Restrained, in any way, as a disciplinary measure.
3. Restrained by the use of a physical device, other than in accordance with section 31 or
under the common law duty described in section 36.
4. Restrained by the administration of a drug to control the resident, other than under the
common law duty described in section 36.
5. Restrained, by the use of barriers, locks or other devices or controls, from leaving a room
or any part of a home, including the grounds of the home, or entering parts of the home
generally accessible to other residents, other than in accordance with section 32 or under the
common law duty described in section 36.”
No denition of restraint is provided. However, the law contains the following guidance on what is
not considered a restraint:
• “e use of a personal assistance services device…to assist a resident with a routine activity
of living.”
610
• “e administration of a drug to a resident as a treatment set out in the resident’s plan of
care.” Treatment is not dened in the Act.
611
• “e use of barriers, locks or other devices or controls at entrances and exits to the home or
the grounds of the home… unless the resident is prevented from leaving.”
612
• “e use of barriers, locks or other devices or controls at stairways as a safety measure.”
613
Under the LTCH, the general rule is that a restraint can only be used in accordance with the common
law duty to “restrain or conne a person when immediate action is necessary to prevent serious bodily
harm to the person or to others”.
614
ere are some exceptions to this general rule in the case of physical
restraints, which can be used if their use has been agreed to in the resident’s plan of care in accordance
with section 31 of the Act.
615
Section 31 of the Act has a number of requirements, including that “the
restraining of the resident has been consented to by the resident or, if the resident is incapable, a substi-
tute decision-maker of the resident with authority to give that consent.”
616
In Ontario, the LTCH Act requires that any use of a restraint must have been ordered by a physician
or a registered nurse.
617
However, the LTCH Act also preserves the common law duty to restrain
when immediate action is necessary to prevent serious bodily harm to the person or to others, which
presumably permits restraint without a health care provider’s order given the emergency nature of the
situation.
618
In BC, agreement of a physician or nurse to the use of the restraint must only be obtained
in non-emergency circumstances.
619
126 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Unlike BC’s RC Regulation, which set out the circumstances in which restraint may be used, the
Ontario legislation instead relies on the existence of the common law duty, without specifying the
parameters of the common law duty. While BC refers to an “emergency” predicating the need for the
restraint, Ontario instead focusses on a situation requiring the prevention of imminent harm. Both
require a resident (or substitute decision maker) to consent to the use of a restraint when the restraint
is used as part of their care plan. However, in Ontario, a chemical restraint cannot be used as part of a
care plan; chemical restraints are limited to use in accordance with the common law, that is to say, when
they are necessary to protect the person or others from imminent harm.
In comparison with the BC requirement to document type and duration of use, the LTCH Act and
Regulations places signicant record keeping obligations on licensees with respect to instances of the
use of a restraint. For chemical restraints, the Regulations require, at minimum, documentation of
the following:
1. Circumstances precipitating the administration of the drug.
2. Who made the order, what drug was administered, the dosage given, by what means the drug was
administered, the time or times when the drug was administered and who administered the drug.
3. e resident’s response to the drug.
4. All assessments, reassessments and monitoring of the resident.
5. Discussions with the resident or, where the resident is incapable, the resident’s substitute
decision-maker, following the administration of the drug to explain the reasons for the use
of the drug.
620
Similar documentation is required for the use of a physical restraint, including documentation of
consent obtained.
621
Also, Ontario has enacted the Patient Restraint Minimization Act, 2001 which advocates for the mini-
mization of restraint in patient care.
622
e Act applies to public and private hospitals, but not psychi-
atric facilities, where mental health legislation continues to govern, or to long-term care facilities,
where the LTCH Act governs. e Patient Restraint Minimization Act attempts to enhance the law of
patient restraint. However, it leaves much to be done by way of regulation, and regulations have not yet
been legislated. Without the details and the signicant clarication that associated regulations would
provide, the Act remains decient.
623
e Patient Restraint Minimization Act, states that a hospital or facility shall not restrain a patient
except under two sets of circumstances, entitled “Enhancement of Freedom” and “Prevention of
Serious Bodily Harm.”
624
Both circumstances require that “the restraint…is necessary to prevent seri-
ous bodily harm to the patient or another person.” e “Enhancement of Freedom” circumstance also
requires that the restraint give the person greater freedom and enjoyment of life, and requires the
consent of the person or the person’s substitute decision maker.
625
e second “Prevention of Harm”
circumstance does not require consent or enhanced freedom, but simply that the regulatory criteria for
the use of the restraint be met.
626
is circumstance is expressly stated to be unaected by the common
law duty to restrain or conne a person when immediate action is necessary to prevent serious bodily
harm to the person or to others.
627
It is unclear whether there is any dierence between this legislated
4 | Consent and Chemical Restraint 127
authority to restrain, and the common law duty to restrain. It is also unclear when the hospital may
rely on the rst set of circumstances, as opposed to the second.
628
Summary of Key Dierences from BC
Key dierences from BC Law:
• Every long-term care home must have a policy regarding the use of restraint which applies
to non-emergency use, as opposed to only emergency use, which includes how use will be
evaluated to ensure minimization and compliance with the law;
• Use of a chemical restraint cannot form part of a care plan; and
• e regulation sets out specic additional documentation requirements when chemical
restraints are used
Quebec
Quebec has imbedded some requirements governing restraint into its Civil Code, section 118.1, which
apply to both mental health and long-term care, and are discussed above in subsection 4.2.1. Although
we have been unable to nd a copy of Ministerial Orientations regarding section 118, commentary on
them suggests that the decision to use controls must be made with informed consent of the person or
their family/guardian.
629
Summary of Key Dierence from BC
Key dierences from BC Law:
• e Civil Code uses the language of “harm upon himself or others” instead of
“emergency”; and
• Must document time during which restraints were used, and the behaviour which gave rise
to the application or continued application of restraint.
Alberta
In Alberta, minimum requirements in the provision of health care services in nursing homes are
contained in the Continuing Care Health Service Standards (“CCHSS” or the “Standards”) published
by the Ministry of Health.
630
ese Standards are made pursuant to the Nursing Homes General
Regulation
631
under the Nursing Homes Act,
632
and pursuant to a Ministerial Directive under the
Regional Health Authorities Act.
633
ey address the health and personal care services provided by
nurses, therapists, health care aides, and other health care professionals in the nursing home setting.
634
e Standards apply to “Operators,” dened as “[a] legal entity that receives public funding for the
provision of Health Care directly to Clients.”
635
ese Standards include standards with respect to the
use of restraints.
Chapter 16 of the CCHSS requires operators of care facilities to maintain and implement policies
with respect to the use of restraints. Restraint is dened as “[a]ny measure that is pharmacological,
128 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
environmental, mechanical or physical that is used with the intention of protecting a Client from self-
harm or preventing harm to another person.”
636
e Standards make it clear that administration of an
anti-psychotic medication can be considered the use of a restraint, and goes so far as to require specic
measures in those circumstances:
(g) where an antipsychotic medication is used as a pharmacological Restraint:
(i) a Medication Review by a Physician and the Interdisciplinary Team will occur at a
minimum of once a month to ensure the appropriateness of the medications prescribed; and
(ii) where the antipsychotic medication is no longer required, a Physician or pharmacist
will document instructions regarding the process for gradual dose reduction and
discontinuation.
637
However, the Standards do not clarify when medication would be considered a restraint.
With respect to the use of restraint, the Standards require nursing homes to include in their
policies that:
where a Client has been assessed as exhibiting a behaviour or a Responsive Behaviour that
puts the Client or others at risk of immediate harm, the Regulated Health Care Provider
may initiate the process to utilize a Restraint
A Responsive Behaviour is dened as:
A signicant subset of the behavioural and psychological symptoms of dementia (BPSD)
that are thought to be an expression of: a) an unmet need; b) a response to a stimulus in a
Client’s environment; c) a psychological need; or d) a response to the approach of Health
Care Providers or other Clients.
638
ere is no requirement that the resident or a substitute decision maker provide consent before
anti-psychotics can be administered as a restraint. e Regulated Health Care Provider (who is a
member of a regulated health profession under the Health Professions Act)
639
has authority to initi-
ate the restraint utilization process. Although any Regulated Health Care Provider can initiate the
process, standards with respect to documentation of the use of restraints indicate that documentation
must include “a Physician’s order, within 72 hours of initiation of the Restraint, authorizing the use
of the Restraint.” is requirement claries that a physician must authorize the use of a restraint;
however, it is unclear on a reading of the CCHSS whether a physician’s authorization needs to be prior
to the commencement of the use of the restraint, or within 72 hours of its use.
e meaning of “immediate harm” is very broad. e requirement in the Standards that a medication
review by a physician and the interdisciplinary team “occur at a minimum of once a month to ensure
the appropriateness of the medications prescribed,”
640
indicates that permitted use goes beyond the
common law understanding of an emergency. is standard supports the longer term use of anti-psy-
chotics to manage behaviour.
e Standards also specify a number of substantive requirements which must be included in the nurs-
ing home’s policies, including:
4 | Consent and Chemical Restraint 129
• supportive interventions must be considered prior to the utilization of a Restraint;
• if supportive interventions are considered and deemed ineective or inappropriate in the
circumstance, the least restrictive Restraint may be utilized;
• information on the use of Restraints must be provided to the Client or the Client’s legal
representative, if applicable, when possible prior to its use and at any Interdisciplinary
Team conferences that occur during the time the Restraint is in use;
• the method and frequency for monitoring the Client when the Restraint is in use; and
• criteria for the discontinuation of a Restraint.
641
e Standards also require detailed documentation of the use of any restraint in a resident’s chart and
care plan, and the nursing home’s policies must include the following in this regard:
(a) the behaviour that put the Client or others at risk of harm;
(b) the supportive interventions that have been considered and trialed;
(c) indications for the initial use of the Restraint;
(d) a Physician’s order, within 72 hours of initiation of the Restraint, authorizing the use of
the Restraint;
(e) he method and frequency for monitoring the Client when the Restraint is in use; and
(f) assessment of the Client while the Restraint is being used and review of the ongoing need for
the Restraint.
642
Summary of Key Dierences from BC
In Alberta, requirements are addressed in a standard published by the government that applies to all
health care professionals and care home operators that receive public funding.
e Standards:
• Clarify that administration of an anti-psychotic medication can be considered the use of a
restraint; and
• Impose detailed documentation requirements where restrains are used.
As the Standards do not require consent prior to administration of a chemical restraint, and appear
to expand the circumstances under which use of a chemical restraint will be appropriate beyond the
scope of the common law, they do not provide a model BC ought to consider in terms of enhanc-
ing regulation.
Nova Scotia
Minimum standards for licensed nursing homes and residential care facilities in Nova Scotia are
contained in the Department of Health and Wellness’ document entitled “e Long Term Care
Program Requirements: Nursing Homes and Residential Care Facilities,” made in accordance with
the Homes for Special Care Act and Regulations.
643
130 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Restraint is dened in the Program Requirements as:
Anything that is intentionally used to limit the movement or behaviour of a resident
and over which the resident has no control. Restraints may be physical, environmental
or chemical. A resident is restrained if he or she cannot remove a physical device, leave a
specic area, or refuse a chemical restraint.
644
However, restraints are not regulated beyond a requirement that nursing homes and long-term care
facilities develop and follow a least restraint policy.
645
Summary of Key Dierence from BC
Key dierence from BC law:
• Requires nursing homes and long-term care facilities to develop and follow a least
restraint policy.
Saskatchewan
In Saskatchewan, all special-care homes and other designated facilities that provide publicly funded
long-term care must operate in accordance with the minimum standards set out in the Program
Guidelines for Special-care Homes (the “Program Guidelines”).
646
e Program Guidelines include a
section intended to “provide direction for the use of restraints in the special-care home environment”.
Restraint is not dened in the Program Guidelines. e section requires special-care homes to main-
tain a policy on restraints which accords with accepted professional standards, and which includes a
number of minimum requirements.
e Program Guidelines distinguish between “commitments” to be made by a special-care home, and
“requirements.” e Program Guidelines require “a commitment that restraints are used as a last resort
when the resident’s behaviour or medical condition could interfere in the residents’ health and safety
or the health and safety of others”, and “a commitment that strategies designed to reduce the use of
restraints will be implemented.”
647
It is unclear how binding such commitments are. On the other
hand, it is a requirement that prior to and during restraint usage there is evidence of the following:
i. A less intrusive intervention has been implemented and demonstrated to be ineective;
ii. Initial and on-going comprehensive assessments of the resident;
iii. Other professionals have been consulted that specialize in the care and treatment of dicult to
manage behaviours, this may include a continuing care consultant;
iv. A written order for a restraint has been prescribed by the attending physician and/or registered
nurse (nurse practitioner) and reviewed as indicated through the resident assessment
process; and
v. e responsible person (person legally authorized to act on behalf of the resident) for the
resident has been consulted regarding the use of restraints.
648
4 | Consent and Chemical Restraint 131
ese minimum standards indicate that a restraint must be ordered by the attending physician or
nurse practitioner, with no distinction made between dierent types of restraint. While the “respon-
sible person” for the resident must be consulted regarding the use of the restraint, there is no require-
ment that the resident’s consent, or the consent of the “responsible person”, be obtained. e Program
Guidelines do not distinguish between emergency and non-emergency use of restraints; however, the
common law duty to restrain will apply.
Summary of Key Dierences from BC
Key dierences from BC law:
• Detailed documentation requirements exist.
Prince Edward Island
The PEI Department of Health and Wellness publishes minimum standards for licensing of
Community Care Facilities and nursing homes in accordance the Community Care Facilities and
Nursing Homes Act and Regulations.
649
Separate standards are published for Community Care
Facilities,
650
which provide light care with no nursing supervision (“CCF Standards”) and nursing
homes,
651
which provide a higher level of care with nursing supervision (“Nursing Home Standards”).
Neither standard denes “restraint.”
Use of restraints is prohibited in Community Care Facilities. In nursing homes, use is permitted only
where the nursing home implements a “least restraint” policy:
4.4.26 e facility has a least restraint policy, supported by written procedures, directing
restraint use when the risk of resident self-injury or to others is signicant. Restraints are
used only as a last resort and are a temporary measure when all other means to prevent or
reduce the risk prove unsuccessful.
652
e language of “signicant risk” purports to expand on the common law duty to restrain in emergency
situations which involve an immediate or imminent risk of harm. ere is nothing in these standards
which require the risk to be imminent before restraint may be used. However, the Nursing Homes
Standards require the nursing home’s policy to ensure that “[p]harmaceutical and/or least restraint are
initiated only when other measures are ineective.”
653
is process requires sta to observe, assess and
document triggers for altered behaviour over time, and to employ social and environmental interven-
tions to reduce distress before considering use of a restraint.
654
Legislation, regulations, and Nursing Home Standards are all silent on consent. PEI’s health care
consent legislation, as outlined above, expressly provides that health care consent law is subject to the
common law duty to restrain when immediate action is necessary to prevent serious bodily harm to
the person or to others.
655
e Act does not touch on the question of consent to the use of restraints in
a non-emergency situation.
132 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Summary of Key Dierences from BC
Key dierence from BC:
• Use of restraint is permitted in nursing homes only where the home implements a least
restraint policy;
• Restraint may be used in a nursing home if there is a signicant risk of injury to self and
others; and .
• Law is silent with respect to consent to restraints in the non-emergency context.
Washington
e law governing informed consent in long-term care facilities (called nursing homes in Washington),
including the regulation of restraints, is the Washington Administrative Code, Chapter 388-97 (“WAC”).
e WAC provides that a resident has the right to be free from physical and chemical restraints which
are imposed for purposes of “discipline or convenience, and not required to treat the resident’s medical
symptoms”
656
or have the eect of “preventing or limiting independent mobility or activity.”
657
As with BC, the denition of “health care provider” encompasses a wide range of health care profes-
sionals, such as doctors, nurses, dentists, psychologists, physical therapists and pharmacists.
658
However,
the denition also includes employees or agents of the health care professionals listed, facilities, and
institutions which employ any of the health care professionals listed, such as hospitals, clinics and
nursing homes, as well as those facilities’ ocers, directors employees or agents, so long as they are
working within the scope of their employment.
659
is denition aims to make these categories of
health care providers potentially liable for an action alleging a failure to obtain informed consent to
health care.
660
ere is signicant discussion of patient’s rights in the regulations. e WAC places an obligation on
nursing homes to ensure the informed consent process is followed.
661
Specically, nursing homes are
obliged to inform the resident of the right to consent to or refuse care at the time of resident assess-
ment and care plan development, and again with any condition changes.
662
Further, the nursing home
must inform the resident at the time initial care plan decisions are made, and periodically thereafter,
of the right to change their minds about an earlier consent or refusal decision.
663
As a condition of licensing, Department of Health regulations also require hospitals in Washington
to adopt and implement policies which dene patients’ rights to be involved in all aspects of their
care, including the right to refuse treatment and to be informed.
664
is practice has been described
as a “policing role in the informed consent process.”
665
Further, hospital accreditation standards in
Washington require that “[t]he hospital honors the patient’s right to give or withhold informed
consent.”
666
Hospitals must maintain detailed policies on informed consent, and consent must be
obtained in accordance with these policies.
667
In Washington state, the resident rights (as set out in the
Washington Administrative Code) which must be provided orally and in writing to the resident, clearly
set out the resident’s right to be fully informed, and to consent or refuse treatment.
668
4 | Consent and Chemical Restraint 133
Federal legislation requires, as a conditions of participation in Medicare and Medicaid programs, that
“patient’s rights include being informed of his or her health status, being involved in care planning
and treatment, and being able to request or refuse treatment”.
669
Hospitals must use informed consent
processes to ensure the information necessary for patients to make informed decisions is provided to
them and/or their representatives.
670
Washington State has been innovative in the development of the formal concept of “shared decision
making,” with the passing of shared decision making legislation in 2007 as part of a pilot project.
671
Currently, the law in Washington allows for the shared decision making process to culminate in a
signed “acknowledgment of shared decision making,” as an alternative means of meeting the health
care provider’s informed consent requirements. “Shared decision making” is essentially a discussion
between the health care provider and the patient about the proposed treatment, which includes the
use of a “patient decision aid”. A “patient decision aid” is a written, audiovisual, or online tool that
provides balanced information about the patient’s condition and proposed treatment options, benets
and harms. Washington State’s Health Authority has statutory authority to certify patient decision
aids. e certication process is in the early stages, and is ongoing.
672
Summary of Key Dierences from BC
Key dierences from BC law:
• Consent to treatment can be provided by way of an approach called “shared
decision making”;
• e denition of “health care provider” includes employees or agents of health care
professionals, facilities, and institutions which employ any of the health care professionals;
• Nursing homes must ensure the informed consent process is followed;
• Hospitals and nursing homes must implement policies delineating patients’ rights to
be involved in all aspects of care, including the right to refuse treatment and provide
informed consent; and
• Nursing homes must inform the resident of the right to consent to, or refuse care, at the
time of care plan development, and again with any condition changes.
California
California law generally relies on the common law of informed consent, requiring health professionals
to obtain consent of the patient, or the patient’s legal representative, prior to providing treatment, or
risk a charge of battery, negligence or professional misconduct.
673
“Informed consent” is dened in the
California Code of Regulations (“CCR”) as “the voluntary agreement of a patient or a representative of
an incapacitated patient to accept a treatment or procedure after receiving information in accordance
with [particular sections of the regulations].”
674
e CCR place an obligation on facility sta to verify that the patient’s health record contains
documentation that the patient has given informed consent to the treatment, prior to administer-
ing a psychotherapeutic drug (or physical restraint or other device).
675
As discussed with respect to
134 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Washington, hospitals must ensure that proper consent documentation is included in a patient’s medi-
cal records where written consent is required.
676
Patient rights specic to skilled nursing facilities in California (essentially health facilities which
provide 24-hour inpatient care to patients who primarily require skilled nursing care on an extended
basis, and which include nursing homes),
677
are also set out in the CCR. ere is an express statutory
obligation to obtain a resident’s informed consent in the context of skilled nursing facilities prescribing
anti-psychotics to residents who have decision making capacity.
678
e CCR refers specically to a patient’s right to be informed of material information relevant to the
administration of psychotherapeutic drugs or physical restraints (or other device):
(5) To receive all information that is material to an individual patient’s decision concern-
ing whether to accept or refuse any proposed treatment or procedure. e disclosure of
material information for administration of psychotherapeutic drugs or physical restraints
or the prolonged use of a device that may lead to the inability to regain use of a normal
bodily function shall include the disclosure of information listed in Section 72528(b).
679
Skilled nursing facilities must have written policies regarding these patient rights, and such policies
must be made available to the patient, and any representative of the patient, or the public.
680
With
respect to informed consent, patient rights specic to skilled nursing facilities include general rights
to be informed of one’s health status, and to participate in care planning as well as a very clear right
to consent or refuse treatment, with a corollary right to be given all information material to making a
decision about treatment.
681
e information that must be disclosed includes the expected information
around reasons for treatment, nature of treatment, duration, side eects, and alternatives. e law also
includes a requirement that the health care professional must tell the patient “that the patient has the
right to accept or refuse the proposed treatment, and if he or she consents, has the right to revoke his
or her consent for any reason at any time.”
682
Summary of Key Dierences from BC
In California a number of legislative provisions exist specically related to anti-psychotic use, includ-
ing the right of a resident with capacity to provide informed consent to use.
US Federal legislation
US federal legislation places an obligation on health facilities to inform people of their health care
consent rights. e Federal US Patient Self-Determination Act places an obligation on hospitals, skilled
nursing facilities, home health agencies, and hospice programs which receive Medicare or Medicaid
funding to inform people of their rights under State law to make their own health care decisions,
including the right to accept or refuse medical treatment.
683
While informed consent rights are codi-
ed in state law, this federal legislation has played an important role in raising awareness of consent
rights nationally.
684
4 | Consent and Chemical Restraint 135
4.3 WHEN IS MEDICATION A FORM OF RESTRAINT?
e question of whether, and under what circumstances, the use of an anti-psychotic
or other form of medication can be a form of restraint, and as such be subject to
restraint regulation in BC, is of critical importance in the context of consent law. As
discussed above the RC Regulation essentially creates an alternate consent scheme for
restraints. In this Part 3 we explore the meaning of a chemical restraint. We review
domestic and international sources.
4.3.1 Denitions of Chemical Restraint—Health Care Perspective
Most generally, chemical restraint refers to a form of medical restraint in which a
medication is used to restrict the freedom or movement of a patient, or in some
cases used to sedate a patient. H Archibald Kaiser provides the following fairly plain
language denition of a restraint in his work:
The common element among many conceptions of seclusion and
restraint involves extraordinary controls over the movement or
behaviour of an individual by various non-consensual means. Broadly
speaking, these involuntary interventions will prevent a person from
physically leaving an area, or will restrict normal bodily movements, or
will limit behavioural expression. Seclusion or restraint fall outside the
parameters of conventional treatment. . .
685
e College of Nurses of Ontario includes the following denition of restraints in
their Practice Standard, oering some concrete examples:
Restraints are physical, chemical or environmental measures used to
control the physical or behavioural activity of a person or a portion
of his/her body. Physical restraints limit a client’s movement. Physical
restraints include a table xed to a chair or a bed rail that cannot be
opened by the client. Environmental restraints control a client’s mobil-
ity. Examples include a secure unit or garden, seclusion or a time-out
room. Chemical restraints are any form of psychoactive medication used
not to treat illness, but to intentionally inhibit a particular behaviour
or movement.
686
e Patient Safety Institute of Canada also divides restraints into three categories –
physical, environmental and chemical. With respect to chemical restraints, it states:
In mental healthcare settings, there are instances where medications
may be used to both treat symptoms and manage behaviourial emer-
gencies. erefore, not included in the denition of chemical restraint
are psychotropic medications that are used for treatment purposes as
It’s subtle, but there’s such a
huge overlap. I don’t think
they’re mutually exclusive. So
yes, we do look at medications
as a restraint, but mostly we
focus, and our language is
focused, on using it as comfort.
And minimizing distress for the
patient. I think our language is
also equally focused on safety
with sta, other patients,
and the patient themselves.
– Geriatric psychiatrist
136 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
part of an ongoing plan of care for an established diagnosis. Medication that is prescribed
for PRN (“as needed”) and established with the person as part of his or her plan of care
is also excluded. Chemical restraint or Acute Control Medication (ACM) therefore
refers to the administration of psychotropic medication in situations where a person may
have already lost behavioural control or where there is imminent risk of loss of control in
behaviour that will lead to harm to self or others.
687
e College and Association of Registered Nurses of Alberta succinctly denes chemical restraint
as “[a]ny psychotropic drug not required for treatment, but whose use is intended to inhibit a partic-
ular behavior or movement”.
688
e Australian Medical Association considers Behavioural and
Psychological Symptoms of Dementia (discussed in Chapter 2) to be a medical condition, and as
such the use of anti-psychotic medications to alleviate these symptoms is not considered the use of a
restraint.
689
eAustralian Government’s Department of Health and Ageing denes restraint generally as “any
aversive practice, device or action that interferes with a resident’s ability to make a decision or which
restricts their free movement.”
690
ey dene chemical restraint in detail, providing examples:
Chemical restraint is the control of a resident’s behaviour through the intentional use of:
• prescribed medicines
• over the counter medicines and/or
• complementary alternative medicines.
Chemical restraint is:
• when no medically identied condition is being treated
• where the treatment is not necessary for a condition
• to over-treat a condition. Chemical restraint includes the use of medicines when:
• the behaviour to be aected by the active ingredient does not appear to have a medical cause
• part of the intended pharmacological eect of the medicine is to sedate the person
for convenience or for disciplinary purposes. Examples of pharmacological agents
used as chemical restraint are antipsychotic, antidepressant, antimanic, anxiolytic and
hypnotic drugs.
691
e South Australian Oce of the Public Advocate (“SAOPA”) also takes a position on this issue, stat-
ing that “[i]f the primary purpose of administering medication is to subdue or control the behaviour of
a person, then the use of the medication is a chemical restraint.”
692
e SAOPA’s policy on restrictive
practices in aged care settings, which applies to delegated Guardians of the SAOPA, notes the contro-
versy regarding whether anti-psychotic medication that is used to treat behavioural and psychological
symptoms of dementia is a form of restraint, coming down on the side of such interventions being
considered a chemical restraint.
A common theme to various denitions of chemical restraint set out above is that it is the use of
medicines for purposes other than therapeutic purposes that bring treatment under the umbrella of
4 | Consent and Chemical Restraint 137
chemical restraint. is interpretation of chemical restraint is conrmed by Vancouver Island Health
Authority’s Community Care Facilities Licensing Program which publishes information to guide care
facilities and denes chemical restraint as “any medication used to control behaviour beyond the point
of therapeutic benet.”
693
4.3.2 Legal Denitions of Chemical Restraint
Ontario
A denition of chemical restraint is not provided in Ontario’s LTCH Act; however, the Act does state
that: “[t]he administration of a drug to a resident as a treatment set out in the resident’s plan of care is
not a restraining of the resident.”
694
“Treatment” is not dened in the LTCH Act. However, the deni-
tion of ‘treatment’ in Ontario’s Health Care Consent Act states broadly that:
“treatment” means anything that is done for a therapeutic, preventive, palliative, diagnos-
tic, cosmetic or other health-related purpose, and includes a course of treatment, plan of
treatment or community treatment plan…
695
A decision of Ontario’s Consent and Capacity Board provides some indication that anti-psychotic
medications can be used as both a chemical restraint on behaviour on an emergency basis, with-
out consent, as well as treatment as part of a care plan on a longer-term basis, with consent. In this
case, the patient had dementia as a result of a serious acquired brain injury. e matter came before
the Consent and Capacity Board as a result of the physician’s application to determine whether the
patient’s substitute decision maker was making decisions in accordance with the HCCA. e patient
had presented a number of challenges to the physicians and sta at the hospital, including hitting,
biting, and scratching sta, and he was frequently verbally abusive. e physician wanted to treat the
patient with anti-psychotic medications. e physician had been using anti-psychotic medications on
an emergency basis as a chemical restraint to respond to some of the behaviour. e physician wanted
to use the anti-psychotic medications to treat the patient as part of his care plan, but the substitute
decision maker refused to provide consent. Ultimately, the Board found that the substitute decision
maker was not acting in the patient’s best interests, and directed her to comply with the proposed
treatment plan, which included administration of anti-psychotic medications.
696
We have been unable to nd any legal pronouncement denitively determining whether the prescrip-
tion of anti-psychotic medications to manage dementia-related behaviours is considered treatment in
Ontario as opposed to a chemical restraint. In Ontario chemical restraints cannot be used as part of a
care plan, but are limited to use in emergency situations of imminent harm. is may indicate that the
prescription of anti-psychotic medications in the longer term, or on a PRN basis, is not considered a
chemical restraint in Ontario, and instead treatment.
Alberta
Alberta’s minimum standards regulation recognizes that medication aimed at managing the following
behaviour is a chemical restraint:
138 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
A signicant subset of the behavioural and psychological symptoms of dementia (BPSD)
that are thought to be an expression of: a) an unmet need; b) a response to a stimulus in a
Client’s environment; c) a psychological need; or d) a response to the approach of Health
Care Providers or other Clients.
697
Australia
Other jurisdictions are also challenged by this issue. Australian state and territory guidelines are incon-
sistent as to whether the administration of anti-psychotic medications for non-therapeutic behavioural
management is considered a “restrictive practice” (the term used for restraints in Australia).
In New South Wales, the Guardianship Tribunal has expressed the view that the use of anti-psychotic
medications for behaviour management is not a “restrictive practice” for the purposes of consent proce-
dures under guardianship legislation. is use of medication is considered treatment, and so governed
by consent law.
698
However, at the same time the New South Wales Government Department of
Ageing, Disability and Home Care has made it clear in its policy regarding behaviour support in
the disability sector that medication prescribed to manage challenging behaviours on a PRN basis
is considered a “restricted practice”.
699
More recently there has been greater consensus on this topic
with the very recent development of national rules on restrictive practices.
700
New South Wales, for
example, which has adopted the national rules has published a guideline on authorizing the use of
restrictive practices which indicates that the use of medication on either a routine or PRN basis may
constitute chemical restraint and that chemical restraint may include psychoactive medication where
used to inuence behaviour.”
701
e South Australian guardianship tribunal has stated that “[i]f the primary purpose of administer-
ing medication is to subdue or control the behaviour of a person, then the use of the medication is a
chemical restraint.” e Tribunal also views the use of PRN medication, which is used for the primary
purpose of controlling behaviour, as a chemical restraint.
Several Western Australian administrative decisions discuss the issue of whether the prescription of
certain anti-psychotic medications is considered “medical treatment”, or a chemical restraint for the
purposes of the consent procedures set out in the guardianship legislation. In one case, the admin-
istrative decision making body at that time took a broad view of the concept of medical treatment,
stating that whether the use of a physical or chemical restraint in a nursing home is medical treatment
would depend on the reasons for its use, its purpose, and who prescribed its use.
702
In addition, the issue
should be determined on a case by case basis.
703
In that case, the Board (as it then was) determined that
an anti-psychotic medication given to a man in an aged care facility who had alcohol-related dementia
with behavioural disturbances was a chemical restraint.
704
In another later case, the Tribunal similarly
assessed anti-psychotic medication given to a man with an acquired brain injury, stating, with respect
to the medication, that:
…if the purpose is to intentionally control a person’s movement or behaviour (other than
the treatment of a diagnosed mental illness), it is my view that the intervention is properly
characterised as restraint and not treatment.
705
4 | Consent and Chemical Restraint 139
e Tribunal concluded that “[t]he eect of the intervention is to control JP’s movement and behaviour
and … it is, in my view, restraint, and should be managed and reviewed from that perspective”, and
that the man was therefore in need of a guardian to “consent to the restraint and to ensure that it is
reviewed regularly and remains the least restrictive means by which his behaviour is managed.”
706
In
another decision, the Tribunal found that the administration of the anti-psychotic olanzapine to a man
in a nursing home with degenerative dementia exhibiting aggressive behavioural tendencies was both a
restraint in the sense that it was given to “settle” his aggressive behaviour, as well as medical treatment
for his medical condition. A guardian was therefore appointed with powers to consent to restraint, as
well as consent to medical treatment.
707
My Dad would take his medication because he believed his doctor was God.
– Family caregiver
140 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
CHAPTER 5
The Institutions and People
Involved in Health Care Consent
Although the Health Care (Consent) and Care Facility (Admission) Act (HCCA) applies to the practice
of all health care professionals in BC, no matter where they practice, the regulation of type and site of
care can impact rights. e regulation and education of health care professionals and sta can impact
practice. e material included in Chapter 5 is intended to:
• Introduce the language used in the health care sector to discuss dierent types of care
relevant to the experience of people living with dementia, many of which are referenced in
our discussion of recommendations;
• Identify aspects of regulation that relate to heath care consent practice, including
professional standards and codes of ethics;
• Discuss the education of the various health care professionals, and non-regulated health
care assistants (HCAs), with respect to health care consent;
• Comment on oversight of health care professional practice with respect to consent; and
• Outline how physicians are remunerated for care in BC.
5 | The Institutions and People Involved in Health Care Consent 141
5.1 HEALTH CARE INSTITUTIONS AND THEIR GOVERNING STATUTES IN BC
e settings in which older people receive health care in BC are varied and dependent upon the needs
of the adult, the availability of space in various types of facility, and access to services in the community
within which a person resides. Resources can be scarce, and there is not always a perfect t between
site of care and care needs: for example, the BC Seniors Advocate has noted that some adults currently
residing in long-term care would be more appropriately housed in assisted living or community if
adequate home support services were available and accessed.
708
roughout this report, we refer to diverse types of care—such as home and community care, acute
care, and long-term care—some of which are regulated by their own legislation. In most instances
regulation is linked to the type of facility in which the person living with dementia resides or receives
care, rather that the type of care being provided. For example, as noted below, long-term care can be
provided in a long-term care facility or a hospital. Over the course of their dementia journey, people
may move back and forth between dierent sites of care, sometimes even within a single day, such as
where a person participates in adult day program, or presents at hospital for urgent treatment. Some
people living with dementia are committed under the Mental Health Act—the impact of involuntary
committal on rights is discussed in Chapter 3.
5.1.1 Community Care
Community care includes home care, home or community nursing care, adult day services, and other
types of health care typically provided to adults with lower level health care needs in the community,
including services colloquially referred to as “home support”. BC law describes the people entitled
to such services as “persons with a frailty or with an acute or chronic illness or disability that do not
require admission to a hospital as dened in section1 of theHospital Act.”
709
is type of care is primar-
ily governed by the Continuing Care Act
710
and the Continuing Care Programs Regulation.
711
Home care or home support services are “direct care services provided by community health
workers to clients who require personal assistance with activities of daily living, such as
mobility, nutrition, lifts and transfers, bathing and dressing, and grooming and toileting.”
712
Home or community nursing care is nursing care that is provided in either the person’s
home, a community clinic, or assisted living. e care includes non-emergency care such
as assessment, education, wound care, medication management, chronic disease manage-
ment, care management, post-surgical care, and palliative care.
713
Community nursing care
can eliminate the need for admission to long-term care.
714
Adult day services are supportive group services and community activities which enable an
older person (or a person with disabilities) to remain living in their own homes. Services
are usually provided one to two days per week, and may include personal care, health care,
including nursing and rehabilitation, as well as social and recreational activities.
142 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
5.1.2 Assisted Living
Assisted living housing is designed for adults who can live independently, but have some physical or
functional health issues. Facilities provide housing, hospitality, and personal care services,
715
as opposed
to professional health care services, such as nursing support. Assisted living is primarily governed
by the Community Care and Assisted Living Act (CCAL Act),
716
Community Care and Assisted Living
Regulation (CCAL Reg),
717
and the Assisted Living Regulation.
718
A discussion of assisted living is not central to the themes of this report because sta are not regulated
professionals obligated to obtain consent to health care. Adults residing in assisted living must have
capacity to make their own decisions.
719
5.1.3 Long-term Care
In BC long-term care is provided in dierent kinds of facilities, which are regulated by dierent stat-
utes. Health care consent law, as set out in the HCCA, applies to treatment regardless of the site of care.
Community Care Facilities
Long-term care includes “residential care for persons with chronic or progressive conditions, primar-
ily due to the aging process,”
720
provided in facilities commonly referred to as seniors’ homes, nursing
homes, or care facilities. is form of long-term care is primarily governed by the CCAL Act,
721
CCAL
Reg,
722
and the Residential Care Regulation (RC Regulation).
723
Long-term care facilities typically
provide 24-hour professional care to adults with complex health care needs who can no longer be
cared for in their own homes, or in assisted living.
724
Long-term care falls within the statutory denition of “care” under the CCAL Act if supervision is
provided to “an adult who is (i) vulnerable because of family circumstances, age, disability, illness or
frailty, and (ii) dependent on caregivers for continuing assistance or direction in the form of 3 or more
prescribed services.
725
ese services include:
(a) Regular assistance to the person with activities of daily living, including eating, mobility,
dressing, grooming, bathing or personal hygiene;
(b) Medication administration or monitoring as the person takes the medication; storing and
distributing medication;
(c) Maintaining or managing the resident’s cash resources or otherproperty;
(d) Monitoring the resident’s food intake or whether the person is adhering to a therapeutic diet;
(e) Providing structured behaviour management and intervention;
(f) Providing psychosocial rehabilitative therapy or intensive physical rehabilitative therapy.
726
Short term care, for a period of less than three months is also available, typically to provide respite care,
convalescent care, or hospice care for adults with complex needs.
727
5 | The Institutions and People Involved in Health Care Consent 143
Private Hospitals and Extended Care Facilities
Private hospitals also provide long-term care. A private hospital is dened as, “a house in which 2 or
more patients, other than the spouse, parent or child of the owner or operator, are living at the same
time, and includes a nursing home or convalescent home, but does not include a hospital as dened
in section1.”
728
Long-term care delivered in a public hospital is often called “extended care.”
729
Long-
term care and extended care are typically located in a wing of an acute care hospital, or a separate
building within the vicinity of the hospital.
730
Private hospitals and extended care units of hospitals are
governed by the Hospital Act, Hospital Act Regulation and the Patients’ Bill of Rights Regulation,
731
not
the CCAL Act and its associated regulations.
ere exist few legislated minimum standards on physical environment, stang requirements, admis-
sion procedures, care plans, nutrition, medication, the use of restraints, and “reportable incidents” for
hospital care as compared with long-term care facilities regulated by the CCAL Act. However, while
the BC government has not yet brought into force section 12 of the CCAL Act, which would bring
private and extended care hospitals within the ambit of the CCAL Act,
732
the BC government has made
some changes in response to concerns raised by the Ombudsperson in its Best of Care Report.
733
ese
changes are aimed at bringing these various sites of long-term care into better alignment.
734
Measures
have included:
• Making the Residents’ Bill of Rights (Schedule to the CCAL Act) applicable to patients
receiving care in private hospitals and extended care hospitals under to the Hospital Act,
and requiring these rights to be displayed prominently;
735
• Enacting the Patients’ Bill of Rights Regulation, which makes specied sections of the RC
Regulation applicable to private hospitals and extended care facility patients, including
standards in relation to privacy, receipt of visitors, complaint procedures, development and
implementation of care plans, and sharing of policies and procedures with residents and
family members;
736
and
• Introducing regular inspection processes for Hospital Act facilities.
737
Alternative Level of Care
Alternate Level of Care is a designation given to patients in a hospital setting who have been approved
for discharge, but are awaiting placement in a more appropriate facility or community setting.
738
According to a 2015 study of alternative level of care service use in BC, patients may be waiting for
long-term care, personal care homes, rehabilitation, respite, convalescence, home support services, or
various other services.
739
is use of acute care beds has a signicant impact on access to acute care services, and has been iden-
tied as problematic in terms of hospital resource eciency Canada wide.
740
Further, for frail older
people, delays in placement to more appropriate settings increases the chances of rapid deterioration in
health requiring further acute care, or premature admission to a long-term care facility.
741
In 2016/17,
16% of inpatient days for patients in BC aged 65 to 84 were designated as alternative level of care,
and 26% for those aged 85 or older.
742
In 2016-2017 the average length of stay in alternative level of
care decreased from 24 to 22 days for patients aged 65 to 84, and from 24 to 21 days for those aged
85 or older.
743
144 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
5.1.4 Acute Care
Older people living in long-term care or in the community are also likely to peri-
odically require the medical health services provided in an acute care hospital. e
denition of “hospital” in Part 1 of the Hospital Act, excludes private hospitals, but
includes a hospital designated primarily for the treatment of persons:
(a) suering from the acute phase of illness or disability,
(b) convalescing from or being rehabilitated after acute illness or injury, or
(c) requiring extended care at a higher level than that generally provided in a
private hospital licensed under Part2
Transfers between long-term and acute care are common, typically occurring when
a resident’s illness or injury cannot be dealt with by nursing sta, or by the resi-
dent’s physician.
744
5.1.5 Palliative Care
Palliative care in BC is provided in a number of settings, including Acute/Tertiary
Palliative Care Unit Beds, Community Hospice Beds, and Home-Based Palliative
Care Services.
745
Acute/Tertiary Palliative Care Unit Beds are located in acute care
settings, or campuses across the province. Acute palliative care is provided for patients
with complex needs who require increased nursing sta and daily involvement by
physician specialists and others because of their clinical instability, and often, psycho-
social issues. Community Hospice Beds located in a variety of settings are desig-
nated for short-term residential end-of-life care for adults. ese patients receive
care focused on comfort. Home Based Palliative Care Services are delivered by a
patient’s home health teams with access to more specialized health care profession-
als such as palliative care physicians, Advanced Practice Nurses, social workers, and
pharmacists.
746
5.2 HEALTH CARE PROFESSIONALS AND STAFF WHO PROVIDE
CARE TO PEOPLE LIVING WITH DEMENTIA
Care in home, community, and long-term care settings is provided by a variety of sta
and consulting health professionals, some of whom are regulated. As noted earlier,
only regulated professionals are obligated to obtain consent, whether from the person
living with dementia, or their substitute decision maker. Most health care settings
will include a mix of regulated and non-regulated sta.
Home care is provided by community health workers. Community health
workers may undertake some limited nursing and rehabilitation tasks that
have been delegated by other health care professionals.
747
e majority of
LPNs or RNs—they’re
usually sitting in the
managerial position. The
person who’s really kind of
running the show in assisted
living is the care aids.
– Licensed practical nurse
5 | The Institutions and People Involved in Health Care Consent 145
community health workers would not be regulated professionals. ey must be registered
with the Care Aide and Community Health Worker Registry if they work for an employer
who receives public funding.
Home or community nursing care is typically provided by a licensed nursing professional:
either a licensed practical nurse or a registered nurse, which includes a certied practice nurse
(particularly in remote locations), or a nurse practitioner.
748
Adult day centres work with a variety of health care and non-health care workers. Licensed
nursing professionals may provide health services, in conjunction with other health profes-
sionals, such as physical therapists, occupational therapists, and speech and language patholo-
gists. Community health workers may provide personal assistance or nursing or rehabilitation
tasks delegated by health professionals. Non-health related services, such as recreation and
social programs, are provided by other sta.
Long-term care facilities rely on the whole spectrum of health care professionals and
non-regulated sta; however, the majority of care is provided by non-regulated HCAs.
749
Nursing services may be provided by licensed practical nurses, or less commonly registered
nurses.
750
Pharmacists, physical therapists, occupational therapists and speech and language
pathologists also provide specialized services. Physicians, geriatricians and geriatric psychia-
trists provide medical diagnostic and treatment services. e majority of physicians attending
to residents in long-term care facilities are family physicians, without specialty training in the
area of geriatrics.
751
e CCAL Act does not require a physician or a registered nurse to be present on site.
752
e
statute requires a licensee to “assist persons in care to obtain health services as required”, and
that a physician or a nurse practitioner can be contacted in an emergency.
753
However, it can
be a requirement of the facility’s funding agreement with the health authority that a regis-
tered nurse remain onsite.
754
Each profession is required to have a governing regulatory body, called a College.
755
A College has a
general duty to act in the public interest in performing its functions.
756
Its statutorily mandated objec-
tives include:
• To superintend the practice of the profession;
• To establish, monitor and enforce standards of practice to enhance the quality of practice
and reduce incompetent, impaired or unethical practice; and
• To establish, monitor, and enforce standards of professional ethics.
757
A full picture of a designated health professional’s duties and obligations with respect to the issue
of consent to health care, requires consideration of not only the law, but also any applicable codes or
standards, with which health care professionals are required to comply. Codes and standards can go
above and beyond legal requirements. In addition, non-binding guidelines produced by a College to
146 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
assist a member in their practice are also indicative of the profession’s generally accepted standards
and expectations.
In sections below we consider four types of health care professional or sta: physicians; registered
nurses; licensed practical nurses; and health care assistants. For each type of practitioner we:
• Summarize the role they play in delivering care to people living with dementia,
particularly in long-term care;
• Highlight aspects of codes of ethics, practice standards, guidelines relevant to health care
consent; and
• Discuss education and professional development with respect to informed consent and
substitute decision making for health care.
5.2.1 Physicians and Surgeons
Physicians who working with older people in Canada include:
• Family physicians (some with additional “Care of the elderly” training);
• Geriatricians (specialists in geriatric medicine); and
• Geriatric psychiatrists.
758
People living with dementia will usually have a physician with a general family practice supervising
their overall care. e general practitioner will generally refer the person to a specialist, such as a geri-
atrician, geriatric psychiatrist, or a neurologist, who will be involved in both diagnosis and follow up
treatment for dementia.
Information on the role of physicians in long-term care has proven dicult to pinpoint. A 2014 report
by the Residential Care Committee of Vancouver Division of Family Practice has noted that “there
is no common understanding of what can be expected of the House Doctor or of any physician who
attends to residents at a facility.”
759
By contrast, the Society for Post-Acute and Long-Term Care
Medicine, otherwise known as the American Medical Director’s Association has published a detailed
policy statement on the role of the attending physician in the nursing home, which could apply broadly
to the Canadian setting. e identied roles include:
• Provide initial patient care, including assessment of new admissions;
• Support patient discharges and transfers, including provision of information and
documentation, and follow up with other facility;
• Make periodic on-site visits and respond to acute health needs, including documentation
of patient’s condition, status and goals, and communication with sta and family;
• Ensure adequate ongoing coverage, including when the physician is unavailable;
• Provide appropriate care to patients, including assessments and care goals;
5 | The Institutions and People Involved in Health Care Consent 147
• Provide appropriate, timely medical orders and documentation; and
• Be aware of, and respect, relevant policies, procedures, and rights, and standards of
professionalism.
760
Geriatricians are specialists in geriatric medicine, having completed an additional two-year residency
requirement for completion of the Certicate of Special Competence in Geriatric Medicine.
761
e
Canadian Medical Association describes a geriatrician as a specialist who “deals with the prevention,
diagnosis, treatment, remedial and social aspects of illness in older people, mainly patients 75 years of
age or more.”
762
Geriatricians work with others in the health care team to prevent illness and restore
optimal health and wellness.
763
Geriatric psychiatry focuses on the diagnosis and treatment of complex mental disorders that
uniquely occur in older people. Geriatric psychiatrists work in multidisciplinary teams both within
long-term care and other health care settings.
764
eir scope of practice includes treatment of people
living with dementia for psychiatric symptoms related to the dementia, complex capacity assessments,
polypharmacy, and risk assessments involving the use of psychotropic medication.
765
Codes of Ethics, Practice Standards, and Guidelines
e College of Physicians and Surgeons of British Columbia (CPSBC) has not produced a Standard
or Guideline with respect to consent to health care of adults.
766
e CPSBC has adopted the Canadian
Medical Association Code of Ethics (“the Code”). e Code is an ethical guide for physicians across
Canada, and includes a section on “Communication, Decision Making and Consent”. e content of
this section is brief and generic, not reecting the nuances in consent law across the country. However,
the Code states in the introductory section that “[p]hysicians should be aware of the legal and regula-
tory requirements that govern medical practice in their jurisdictions.”
Key general principle included in the Code are:
21. Provide your patients with the information they need to make informed decisions about their
medical care, and answer their questions to the best of your ability.
22. Make every reasonable eort to communicate with your patients in such a way that information
exchanged is understood.
24. Respect the right of a competent patient to accept or reject any medical care recommended.
28. Respect the intentions of an incompetent patient as they were expressed (e.g., through a valid
advance directive or proxy designation) before the patient became incompetent.
Importantly, the Code includes the following statement, which is not an accurate reection of BC law,
where the Public Guardian and Trustee is the health care decision maker of last resort:
29. When the intentions of an incompetent patient are unknown and when no formal mechanism
for making treatment decisions is in place, render such treatment as you believe to be in accordance
with the patient’s values or, if these are unknown, the patient’s best interests.
767
148 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Of further concern, the paragraph contains no reference to substitute decision makers for health care
or advance directives, neither of which is clearly captured by the concept of a “formal mechanisms for
making treatment decisions.” In BC the Public Guardian and Trustee is the decision maker of last
resort in such circumstances, not the patient’s physician.
e Canadian Medical Protective Association, which is a membership driven body aimed at “[p]
rotecting the professional integrity of physicians and promoting safe medical care in Canada”,
produces a detailed guide for Canadian physicians on consent to health care. However, being designed
for a national audience, this guide also does not reect the nuances of BC law.
768
e CPSBC’s Guideline on prescribing practices articulates the physician’s obligation, when prescrib-
ing medication, to inform their patient about “drug eects and interactions, side eects, contraindi-
cations, precautions, and any other information pertinent to their use of the medication.”
769
CPSBC
by-laws set out detailed requirements for physician record-keeping and documentation, which
includes a requirement to keep a clear record for each patient of “the specics of any treatment, recom-
mendation, medication and follow-up plan.” e bylaws do not include any requirement to document
the consent process.
770
Training Regarding Health Care Consent
Key informants indicated that health care consent is taught in medical school, in family practice
residency, and during psychiatry residency. One key informant, who teaches at UBC, indicated the
topic has been part of the year four curriculum, but only for the last 5-10 years. As such, only recent
graduates would have studied this material unless they sought out information on the topic outside of
class time. Stakeholders advised us that workplace culture has a signicant impact on practice, such
that new grads quickly adapt their practice to what they see in the facility, rather than holding fast to
what is taught in school.
Ongoing professional development is a requirement of membership in the College, but there is great
freedom in choosing the topics and fora for learning. Independent study, podcasts, and journal read-
ing are included, in addition to conferences and seminars. As compared with other regulated health
care professionals, physicians are required to engage in a signicant number of hours of professional
development every ve year cycle—a minimum of 400 and 250 credits depending on whether they
maintain their professional development though either the Royal College of Physicians and Surgeons
of Canada (specialists) or College of Family Physicians of Canada (general/family practitioners).
771
Accreditation can be obtained for conferences, seminars, fellowships, PhDs/Masters, journal reading,
podcasts, curriculum development, teaching, and other self-monitored activities.
772
ere does not
appear to be any requirement of ongoing professional development regarding legal issues impact-
ing practice.
5.2.2 Nursing Professionals
On September 4, 2018 the anticipated BC College of Nursing Professionals (the Nursing College)
773
was formed by the merger of the:
5 | The Institutions and People Involved in Health Care Consent 149
• College of Licensed Practical Nurses of British Columbia;
• College of Registered Nurses of British Columbia; and
• College of Registered Psychiatric Nurses of British Columbia.
In this report we distinguish between registered nurses and licensed practical nurses as they tend to
play dierent roles in the care of older people living with dementia, and they will have been licensed
to practice as a function of dierent training.
Registered Nurses
RNs can make a nursing diagnosis of a condition but are not authorized to diagnose a disease or
disorder.
774
Generally RNs cannot prescribe drugs for treatment of a diagnosed condition, disease
or disorder. In very limited situations which typically involve emergency situations, such as a case
of anaphylaxis, cardiac dysrhythmia, opiate overdose, and respiratory distress in a known asthmatic,
RNs may prescribe.
775
RNs may administer certain drugs known as Schedule 1 drugs which have been
ordered by a physician or nurse practitioner. e authority of nursing sta to prescribe, compound,
dispense and administer medications to residents of long-term care facilities in BC is primarily set out
in the Nurses (Registered) and Nurse Practitioners Regulation, which must be read in conjunction with
relevant scope of practice nursing standards published by the Nursing College.
776
Within their scope of practice, RNs can practice autonomously, providing clinical expertise and main-
taining therapeutic client relationships. e RN in long-term care provides “health promotion, disease
prevention, and curative, supportive, rehabilitative and palliative nursing services as needed.”
777
An RN
will conduct needs assessments, and oversee implementation of the resident’s care plan.
778
RNs are
also responsible for scheduling and charting.
779
RNs consult and communicate with the resident, their
families, and other health professionals.
780
RNs are also required to supervise LPNs and HCAs, who
make up the bulk of the sta in long-term care. Nursing treatments which are planned and performed
by RNs (with overlapping roles of LPNs) include skin and wound care, medication administration,
tube feeding, ostomy care and ventilation assistance.
781
Nurse practitioners (NPs) are RNs with additional training and education at the graduate level.
782
Streams of practice for NPs are family, adult, and pediatric. In terms of practice with older people,
NPs practice in acute and long-term care, as well as community care settings.
783
According to the then
College of Registered Nurses of BC, only 28 NPs in BC self-identify their work area as “Geriatrics/
Long Term Care” and/or “Long Term Care/Nursing Home”.
784
NPs must practice in accordance with
the Scope of Practice for Nurse Practitioners as published by the Nursing College, pursuant to the
Nurses (Registered) and Nurse Practitioners Regulation under the Health Professions Act.
785
e main
aspect of NP practice which distinguishes NPs from RNs is their ability to autonomously diagnose
and treat acute and chronic illnesses, which includes the ability to prescribe certain drugs,
786
and to
order x-rays, ultrasound and laser.
787
NPs are also authorized to issue an order to a RN.
788
A certied practice nurse is an RN who has successfully completed a certication program approved
by the Nursing College which authorizes the nurse to undertake what would otherwise be considered
restricted activities.
789
A nurse may be certied in the following areas: reproductive health, remote
150 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
nursing, and RN rst call.
790
Nurses certied in remote nursing and RN rst call are authorized to
diagnose and treat minor acute illness in accordance with established decision support tools. ese
activities include prescribing, administering, compounding, or dispensing some medications with-
out an order.
791
RNs, NPs, and certied practice RNs are all required to comply with practice standards produced by
the Nursing College with respect to the administration and dispensing of medications.
792
Nurses are
authorized to receive orders for “o-label” use of medications, which is essentially the unapproved use
of a legal medication. In these circumstances, practice standards require a nurse to be well informed
about the medication, the reasons it has been ordered, and its risks and benets to the client.
793
Codes of Ethics, Practice Standards, and Guidelines
e newly created Nursing College produces a Practice Standard on “Consent”, originally published
by the College of Licensed Practical Nurses of British Columbia. e practice standard links with
other standards, policies, and bylaws of the College, and all legislation relevant to nursing practice. e
Standard sets out 12 principles which broadly follow the requirements of the HCCA, commencing
with an overarching statement that “nurses respect clients’ rights to make decisions about the manage-
ment of their own health care.”
794
At the outset, the Standard expressly notes the role of employers
in supporting nurses to comply with consent requirements.
795
e principles go on to provide that
nurses must:
• Assess the capacity of clients to provide consent;
796
• Obtain the informed consent of the client for the health care services they carry out; and
• Document the consent process.
797
By way of comparison, physicians do not have a similar professional obligation to document the
consent process.
798
e Standard (in line with the legislation) expressly provides that “it is not appropriate for nurses to
take responsibility for obtaining consent for care or treatment provided by another health professional
(e.g., surgery, anesthesia).”
799
In this respect physicians or others cannot delegate their duty to obtain
informed consent from the patient to a nurse. However, the Standard does place an obligation on
nurses who participate in the delivery of care or treatment by other health professionals to:
• Verify that consent has been given for the proposed treatment;
• Ensure clients have sucient information to make an informed decision; and
• Help clients to understand information and acquire further information.
800
e College also produces a Professional Standard on Ethical Practice. Some ethical standards rele-
vant to the issue of consent to health care include requirements that the nurse:
• “Provides care in a manner that preserves and protects client dignity;”
801
and
5 | The Institutions and People Involved in Health Care Consent 151
• “Recognizes, respects and promotes the client’s right to be informed and make
informed choices.”
802
Training Regarding Health Care Consent
While recent graduates may be taught informed consent law in school, as the latest curriculum has a
module on the law, we are not certain that all registered nurses were exposed to this content. Nurses
get some of their training in college and university; however, many have been practicing for decades
or received training abroad, having become licensed to practice in BC by writing examinations devel-
oped to meet international or national standards. e Nursing College materials include a jurispru-
dence learning module. Health care consent law is covered in the materials associated with the course.
However, there is no jurisprudence exam required prior to registration. e program is essentially a
form of independent learning with accompanying self-assessment.
Key informants indicated nurses access ongoing professional development through the
following avenues:
• Sharing documents or articles through emails (sent by Nursing College, health authority
or other employer);
• Reviewing material on Nursing College’s website;
• Participating in sta teleconferences with an education component;
• Beneting from campaigns with targeted training, such as the REACT tool, led by the
health authorities; and
• Attending conferences and other learning events.
RNs have no minimum ongoing professional development requirements associated with maintaining
registration.
Licensed Practical Nurses
LPNs play a key role in day-to-day care for people living in long-term care, and will spend signicantly
more hands-on time caring for long-term residents than an RN or physician. An LPN’s role can over-
lap with that of a HCA in some areas, such as the provision of personal care services. However, an LPN
will also have the responsibility for monitoring and assessing residents, medication administration,
wound care, maintaining patient records, collecting samples for medical testing, and dietary care.
803
An LPN may be involved in developing a resident’s care plan, ensuring the care plan is followed, and
evaluating the plan’s eectiveness.
804
Activities which an LPN can perform without an order, and restricted activities that an LPN can
perform with an order from a health care professional, are set out in the Nurses (Licensed Practical)
Regulation.
805
In terms of an LPN’s authority with respect to drugs, an LPN cannot prescribe Schedule
I drugs. Like an RN, an LPN can compound, dispense and administer Schedule I drugs for the
purposes of treating a limited range of urgent conditions, such as anaphylaxis, without an order, and
can compound, dispense and administer Schedule I drugs at any time, with an order.
806
is includes
medications which have been ordered on a PRN (as needed) basis.
807
152 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Codes of Ethics, Practice Standards, and Guidelines
e Nursing College publishes a practice standard on consent to health care which applies to the
practice of LPNs.
808
e standard reects the law in the HCCA with respect to the LPNs obligation to
obtain informed consent of the patient prior to administering health care. As with RNs, the Standard
notes that LPNs “are not responsible for obtaining consent for health care provided by another health
care provider”.
809
However, LPNs do not have an obligation similar to that of the RNs to verify that
consent has been obtained. On the other hand, LPNs do have obligations to “[m]ake sure other health
care providers are aware when a client needs more information or is reconsidering the plan of care”.
810
LPNs have a unique client education obligation to “help clients understand that they have the right
to refuse or revoke consent at any time and for any reason.”
811
Similar to RN ethical standards, LPNs
have an obligation to protect a client’s dignity, and respect and promote their right to make informed
choices.
812
Principle 10 imposes on LPNs a unique requirement to be “aware of the dierence in power
between themselves and clients, and do not use that power to inuence the client’s decision.”
813
LPNs
also have a professional standard identical to RNs to:
• Respect and protect client dignity; and
• Recognize, respect and promote a client’s right to make informed decisions.
814
e Canadian Council for Practical Nurse Regulators, a federation of provincial and territorial regula-
tors of LPNs, publishes Standards of Practice which apply across Canada.
815
e Standards are author-
itative statements that dene the legal and professional expectations of LPN practice nation-wide.
While there is no national standard specic to issues of informed consent, supporting patient auton-
omy and access to information are key aspects of LPN practice reected in the national Standards of
Practice. e Standards require LPNs to:
• “Engage clients in a therapeutic nurse-client relationship as active partners for mutual
planning of and decisions about their care;”
816
and
• “Provide relevant and timely information to clients and co-workers.”
817
Training Regarding Health Care Consent
Prior to 2011, there had not been a standardized LPN curriculum in BC for over 10 years. Most
practicing LPNs were educated during a time when there was signicant variation in training. One
key informant noted that although in recent years LPNs have acquired greater responsibility, training
is not necessarily ensuring that practicing LPNs have adequate understanding of the law. However,
LPNs are uniquely required to take a jurisprudence education and exam once every three years, which
includes broad elements of health care consent law.
818
Nursing Jurisprudence is broader than case law,
being dened by the College as the study and application of law as it relates to the legal principles,
regulations and standards that govern the practice of nursing, and includes consent law. Otherwise,
there are no mandatory professional development requirements for LPNs in BC.
5 | The Institutions and People Involved in Health Care Consent 153
5.2.3 Health Care Assistants
HCAs are not a self-regulated health care profession, and they do not have a legally dened scope of
practice in BC. Registration with the BC Care Aide and Community Health Worker Registry (the
Registry) is mandatory for HCAs who work in publicly funded long-term care facilities.
819
However,
the Registry does not regulate practice in the manner of a college. Eligibility for registration requires
completion of an educational program in BC recognized by the Registry (or an equivalent program
for out-of-province and international HCAs). e Registry ensures that educational programs in BC
follow the provincial curriculum, and implements a common set of training standards.
820
In 2016 the
BC Government announced an intention to bring the Registry within the Nursing College, which
will regulate HCA practice.
821
As noted above, HCAs tend have the most ongoing contact with a long-term care resident, providing
care under the supervision of RNs and LPNs. Personal care tasks include toileting, eating, hygiene
and dressing.
822
In some circumstances, nurses can delegate tasks to HCAs. Delegation to an HCA
occurs when the task is one ordinarily performed by a nurse and outside the role description of an
HCA.
823
e delegation must be task-specic, with clearly dened limits and be in the best interests
of the resident. A nurse cannot delegate a function: a client care intervention that includes assessing
and deciding to perform the function.
824
e delegated task may include a restricted activity (which
includes the administration of medication), or a nursing activity which is not restricted.
825
e nurse
remains responsible for supervision of the HCA in their performance of the task, and the HCA must
have the appropriate skills and training to undertake the task.
826
Training Regarding Health Care Consent
HCAs receive their training in colleges throughout BC. e curriculum for HCA training is the
responsibility of two government ministries:
• e Ministry of Health is responsible for setting and reviewing HCA competencies on a
regular basis “to ensure that basic competencies are meeting the needs of clients, families
and the health care system as a whole”;
827
• e Ministry of Advanced Education uses this Core Competency Prole to develop and
periodically review the curriculum.
Revisions to the curriculum appear to have been last carried out in 2015, with the help of a Steering
Committee made up of representatives from various stakeholder groups.
828
In addition to the
curriculum, a supplement is produced to “support the delivery and assessment of required learning
outcomes.”
829
e Alzheimer Society of B.C. was involved in developing aspects of this supplement.
For internationally-trained nurses, the Nursing Community Assessment Service (NCAS) undertakes
a competency-based assessment, upon referral by the Registry. NCAS produces an assessment report
indicating an applicant’s strengths and weaknesses. Based on this report, the Registry determines
whether an applicant must undertake any remedial education before being registered in BC.
830
154 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Although continuing education is not mandatory for registered HCAs, the Registry
has a mandate to support professional development of HCAs,
831
which it meets by
providing easy access to online learning modules on various topics. Dementia care
is covered in these modules. However, there does not appear to be any instruction
specically dealing with consent and substitute decision making, and the HCA’s role
in the consent process, in either the HCA curriculum or professional development
modules accessible through the Registry.
5.3 PHYSICIAN REMUNERATION IN BC
Currently, there are four funding models for physician remuneration in BC:
• Fee-for-service (FFS);
• Alternative Payment Programs (APP);
• Medical On Call Availability Program; and
• Rural Funding
832
e main two models used in BC are FFS and the APP, with the majority of physi-
cians being compensated under the FFS model.
833
BC provides two main APP
funding methods through the Ministry of Health: service agreements and sessional
arrangements. However, a third population-based funding model has been imple-
mented on a very limited basis in BC arising out of a pilot project in 1999, which
has yet to be expanded. Physicians may also access additional funding through rural
practice programs, which are aimed at recruiting and retaining physicians in rural
practice, and through the Medical On-Call Availability Program, which compensates
physicians for providing on-call emergency care to new or unassigned patients.
834
e Medical Services Commission administers the Medical Services Plan (MSP)
under the authority of the Medicare Protection Act.
835
MSP insures its registrants for
medically required services provided by general practitioners, specialists, and some
other health care professionals, paying them on a FFS or APP basis.
836
Physicians
must be enrolled with MSP in order to receive payments, and must be licensed with
the College of Physicians and Surgeons to be eligible to enroll in MSP.
837
5.3.1 Fee-for-Service Billing
Under the FFS remuneration model, physicians receive payment from MSP per
service they provide to their patients, using a separate billing code to identify the
type of service provided. Under this model, physicians are essentially self-employed
professionals. An enhanced FFS program is available in most provinces and terri-
tories in Canada, including BC, which allows physicians and some specialties to
access additional compensation for complex and chronic disease management.
838
…The compensation for
physicians, to provide support
to people living residential
care, while it has improved,
honestly truly does not reect
the complexity of the work.
– Geriatric Psychiatrist
5 | The Institutions and People Involved in Health Care Consent 155
We have set out some types of additional compensation available in BC, and some background to
their evolvement.
As described by Mazowita, an “escalating crisis in family medicine” in the 90s and early 2000’s resulted
in the creation of the General Practices Services Committee, whose mandate was to “nd solutions
to support and maintain full-service family practice in BC.”
839
Solutions to the crisis in BC largely
revolved around practice incentives for full-service family doctors, training programs, and recruitment
incentives.
840
By way of comparison, other provinces, such as Ontario, opted for signicant structural
reform.
841
BC nancial incentives included new MSP billing fees for compensation of telephone or
email consultations, and group visits.
842
In addition to these earlier operational reforms, the Ministry of Health’s 2015 Primary and Community
Care Policy Framework highlights further initiatives in this area, such as the Family Practice Incentive
Program. e program currently includes the following incentives:
• Mental health incentive payments for helping plan and manage care for patients with
mental health issues, including dementia.
843
• Two complex care planning and management incentive payments available to family
physicians,
844
for patients diagnosed with at least two chronic conditions from a list of
conditions, one of which is a “chronic neurodegenerative disease”. Dementia on its own
would not warrant the use of these codes.
845
• Palliative care incentive payments for assisting with care planning for palliative patients.
846
None of the above are available for patients residing in long-term care. However, Residential Care
Initiative incentive payments are available for family physicians. ey include the following additional
fee payments:
• Patient Telephone Management Fee
• GP Allied Care Provider Conference Fee
• Chronic Disease Management Incentives
• MSP Fees in Residential Care
• Billing for Non-urgent/non-emergent visit
• Billing for Patients in Long Term Care when specially called
• Billing for Patients in Long Term Care when Called to See at Night
• Visits for terminal care
• Billing for phone advice about patients in LTC
• Minor Procedures and Related Tray fees
847
156 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
5.3.2 Alternative Payment Program
Alternative models for physician remuneration have become increasingly popular over the last several
years, with APPs now making up about 20% of the overall total amount available for physician services
in BC.
848
e aim of APPs is to ensure sucient access to care in health settings and geographic loca-
tions in which the traditional FFS model does not guarantee physicians the necessary nancial support
or stability.
849
BC Ministry of Health provides for two main alternative funding models: service agreements and
sessional models.
850
ese APPs fund BC’s health authorities for their direct or indirect payment of
contracted service, sessional and salaried physicians.
851
e APP is administered by the Physician
Compensation Branch within the Ministry of Health. Under a service agreement, a salaried physician
will receive a regular payment from an employer under an employment contract based on a period
of time in which the services are provided. Sessional arrangements between a health authority and a
physician allow the physician to be contracted to provide services for shorter periods of time, and are
appropriate for situations in which a full-time sta person is not required.
In addition to these main two alternative funding models, alternative service contracts are available,
such as two blended-models, including a Population Based Funding approach, and a Northern Model
currently being prototyped.
852
It robs me of energy to constantly follow up with things… it is demanding to build
relationships with people in care.
– Family caregiver
6 | Consultation Findings 157
is chapter summarizes what we learned from speaking with stakeholders about health care consent
practice in BC. As noted above, consultation input came from four sources:
• Key informant interviews with people whose work involves consent to treatment and
medication for older people living with dementia (N = 65);
• Focus groups with people living with dementia and their family caregivers (events = 13; N
= 58; 14 = people living with dementia; 44 = family caregivers);
• Conference and community presentations where we integrated a question and answer
session oering practitioners (nurses, social workers, lawyers, directors of care facilities,
etc) an opportunity to identify their own concerns regarding health care consent
(events = 8); and
• Online survey of family caregivers (N = 28).
is chapter is divided into three parts:
1. Feedback from people who deal with health care consent in their work (health care
professionals, care facility sta, lawyers, advocates, and others);
CHAPTER 6
Consultation Findings
There is kind of like a common consensus that if a person is admitted to the hospital, then the
family would, that means the family would agree that the physicians will provide professional
care for the loved one, right?
– Nurse
158 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia158 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
2. Feedback from people living with dementia and family caregivers; and
3. Summary of consultation ndings.
In many instances, there was overlap between the concerns of key informants and focus groups partic-
ipants. However, in some respects there were dierences that we did not want to obscure.
We provide a list of key informants in Appendix B. Focus groups are summarized in Chapter 1 under
methodology. At the end of this chapter we distill the consultation ndings down to 23 key issues that
we address in Chapter 7.
6.1 HEALTH CARE PROFESSIONALS AND STAFF
6.1.1 Health Care Consent Practice
When do Health Care Providers Seek Informed Consent?
1 ere is a type of care or threshold of medical intervention at which all physicians
853
are
very clear that consent is required. Usually written consent is obtained in these instances, for
example, surgery and dialysis.
2 Beyond these more intrusive medical interventions, physician practice with respect to
obtaining informed consent varied considerably. While the overwhelming majority of
physicians were clear on the general legal and ethical obligation to obtain informed consent
to health care, less than a quarter of these physicians stated that they always obtain consent in
practice. e level of intervention was often determinative of whether prior informed consent
was obtained. Even those physicians who stated they always obtained consent were clear in
their observations that other physicians often do not obtain consent.
3 Practicality, particularly in long-term care, was a common reason identied by physicians for
not obtaining timely informed consent. is view was supported by other relevant stakeholders,
including directors of care, non-prot agency representatives, and health authorities.
4 Based on our interviews with nurses, they seem knowledgeable on their obligations to obtain
consent for nursing interventions. However, a nurse’s role vis-à-vis the consent process
I don’t think it’s fair to ask families because they just don’t have the knowledge base... because
they’re not doctors. It’s very hard for them. What are they consenting to? They don’t have the
background. They don’t have the context.
– Geriatric psychiatrist
6 | Consultation Findings 159
with respect to the provision of health care by physicians was less well understood. One key
informant noted that often a nurse may be aware that a physician did not obtain informed
consent for a medication they are administering, but practically the nurse does not have the
time to remedy the situation, which can put a nurse in a professionally challenging situation.
5 In long-term care, stakeholders from multiple backgrounds, including nurses, physicians and
health authorities, noted that it is common practice for nursing sta to seek treatment from
physicians for residents over the telephone, based on the nurse’s observations and reporting,
and for physicians to prescribe medications relying on these observations, without conducting
an in-person assessment. One nurse characterized this practice as problematic.
6 Approximately half of the physicians interviewed made statements indicating they were aware
that sometimes, particularly in long-term care, no-one is consenting to health care, in instances
where a person does not have the capacity to make health care decisions independently,
and has no family or representative to act as supportive or substitute decision maker. e
physician or facility may contact the Public Guardian and Trustee (PGT) if major health care
procedures, such as surgery, are recommended. Otherwise, in these cases physicians, or the
health team as a collective, tend to make health decisions for the person who has no capacity
and no family, applying a best interests approach. is practice was conrmed by several other
stakeholders interviewed, including two social workers, and a director of care. One director
of care indicated that decisions are made this way for about 10-15 of the 180 residents under
that director’s care. One health care professional commented that this dynamic resulted in a
“blurring” of roles.
7 Outside of the physicians interviewed, a signicant number of key informants said informed
consent is not always obtained. These informants ranged in backgrounds from health
authorities and nurses to social workers and a director of care.
8 Some key informant stated that in long-term care “you lose your citizenship rights at the door.”
Involving Substitute Decision Makers and Family
9 Despite the variability of practice with respect to obtaining consent, there was general
consensus that it was good practice to keep families informed of changes in medication. For
those physicians who did not always obtain prior informed consent, which was the great
160 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
majority interviewed, informing families of treatment decisions after the fact was common
practice—shortly after the fact, or much later, at a care conference. Some physicians leave it
up to the family to reach out for updates.
10 Key informants noted that substitute decision making is a signicant practice issue in long-
term care because the vast majority of the population has moderate to severe dementia. People
are moving into long-term care later in the progression of disease as there has been a push to
keep people in the community for a longer period of time.
11 In long-term care, many health care professionals, sta, and directors of care said they adapt
their practice regarding consent to suit the expectations and desires of each family. Some
families expect discussion and prior consent for every pill; some expect updates following
every medication change; others are content with periodic updates via annual care conferences.
12 Even where one temporary substitute decision maker (TSDM) or a representative has been
chosen, health care professionals generally work with all family members in decision making
to gain their perspective, and to achieve consensus where possible. All social workers indicated
that family meetings to aid decision making were a common practice. Family meetings with
the care team or the health care professional were considered by many key informants—
including physicians, social workers, an ethicist, and representatives of the health authorities—
as good practice from both an ethics and risk/conict avoidance perspective.
13 A few informants conrmed caregiver reports that family will be asked to stay away from the
long-term care facility during a period of adjustment of two or more weeks. ese informants
stated that during that time frame many medication decisions are often made without
involving a substitute decision maker or any family.
14 With few exceptions, key informants who observe substitute decision making processes
were of the view that family members and substitute decision makers generally have a poor
understanding of their obligations as decision maker, particularly around how decisions
should be made—favouring acting in what they perceive to be in the person’s best interests,
or their own interests, as opposed to the known wishes of the person living with dementia.
ese key informants included a signicant number of physicians, social workers and nurses,
as well as representatives from health authorities, and directors of care. A few key informants
commented that even where substitute decision making obligations were understood, emotions
often prevented appropriate decision making. A common example given was palliative care
decisions where the substitute decision maker was not ready or willing to consent to palliative
care options, but insisted on all possible medical interventions, despite the age, frailty, and
comfort of the patient.
15 Some informants shared stories of family members not making good decisions for people
living with dementia. Disagreements tended to be regarding:
• Pain relief—family reluctant about pain medication because the person living with
dementia rarely used pain medication;
6 | Consultation Findings 161
• Physical restraint—family insisting on bed rails and other restraints to avoid falls in
circumstances where the physician felt the restraint increased the risk of harm;
• Feeding and swallowing near end of life—degree of intervention to address
swallowing and choking (e.g. tube feeding); and
• Anti-psychotics—general family refusal to treat with anti-psychotics.
16 Health care professionals noted that circumstances where they have concerns about abuse
or neglect in relation to the TSDM making decisions in a manner not in line with statutory
obligations are challenging. Some professionals feel condent to take direction from the
sibling who is most attentive to what the person living with dementia would have wanted, but
do nd this an awkward position to be put in as care provider. Both sta and physicians can
be uncomfortable making the decision to disqualify a substitute decision maker, and go to the
next person in the list within the HCCA, especially in the face of threat of legal action.
17 Some health care professionals spoke of families not having enough knowledge of advance
frailty, and what to expect at the end of life, in order to make informed decisions that truly
reect people’s wishes and values.
18 Power dynamics between family and the person living with dementia on the one hand, and the
physician on the other, can pose a barrier to informed consent. Some key informants said they
notice that families will not question the authority of the physician. Another key informant
noted fear of reprisal.
19 Indigenous people who come from rural or reserve communities will be removed from their
communities if they require long-term care, because the Federal Government has not funded
the development of long term-care facilities on reserve. Several stakeholders from both
policy and nursing backgrounds identied that distance, coupled with lower health literacy
rates in Indigenous communities, can result in challenges engaging Indigenous people in
decision making.
Engaging the person Living with Dementia
20 Practices vary in terms of involving people living with dementia in their health care decisions.
Often people living with dementia are not involved in their own decisions. ere can be an
assumption that they do not have enough capacity to participate because they are living with
dementia, or have a guardian, which can result in complete exclusion from decision making.
21 One consultation participant identied ageism as a barrier to good practice, stating that there
can be an attitude that older people will not understand the medical information.
22 Health care professionals and staff are reluctant to accept non-verbal methods of
communication—even where people have aged with a disability, and used these communication
strategies throughout their lives.
I think sometimes it’s easy for the health care team to, if a person has dementia, to assume
that they cannot make any decisions for themselves, and to deal exclusively, directly with the
substitute decision maker. So I think that there’s room to at least try to include the adult in
more of the decisions. I think that’s hard because that takes time.
– Social worker
162 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
23 One physician said that one of the reasons why physicians do not know how to engage older
people in decision making is that they lack training in geriatrics. Similarly, one stakeholder
who works in long-term care said that sta do not adequately understand dementia, and
require training in this area.
24 A signicant number of key informants from a variety of professional backgrounds, including
health care, law, and social work, stated that one of the problems with practice in community,
acute care and long-term care is that an incapability assessment is not conducted. As a result,
it will not be clear how much people understand, and how to support them to participate in
decision making.
25 A number of stakeholders in health care said they had not received training in how to assess
incapability, and did not know how to conduct an assessment. One third of physicians
interviewed, as well as several additional key informants, stated that family physicians don’t
generally have the specialized training or skills required to properly assess incapability. One
health care professional said sta wind up in uncomfortable situations where the family
member wants to make the decision, and insists the person living with dementia does not
have capacity, but sta do not have the skills to make the determination.
26 ree key informants who are advocates or lawyers stated that health care professionals and
sta sometimes just accept the family member’s opinion that the older person with cognitive,
hearing or speech impairment lacks capacity, and then accept the TSDM’s decision.
27 One lawyer indicated that they have twice seen physicians sign adavits expressing the
opinion that a person was incapable based on the person’s refusal to participate in the
incapability assessment.
28 Hearing and speech issues can result in a health care professional or sta wrongly assuming
the person living with dementia has understood information about medication or treatment,
or has provided consent. Many people working in health care do not know how to support
older people with hearing issues. One key informant also said that health professionals often
do not take account of hearing and speech issues appropriately when assessing incapability,
for example, ensuring a resident is wearing their hearing aids during an appointment. One
lawyer conrmed that they have seen a family member deliberately withhold hearing aids in
the context of an incapability assessment.
Then I will ask them in private, is this really what you want. Just to conrm that… they are not
being coerced by son. If they say no, no, no, I don’t want to know, again that can be a cultural
thing. For a lot of Asian cultures, autonomy is not as important as family harmony, and
your preferences are not as important as what is best for the family… they are making the
autonomous decision not to know.
– Geriatrician
6 | Consultation Findings 163
29 Assent without questions or understanding occurs. Older people will sometimes say “yes”
even though they don’t understand what the health care professional or sta is saying. One
key informant speculated that this was possibly because they want to please, or because they
do not want to admit a lack of understanding.
30 Finding a substitute decision maker for people who have no family can be a huge challenge.
If the person does not have a representative to act as an advocate, there may be no one willing
and able to take the time and eort required to ensure the person living with dementia is
participating in their own decisions. One key informant said this dynamic is particularly true
for people who have aged with intellectual disabilities, and have always been non-verbal: lack
of advocacy can result in exclusion from decision making.
31 Older people from some cultural backgrounds will sometimes be unwilling to discuss their
care with the physician, even if they have full mental capacity. ey may insist the health care
professional speak with their son or the daughter.
6.1.2 Knowledge of Health Care Consent Law
Knowledge of When Consent is Required
32 Although understanding how and when to get informed consent is a core competency for all
health professionals, it appears that some physicians do not understand health care consent law.
33 From our own assessments of social workers through interviews, as well as through the views
expressed by social workers themselves and other health care professionals, social workers
generally understand the law well. Health care professionals conrmed they rely on hospital
social workers for support in understanding the law.
34 Both health care professionals and social workers appear to have good knowledge of the
TSDM list under the HCCA, and of the role of representatives in health care decision making.
However, a signicant number of stakeholders including lawyers, health authority sta, social
workers, and a director of care said that that care facility sta, health care professionals, and
families often mistake a power of attorney as providing the holder with a right to make health
care decisions.
No, it’s not our practice, I don’t think that people know that, so what you’re saying is that, if
there’s a patient that there’s no available substitute decision maker, you can just call the PGT
even if they are unfamiliar with the patient? …No, I don’t think we know. I don’t think that’s
known. That’s unknown actually. I don’t even know who to call for that.
– Geriatrician
164 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
35 ere appears to be limited mandatory material on health care consent law as part of college
and university curricula for health care professionals. Some physicians said that while health
care consent is taught in medical school, and as part of various residencies, knowledge is
lacking because the material is not reviewed on a regular basis. Health care professionals
identied on the job training as particularly helpful in supporting good practice.
36 Almost every single key informant expressed the view that further education on health care
consent law would be helpful for members of their profession.
37 ere is some confusion about the Medical Order for Scope of Treatment (MOST), and
whether it is in eect a form of consent in advance to health care. According to one health
authority sta, some physicians treat the MOST as a legal document with the authority of a
representation agreement.
38 Some health care sta and professionals said they assume that family trust them to make the
right choices regarding medication and treatment, and so only contact them regarding what
they consider to be major health care decisions. Some health care sta presume consent based
on the relationship or admission.
39 Some health care sta and professionals think notice after the fact meets their legal obligation
to get informed consent, even in non-emergency contexts.
Understanding of the Role of the Public Guardian and Trustee
40 Within long-term, acute and community care, there seems to be confusion about the mandate
of the Public Guardian and Trustee (PGT) with respect to health care decision making. A
number of key informants, including physicians, health authority representatives, nurses,
social workers, and a geriatrician, expressed confusion about the PGT’s role. Some were not
aware that they could contact the PGT as temporary substitute decision maker of last resort
for patients without a substitute decision maker. Others expected the PGT to mediate or
resolve family disputes, which is not within the PGT’s mandate.
41 Some key informants indicated that they were unaware that the PGT’s mandate included
minor health care decision making. A number of key informants said they only contact the
PGT regarding major or life threatening health care decisions.
I actually think that’s a false issue. I really do. Because if you are a surgeon, proposing a gall
bladder, you darn well better know whether that person can consent, and you darn well
better nd out who can consent. And if you’re a family physician taking care of the patient,
and you’re ordering medications, the same applies.
– Geriatric psychiatrist
6 | Consultation Findings 165
6.1.3 Barriers to Informed Consent
Lack of Time and Resources
42 Many physicians indicated that conversations about medication and treatment deserve,
and require, time. Obtaining informed consent requires the time to make sure health
care professional understands the patient’s views, and the patient understand the medical
information. e importance of these conversations as a cornerstone of good practice was
armed by several directors of care.
43 Particularly in long-term care, an insuciency of time was repeatedly identied as a factor
impeding a physician’s ability to properly obtain informed consent, or a sta member’s ability
to facilitate the consent process, especially where substitute decision makers needed to be
contacted o site. Physicians themselves identied this barrier to consent, as did nurses and
directors of care. Lack of time was identied as a barrier in two ways:
(a) sometimes matters are too urgent (though not an emergency); and
(b) some key informants said that physicians and long-term care sta do not have enough
time to get consent for all medication, given their workload. However, a few physicians
strongly opposed this view.
44 A number of owners or operators of care facilities identied family conict as the most
signicant barrier to informed consent, especially in circumstances where there was no
representative, and a number of siblings were equally ranked under the legislation as TSDM.
ey said sta need to spend a lot of time trying to mediate family disputes, whereas their
sta are not really qualied to engage in this work. Health authorities also identied this
challenge. In contrast, physicians generally said such dynamics were rare, and when they did
arise, the issue could be resolved by meeting as a team of sta and family to discuss the issue,
and nd a good way forward. Social workers play a prominent role in resolving such disputes;
however, not all care facilities employ social workers. Capacity to engage in these challenging
discussions about health care seems to be connected to time and resources.
45 Physicians who noted time constraints as a barrier to obtaining informed consent identied
heavy caseloads as a problem. At least one physician said pay structures for physician billing
do not support them to have sucient time to dedicate to long-term care residents.
We’re trying to be very pro-active because we’ve really run into a lot issues when, particularly
when clients go into the hospital, and now there’s nobody who can make decisions for them,
and they’re going to residential care.
– Nurse
166 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
46 Many informants raised concerns that stang—both composition and number of sta—
posed a barrier to obtaining informed consent, and to good practice generally. Several key
informants advocated for legislated minimum stang levels in long-term care and assisted
living as part of the solution to minimizing anti-psychotic use. All informants who commented
on stang were adamant that stang levels in long-term care facilities were inadequate.
47 A number of health care sta expressed the view that they need external assistance with health
care decision making, particularly where either there is disagreement among family members
of the person living with dementia regarding treatment, or the person living with dementia
appears to have no family.
Paternalism and Lack of Respect for Substitute and Supportive Decision Makers
48 Some comments revealed a view that family members did not have enough knowledge
or experience in order to make decisions about complex medical subjects. One geriatric
psychiatrist identied a need to undermine the “we know best syndrome” that can be a
pervasive in health care. In another interview a psychiatrist indicated that they witnessed
paternalism in practice regularly.
49 At least one lawyer and one social worker identied failure on the part of physicians to
recognize a person’s right to choose to live at risk as an obstacle to good practice. e lawyer
indicated that some professionals, including many judges, are too quick to move to a best
interests approach.
50 One psychiatrist indicated that they thought consent rights of substitute decision makers were
sometimes overridden by the use of involuntary committal procedures for paternalistic reasons.
6.1.4 Advance Planning
51 Many key informants from diverse professional backgrounds indicated that representation
agreements are uncommon, but generally viewed by health care professionals and social
workers as useful documents. Health care professionals would like to see greater advance
planning, long before a dementia diagnosis. Most of the health care professionals we spoke
with say they encourage advance planning for health care decisions, but they feel they are not
When you go into court you are going into [the courtroom of] any old random judge who
may or may not have ever heard of capacity issues, whereas you would expect if it was a
capacity review board, they would be uent with the issue of capacity.
– Lawyer
6 | Consultation Findings 167
the ideal people to provide information on the topic. Several key informants, in particular
social workers, were of the view that health care professionals often did not understand
advance care planning tools well.
52 Social workers and nurses working in community are providing education about representation
agreements and advance planning for health care decision making as part of their work.
53 We are aware of at least one health authority which has a designated sta member whose role
is focused on education of the public and health care professionals on consent and substitute
decision making matters.
6.1.5 Access to Justice
54 If a person does not have the right to make health care and nancial decisions due to a
committeeship order, it can be dicult to retain counsel to challenge the committeeship
because the older person may not have access to funds.
55 If a person living with dementia disagrees with a medication decision, or the determination
of incapacity, some physicians will bring in an ethicist to assist, or refer the matter to an ethics
committee, if available. One geriatric psychiatrist said on occasion he would get a second
opinion regarding incapability to make a medication decision. ere is a desire to minimize
moral distress for all concerned (including sta, family, and the person living with dementia).
56 Key informants from the PGT indicated that where they are committee or statutory property
guardian, and a person living with dementia wishes to challenge their appointment or one of
their decisions as health care decision maker, as a matter of practice the PGT will facilitate
access to independent legal counsel, regardless of the older person’s nancial situation.
57 If an alleged abusive decision maker is the representative, their powers can only be challenged
by going to court. e PGT’s powers to intervene are limited as the PGT cannot be appointed
personal statutory personal guardian, and a court application for committeeship can be costly
and slow—at least several months—whereas the medical issue may require a timely decision.
If they are paranoid, and scared all the time, I mean, you cannot address it just with other
methods. I don’t think living your life in that state for the rest of your life is a good idea.
– Geriatrician
168 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
58 e Seniors First BC Seniors Abuse and Information Line does receive calls regarding health
care decisions and incapability assessments. On at least three occasions lawyers with the Elder
Law Clinic have successfully challenged ndings of incapacity in court.
59 With respect to advance planning, some lawyers are very reluctant to do section 7 agreements
for a person who has some diminished capacity. Although Law Society of BC rules have
changed to permit lawyers to act, and the person may have capacity to create a representation
agreement, they may not have capacity to sign a retainer agreement with the lawyer. e
capacity to contract is a higher standard.
60 Language issues related to dementia or other issues such as stroke recovery can make it
dicult for a person to advocate for themselves.
61 Lack of an administrative review tribunal for health care decisions creates barriers to access
to justice. Relatedly, one lawyer identied lack of knowledge and experience of judges with
respect to mental capacity issues as presenting an access to justice issue. e lawyer pointed to
the value of an administrative tribunal having authority over all guardianship and health care
decision making matters:
62 Condentiality issues can present barriers to access to justice. Courts are open, documents
become public record, and the records are generally not anonymized.
6.1.6 Anti-psychotics, Chemical Restraints and Consent
63 From the perspective of health care professionals—particularly physicians, geriatricians and
psychiatrists who have prescribing authority—there does not appear to be a clear distinction
between the use of anti-psychotics as a form of health care versus the use of anti-psychotics
as a chemical restraint. Half the physicians who commented on the meaning of chemical
restraint considered any prescription of anti-psychotic medications to be health care; however,
when pushed, most acknowledged that the medication could be used as a restraint, especially
in emergency circumstances. Two physicians stated that the use of an anti-psychotic could be
both health care and a restraint at the same time. Only one physician was condent regarding
when the use of an anti-psychotic was health care versus a restraint. Most felt that anti-
psychotic use can be framed as health care treatment if the medication is alleviating suering
in any way, but many informants felt the distinction was a ne line because while intention is
6 | Consultation Findings 169
therapeutic, the impact can be restraint. When the use is purely for convenience or comfort
of others—there is no distress, and the person living with dementia is just annoying people—
physicians agreed that the use is restraint.
64 Regardless of a physician’s view on whether the use of an anti-psychotic was health care or a
restraint, consent processes did not dier for the prescription of anti-psychotic medications as
compared with the provision of other health care in non-emergency situations. Even the two
physicians who expressed an opinion that anti-psychotics were often being used as a restraint
did not make any distinction in consent processes. When made aware of the Residential Care
Regulation (RC Regulation) provisions regarding restraint physicians did not understand how
they could be helpful.
65 ere was very little awareness by physicians of the existence of the RC Regulation provisions
regulating the use of restraints, including any dierences between agreement processes for the
use of chemical restraints versus consent processes for the provision of health care. However,
most facilities, as well as health authorities, do have a least-restraint policy which outlines
procedures.
66 ere was some awareness of the RC Regulation provisions regulating the use of restraints by
non-health care sta, such as by social workers and facility management sta. However, most
of these key informants considered the regulations only applicable to physical restraints, and
had not considered they might apply to the use of anti-psychotics or other medication.
67 All stakeholders were cognizant of their facilities’ “least restraint” policies, with broad
acknowledgement that there had been a vast shift for the better in health care practice in terms
of the use of restraints in recent years. All health care professionals and sta identied overuse
of anti-psychotics as an ongoing issue requiring attention. However, all key informants felt
there had been improvement, if not signicant improvement, in the last ve years, though
there had been little attention to consent practices in relation to use of anti-psychotics.
68 Many health care professionals emphasized that while anti-psychotics have been overused in
long-term care, they can be a very useful form of medication to help relieve distress in some
people living with dementia.
69 e PGT has authority as TSDM to consent to the use of restraints which form part of a
health care treatment plan pursuant to the HCCA, and to agree to the use of adaptive and
Some of the First Nations believe that if you even start talking about death you are inviting
it. So they’re reluctant to go there. They don’t want to use the words. They’re not comfortable
with it. They believe that for people who have crossed over, talking about it can act as a draw.
– Health authority sta
170 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
behavioural restraints under the RC Regulation if the PGT is the committee of person. For
the PGT, if there is no perceived health benet of the restraint to the person living with
dementia, then it is not health care, and so the PGT cannot consent as TSDM. e restraint
provisions of the RC Regulation do not specically name the PGT as having authority to agree
to a restraint.
70 e Seniors First BC Seniors Abuse and Information Line (SAIL) often receives calls
regarding suspected inappropriate use of anti-psychotics which they believe contributed to
deterioration and death, and were provided without the informed consent of the health care
decision maker. Family tend to call SAIL only after the older person has died because they are
concerned about retaliation.
71 Anti-psychotics are not only used within facilities. ey are also used in community, and can
be a means to prolong the ability of people living with dementia to continue to reside at home
with the support of family caregivers, and home and community care.
6.1.7 Patterns Identied Related to Specic Groups
72 Several key informants from health authorities and nursing backgrounds stated that it is
common for Chinese-Canadian families to experience diculties confronting decision
making around end of life or palliative care, instead tending to seek the highest level of
intervention for their family member, despite a health professional’s recommendations to
consider less intrusive or palliative care. Key informants viewed culture in these cases as
impacting on a substitute decision maker’s ability to make decisions in accordance with what
the person living with dementia would have wanted, or in their best interests. Balancing
these cultural considerations with a patient-centred approach to health care was commonly
identied as raising dicult issues.
73 Language issues pose a signicant barrier to consent for non-English speaking families.
Interpreters are not always available or sought. Many informants spoke of relying on available
sta who spoke the language, or other family members to assume the role of interpreter. e
availability of an interpreter does not always remedy this problem. True understanding and
engagement is dicult to gage when interpreters are involved. Interpreter understanding of
medical terms or concepts is not always certain.
854
6 | Consultation Findings 171
74 Two key informants noted that in South Asian and Chinese communities, it is common
for the oldest son to identify himself as the TSDM ahead of the patient’s wife. A few key
informants from a variety of professional backgrounds identied that sometimes families
will insist that the male of the family make the decisions, even where it the daughters who
are providing the care, and have all the information about the person living with dementia,
and their values and wishes. Informants were of the view that given the propensity for health
care professionals and sta to involve wider family groups in discussions, this practice did not
usually preclude female family members from involvement.
75 Key informants from health authorities and social work identied that in some cultures, there
can be a reluctance to talk about death that can pose barriers to decision making. In some
cultures, talking about death can be considered “rude and bad-mannered,” or imprudent.
76 Some key informants from health authorities and with nursing experience on reserves pointed
out that some Indigenous people have a strong distrust of institutions, and white people with
authority. Colonization, and the residential school system in particular, have both damaged
people’s sense of autonomy, and created trauma and fear resulting sometimes in a lack of
ability to engage with the system, and other times in a culture of assent.
77 Indigenous people continue to experience racism in all aspects of health care, which impacts
their ability to participate in health care decision making.
78 In rural Northern communities, there are fewer resources, and so people tend to have inferior
knowledge of their rights. Further, people who are marginalized may make dierent decisions,
value dierent things, and have less social power, and so their choices are sometimes not
respected. And it is harder for people to participate in decision making when they come from
a community with limited internet, and where people cannot aord a telephone. On the ip
side, a family physician key informant noted that older people in these communities are often
less isolated, and more likely to have neighbours or community members who know them well
enough to act as TSDM.
6.1.8 Mental Health Act and Care Facility Admissions Procedures
79 ere was agreement among the geriatric psychiatrists we spoke with that dementia is a
mental disorder, and so involuntary committal under the Mental Health Act (MHA) can be
All of a sudden people were doing things for him, which increased his anxiety. They started
increasing the medication , and I learned that the medication can cause strokes. He has
vascular dementia driven by cardio-vascular disease.
– Family caregiver
172 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
appropriate where the criteria under the MHA is met. However, there is a lack of clarity
around when use of the MHA is appropriate for people living with dementia. Physicians and
Ministry of Health sta conrmed that guidelines do not exist to support practice.
80 e MHA’s “extended leave” provisions are currently being used as a means of admitting a
person with a mental disorder, including dementia, into a long-term care facility, although
this approach seems to be only used as a last resort. e overwhelming view is that the use of
the MHA in this way is problematic but necessary in some circumstances where there is no
representative or committee of the person, because TSDMs cannot consent to personal care
matters, including admission to a care facility.
81 A person living with dementia might get involuntarily committed in circumstances where
they were considered to be aggressive and dangerous in long-term care, and the substitute
decision maker would not consent to medication.
82 Many stakeholders are aware that legislation with respect to admission to care facilities is
forthcoming, but are not familiar with the details of the legislation, and therefore could not
comment on its advantages, or possible disadvantages. Many informants were hopeful that
the new legislation would address a gap in consent law, thereby resulting in fewer involuntary
committals.
83 ere was some suggestion that the MHA is being invoked to relieve family members of
stressful decision making.
84 e use of the MHA is often for a short term transitional period, while the person settles
into the new care facility. e use may be for a few weeks or a few months if the diagnosis is
dementia, and there is a no other psychiatric disorder.
85 One lawyer expressed concern regarding an incident where use of the MHA was being
threatened to get the older person to consent to facility placement. He could not comment on
how common this practice was.
I was on Statin drugs, and if you do any research, they tend to add to confusion… the GP,
the drugs he gave me, there are studies that they conict with my condition. He never even
knew about that.
– Person living with dementia
6 | Consultation Findings 173
6.2 FOCUS GROUPS WITH COMMUNITY STAKEHOLDERS
6.2.1 Health Care Consent Practice
Health Care Provider Practice
1 Most people living with dementia and family caregivers reported that their specialist, often
a geriatric psychiatrist, provided lengthy appointment times that allowed them to ask all the
questions they needed to ask about medication and treatment options being considered (up
to an hour). A lengthy appointment time was considered crucial to decision making and a
hallmark of good practice.
2 Comments regarding general practitioners were mixed. Some people reported that they were
rushed during their appointments, and there was not enough time to pose questions. Some
people, especially people who had maintained the same physician for a long time, said their
physician made time for them, granting longer appointments. ese people characterized
their physician as an important ally in care.
3 Family caregivers of adults with intellectual disabilities who are now living with dementia
expressed condence in their role as supportive or substitute health care decision maker. ey
generally had many years of experience supporting the person living disabilities or making
decisions, involving them to the extent possible, and monitoring after changes occurred to gage
if and when a decision needed to be revisited. ey were skilled at reading non-verbal cues,
and understanding unique styles of communication. ey also often took their responsibility
to engage the person living with dementia, and advocate for them, very seriously.
4 Although some people said physicians were very helpful in answering questions about
medication, others reported that physicians do not have accurate knowledge about the
relevant medication. People reported having to spend a lot of time independently researching
side-eects, drugs interactions, and alternative online—as well as the as eects of drugs taken
for other conditions on memory and cognition—in order to acquire adequate information
for health care decision making. Some people reported not being told about side eects, or
how long to take a drug. In general people felt that although specialists were very helpful and
knowledgeable, general practitioners did not have enough knowledge about dementia, or the
medication they were prescribing or monitoring.
It’s tiring. I have to do all the research myself. And when I ask for particulars, they can‘t nd it.
And when they can nd it, the log is private, even when it’s my own mother.
– Family caregiver
174 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
5 Family caregivers of people with intellectual disabilities said that sometimes the health
provider’s presentation of options for treatment and care betrayed a lack of respect for the
value of the lives of people who have signicant lifelong disabilities.
6 A number of caregivers talked about employing “therapeutic bbing” in order to get the
person living with dementia to accept services or take medication. is appeared to be in
circumstances where the dementia had progressed, but a person still had some capacity. One
caregiver spoke of employing therapeutic bbing because sta required a medication that his
mother would not agree to.
Involving Substitute Decision Makers and Family
7 A number of stakeholders were the representative under a representation agreement. None
were committees. Most people found the representation agreement to be a positive in terms
of clarifying who within the family had authority as substitute decision maker for health
care. Most people found they didn’t need a representation agreement. ey found that sta
recognized children and spouses as health care decision makers when they should. e
challenge was more the issue of the extent of involvement and communication, particularly
once the person living with dementia resided in long-term care.
8 Most people reported that physicians treat the person living with dementia and the family
caregiver as a team. Some dedicated part of the appointment time to meeting alone with the
family caregiver, and most people characterized this activity as for the purpose of getting the
“caregiver perspective”, rather than for obtaining consent. No one was critical of this practice.
One person found hospitals were less welcoming of the team relationship, recalling being in
the Emergency Department of a Hospital, and being told “Patient only.” He had to insist on
bringing in his wife.
9 A lot of the comments by family caregivers and people living with dementia focused on the
decision making dynamic between them. Both caregivers and people living with dementia
often described health care decision making as a collaboration. is was especially true for
couples who had been together for most of their adult lives. All people living with dementia
who had family caregivers in their lives attended appointments with their caregivers, in part
because most people living with dementia required the family member to drive them to
appointments. ey also welcomed assistance in recalling what was said during appointments.
The doctors are not trained on Alzheimer’s. You become a third person, and they turn to the
family if they are present to discuss you like you are an object. It is very dehumanizing.
– Person living with dementia
6 | Consultation Findings 175
10 Many people who were the substitute decision maker for someone living in long-term care
characterized the role of a substitute decision maker as a kind of advocate. e work is time-
consuming and overwhelming. It requires a great deal of vigilance because the sta are not
always keen to communicate with family members, and get consent for medication decisions.
A few caregivers described care facility sta as hostile.
11 In long-term care, many family caregivers found it dicult to get information on what
medication the person living with dementia was taking—let alone participate in decision
making—even where they had a representation agreement in place appointing them as health
care decision maker. Caregivers spoke of asking for information, and not being provided
with answers, and resorting to asking to see the resident chart, which they would be told was
condential information such that they would be required to le a Freedom of Information and
Protection of Privacy Act request to access any the information contained in the chart.
12 One family caregiver reported that the only reason she received information about her parent’s
medication was that she was also the attorney under a power of attorney, and so she received
bills from the long-term care facility’s pharmacy regarding medication.
13 People often discussed nding out about medication changes after the fact, sometimes only
at a care conference many months down the road. A number of family caregivers commented
on over-medicating with laxatives and suppositories with caregivers reporting that allowing
them more time, and making dietary changes, seemed like better, less invasive solutions, but
that sta went straight to the drug solution without consulting family.
14 ree family caregivers reported very positive experiences, and excellent communication, with
long-term care facility sta. Two of them were caring for someone living in a private facility
at fees of $9,000 and $10,000 a month.
Engaging the Person Living with Dementia
15 Some people living with dementia commented that they needed more time to process
information and get answers to their questions because of the impact of dementia on their
cognitive abilities. Rushing can cause anxiety, and makes it hard for them to participate, creating
a dynamic where it is easier for family caregivers to take over the conversation. Caregivers were
equally aware of how negatively rushing impacted health care decision making.
When someone’s dicult in the system, they put a purple dot on your chart. They’re now
doing that with caregivers.
– Non-prot
176 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
16 Although capacity is variable, and many people with dementia have very good days, family
caregivers reported that it is not possible to plan medical appointments to coincide with
periods of great clarity. ey must schedule medical appointments in advance.
17 Some people living with dementia shared stories of well-meaning family members trying to
take over decision making while they still had capacity. ey emphasized how important it is
to ask how you can help, and not try to control them. Few people reported this dynamic, but
when it did happen it was very upsetting.
18 A few people living with dementia didn’t seem to appreciate they had choices. ey just
took the medication their physician prescribed. A few caregivers said their parent would do
whatever a doctor suggested. As with key informants, they identied a culture of compliance
in their parent’s generation, and great deference to physicians.
19 A few people reported that the physician would look to the family caregiver to make decisions,
and that they had to educate the physician to include the person living with dementia.
20 A few caregivers reported that it is harder to involve the person living with dementia in health
care decision making when they are in denial that they have dementia.
6.2.2 Barriers to Informed Consent
21 Family caregivers identied sta turnover in long-term care as a barrier because staying
involved in decision making is linked to good relationships with sta.
22 For a number of family caregivers, changing jurisdictions resulted in challenges, especially
where they moved after a diagnosis, and capacity had diminished such that it was no longer
possible to get a representation agreement.
6.2.3 Anti-psychotics, Chemical Restraints, and Consent
23 Family caregivers seem to have a basic understanding of anti-psychotics, and reported the use
of anti-psychotic medication in both community and long-term care. Family caregivers said
It is a struggle. You have to speak up, ask questions and challenge. But it is overwhelming.
– Family caregiver
6 | Consultation Findings 177
the drugs stabilize mood and calm aggression such that it is possible to keep the person living
with dementia at home for a longer period of time.
24 With respect to long-term care, family caregivers shared many stories of people with dementia
receiving drugs without consent of the substitute decision maker, including anti-psychotics
and tranquilizers, and of sta being very resistant to either discontinuing the drugs, or
facilitating dialogue with the physician over whether medication ought to continue.
25 A number of people reported they were told by sta that all residents would be put on the
same medication on admission, with one goal being to calm the residents at night when
stang levels were lower.
26 One caregiver whose spouse had been diagnosed a year ago disclosed he was secretly crushing
into his wife’s food anti-psychotic medication she was refusing to take. However, he indicated
she was fully mentally capable to make her own decisions, and attends many medical
appointments on her own. He said two nurses recommended sneaking the medication into
her food. e medication “makes life bearable.” He indicated that previous to her dementia
she has been a calm person, but that now she swears, and gets angry often.
27 Some family caregivers felt that the person living with dementia was being over-medicated
with an anti-psychotic because the sta did not take the time to understand what the person
was communicating, and were too quick to label someone aggressive or resistant to treatment.
One family caregiver reported that her father would speak to sta in his mother tongue, which
they did not understand, thereby increasing his frustration. She felt he was not aggressive, but
rather frustrated because they did not understand him. She said she was willing to interpret
but sta would not involve her, and tried to keep the family away. Another family caregiver
told us that her mother’s habit of swatting her arm was labelled aggressive, whereas she was
just trying to communicate through gesture because she was non-verbal.
6.2.4 Mental Health Act and Care Facility Admissions Procedures
28 Two caregivers shared confusion about involuntary committal under the Mental Health Act.
Both women were spouses whose husbands had been involuntarily committed. ey did
not understand why there was a need for committal. ey both said they were very involved
in care, and readily available, as well as compliant with doctor recommendations regarding
I still feel like, you know, we’re the ones that still have to make the call. I think we have a duty to
inform them and get their input, hear their input, but not to ask for their consent.
– Physician
178 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
medication. Both visited their spouse every day for hours to assist with meals, and other facets
of care. One of the women felt she was being pressured into accepting involuntary committal
without being provided with an explanation as to why this approach would enhance her
husband’s care. For both of them the experience was traumatic.
29 None of the caregivers we spoke with whose spouse had been involuntarily committed were
provided with any rights information regarding how to challenge the committal, or a referral
to legal resources.
6.3 SUMMARY
Below we summarize the 114 issues emerging from consultation. In order to support thinking about
concrete recommendations for change, we group the issues according to whether they indicate primar-
ily ndings which:
1. Relate to practice and practice support, and lack of compliance with, or enforcement
of, the law;
2. Suggest gaps in legislation, or a need for law reform; or
3. Point to lack of knowledge of the law, and a need for enhanced training, professional
development, or public legal education.
6.3.1 Findings Related to Practice
Getting Consent
Time for conversations about care: Informed consent requires many conversations about care, values,
and options, and often there does not seem to be enough time to have these discussions. is is espe-
cially true for people living with dementia, whose capacity may be compromised if they are rushed
or stressed.
Health care consent: Physicians and other health care sta are often not getting informed timely
consent under circumstances where they are legally obligated to do so. Many people working in long-
term care do not think that the current long-term care environment permits practice consistent with
Because I think sometimes things get lost. I think when we rely on say the adult child to relay
things to the wife we don’t know what they’re relaying, or even that they have the vocabulary.
Maybe they did not grow up in Canada, and they didn’t learn the word for ‘advanced kidney
disease’ in their language. So I think we’re at risk of losing some things.
– Social worker
6 | Consultation Findings 179
the law, due to a lack of time and resources, including the lack of onsite presence of the physician, which
appears to be related to the billing model for physician care. Family caregivers often feel excluded from
decisions about medication in long-term care. However, the issue of consent does not appear exclu-
sively reducible to structural barriers. Many health care professionals don’t think they should have
to get consent for every medical intervention—from a legal, ethical or practical standpoint. Some
physicians working in community do not have enough knowledge of the medication to support the
informed consent process. ere appears to be a lack of clarity regarding the role of nursing profession-
als in facilitating the consent process for health care provided in long-term care by physicians.
People with no decision maker: ere is likely a signicant population of people living with dementia
living in long-term care who have no health care decision maker. For these people, the physician and/
or the health care team are often making decisions.
Power dynamics: Physicians have a tremendous amount of power—whether intentionally or not.
Some people:
• Do not know they can make a choice inconsistent with the physician’s recommendation;
• Are afraid of retribution if they resist the physician’s approach;
• Do not understand their legal rights with respect to health care; or
• Feel signicant deference toward the physician that undermines their decision-
making autonomy.
Chemical Restraints and Anti-psychotics
Chemical restraint: Within the medical community, there is not a consistent understanding of what a
chemical restraint is. Generally, physicians do not turn their mind to the concept, and rather consider:
is this medication the appropriate intervention given all the circumstances?
Anti-psychotic use: Within long-term care, all health care professionals recognize the importance of
minimizing anti-psychotic use, believe a reduction in use has occurred in recent years, and feel there is
more work to be done in this area. At the same time, many key informants emphasized that anti-psy-
chotics can be an appropriate intervention for alleviating distress in people living with dementia. Most
health care professionals do not consider the use of anti-psychotics by people living with dementia as
a form of restraint, except, when pressed, if use was strictly for sta convenience.
I have to go there with the list of questions ahead of time otherwise I forget. So I
prepare in advance.
– Person living with dementia
180 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Communities Facing Particular Barriers to Consent Rights
Indigenous people experience signicant additional barriers to health care consent as a function of
colonization, ongoing racism, and lack of services within their communities.
Language interpretation can be crucial to health care consent; however, professional language inter-
pretation is always not available, particularly in private and contracted long-term care facilities.
A number of hearing and speech issues can result in poor incapability assessment, and lack of
informed consent, as well as limit access to justice. Hearing and speech professionals need to under-
stand mental capacity better. Other health care professionals require better understanding and prac-
tice with respect to recognizing hearing and speech issues, and responding appropriately to provide
assistance in this area.
e Mental Health Act is sometimes being used inappropriately with respect to people living with
dementia, sometimes due to a lack of respect for, or willingness to consult with, substitute decision
makers. e Act may be being mis-used in part due to a legal gap that may be remedied by the imple-
mentation of the care facility admission provisions.
6.3.2 Legal Issues and Law Reform
Chemical Restraints and Anti-psychotics
Chemical restraint regulations: ere is very little knowledge and application of the RC Regulation
to circumstances involving a chemical, rather than a physical, restraint. Health care professionals do
not appear to turn their mind to the concept of chemical restraint when administering medication that
could be restraining, such as anti-psychotics.
PGT and restraint: e PGT is not specically named in the RC Regulation as able to agree to the
use of a restraint. erefore, the PGT cannot agree to use of a restraint unless it is committee of person
under the Patients Property Act, or a TSDM under the HCCA where the restraint is a component of
health care treatment. erefore, if a person has no committee, and no relatives, there is no person with
legal authority to consent to certain kinds of restraint.
There’s very little knowledge about the law in terms of consent... so education would be really
helpful. It’s very much needed I think.
– Nurse
6 | Consultation Findings 181
Access to Justice Issues
Access to Legal Aid: For people living with dementia, and other people who may have reduced mental
capacity, access to legal assistance to challenge a nding of incapability, or a specic health care deci-
sion, is minimal.
Lawyers & Advance care planning: Lawyers can sometimes be reluctant to take on a client for the
purposes of drafting a representation agreement given the time it takes to assess incapability, and a lack
of certainty in professional conduct rules regarding entering into a retainer agreement with a person
who has capacity issues.
Substitute and Supportive Decision Making
Although the legal framework generally provides for a single decision maker, heath care decision
making is a very collaborative activity. Sometimes it involves the person living with dementia and
another person they trust. Sometimes it involves a larger network of people. Although family caregiv-
ers do not use the term “supportive decision maker”, many of them appear to be engaged in supportive
decision making with the person living with dementia. Where health care professionals are attentive
to obtaining informed prior consent, they often approach decision making as a collaborative exercise
engaging family.
TSDM list: e equal weighting of siblings under the TSDM list within the HCCA can pose chal-
lenges when adult children have divergent views about health care. It is often health care professionals
and sta who must sort out disputes, and often they are not comfortable with addressing these situa-
tions. ere is a common misperception that the PGT has a mandate to intervene to resolve disputes
among equally ranked family members. e PGT’s dispute resolution tools are either to authorize
someone as TSDM, or make the decision as TSDM.
182 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
6.3.3 Gaps in Knowledge of the Law
Health care Professionals and Sta
Professional development and education: Across all professionals and sta involved in health care
decision making, there is a need and desire for greater ongoing professional development with respect
to health care consent law in BC.
Admission and consent to treatment: ere is confusion regarding when consent is required in long-
term care. Some health care sta clearly think admission constitutes consent to all treatment recom-
mended by the physician.
Incapability assessment: One barrier to informed consent is that many health care professionals
either do not know how to conduct an incapability assessment, or do not conduct them. Also, it
appears that sometimes health care professionals incorrectly rely on the opinion of family members
regarding capacity. As a result, it is impossible to know how much a person can participate in health
care decision making, and whether it is appropriate to turn to a substitute decision maker.
Medical Order for Scope of Treatment (MOST) Form: While useful as a tool for supporting care
discussion and documenting preferences, there is some confusion that the form is a legal agreement
or an advance planning instrument.
PGT role: Among physicians, long-term care sta, and operators, there is confusion about the
mandate of the PGT and its role in health care decision making. ere is inconsistent practice in
terms of when health care professionals or operators appeal to the PGT for assistance, and a lack of
understanding regarding what kinds of assistance the PGT can provide.
Substitute Decision Makers and Family
Community education: Given low take up of advance planning tools, it seems that the general public
lacks knowledge of available tools, and of the importance of planning for health care decision making
in advance.
Understanding substitute decision making: Some substitute decision makers do not understand
their responsibilities. In particular, they do not appreciate that they are being asked to consider what
that person would want, rather than make the decisions based on their own desires and wishes, or even
resort to best interests—at least in the rst instance. Substitute decision makers may also require more
knowledge of frailty and end of life care. Health care decision making is a challenging and important
role for which people are inadequately trained—and yet also asked to assume when they are in a time
of crisis: caring for a person living with dementia, and supporting someone along the journey to end
of life, can be fraught with loss.
I think certainly things have gotten better in my 25 years…but I think there’s a belief out there that still
exists, not among everybody, but still is out there, that once you cross the threshold into care, that you
kind of, for whatever reason, lose your citizenship rights at the door.
– Health authority sta
7 | Discussion and Recommendations 183
CHAPTER 7
Discussion and Recommendations
is chapter brings together legal research and consultation ndings for discussion of recommenda-
tions aimed at enhancing compliance with, or improving, health care consent law in BC. Some of the
issues canvassed below emerged exclusively from our review of the law; some issues were identied
through consultation; many came up in both contexts. We focus on consultation ndings identied
in Part 3 of Chapter 6 (above), where we distill the 114 issues emerging from consultation down to
23 ndings.
is chapter is divided into four parts. Recommendations aim to:
1. Create greater clarity and consistency in the law;
2. Support best practice of health care providers with respect to health care consent;
3. Address systemic barriers to informed consent; and
4. Enhance access to legal information and representation regarding health care
consent rights.
184 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
7.1 CREATING GREATER CLARITY AND CONSISTENCY IN THE LAW
BC is one of the few provinces in Canada to have developed a comprehensive health care consent stat-
ute that codies the common law doctrine of informed consent. e Health Care (Consent) and Care
Facility (Admission) Act (HCCA) claries to the rights and responsibilities of health care providers and
temporary substitute decision makers for health care. e statute conrms the principle that decision
making autonomy is paramount, and that neither a best interests approach, nor paternalist thinking, is
relevant to the decision making of adults who are capable of making their own health care decisions.
BC is also one of the only jurisdictions in the world to have developed a framework for supported
health care decision making, through the Representation Agreement Act (RAA).
e HCCA provides a solid foundation for health care consent law in BC. e Act:
• Imposes an obligation on health care providers to obtain timely informed consent prior
to treatment;
• Codies the right to revoke consent;
• Starts from a presumption that all adults are mentally capable of making their own health
care decisions;
• Includes a standard for capacity to consent to health care;
• Requires health care providers to consider whether an adult has capacity as part of the
consent process;
• Delineates the kinds of information a health care provider is required to provide such that
consent will be informed;
• Codies the right to ask questions, and receive answers about proposed health care;
• Sets out exceptions that permit emergency treatment and assessment without
prior consent;
• Develops a scheme for substitute decision making where an adult does not have capacity
to make a decision regarding proposed treatment; and
• Creates a mechanism for documenting instructions regarding possible future treatment in
the form of an advance directive.
In this rst part of Chapter 7 we identity a number of legislative amendments which aim to:
For a lot of older adults, they feel they are not being heard or... and often it’s also people who
feel that they have some capacity, but they have been denied their voice because there may
have been a nding of incapacity, or a condition like dementia.
– Lawyer
7 | Discussion and Recommendations 185
• Clarify or enhance the rights of people living with dementia and their substitute decision
makers to participate in health care decision making; and
• Remedy inconsistencies between various statutory provisions which are relevant to health
care decision making for people living with dementia.
Most of the recommendations in Section 7.1 relate to the HCCA, the Community Care and Assisted
Living Act (CCAL Act), and the Residential Care Regulation (RC Regulation); however, we also make
recommendations that impact the Mental Health Act (MHA), the RAA, the Patients Property Act (PPA),
and the Adult Guardianship Act (AGA). e recommendations below build on the robust framework
of rights and responsibilities established in the HCCA, and aim to bring health care decision making
legislation in BC in better alignment with the principles found in the United Nations Convention on
the Rights of Persons with Disabilities (CRPD).
855
Section 7.1 is divided into two sections which address:
1. Health care decision making rights and responsibilities; and
2. Use of restraints in long-term care
7.1.1 Health Care Decision Making Rights and Responsibilities
Recognize that Capacity is Decision-Specic
e concept of mental capacity is key to health care consent law in BC. Capacity is presumed,
856
and
a health care provider must consider whether a person has the mental capacity required to consent to
treatment before the adult may consent to, or refuse, proposed health care.
857
e capacity standard set
out in the HCCA requires the adult to demonstrate understanding of “the information a reasonable
person would require to understand the proposed health care and to make a decision,”
858
as well as
awareness that the information applies to themselves. e information an adult must demonstrate
understanding of includes information about:
(i) the condition for which the health care is proposed,
(ii) the nature of the proposed health care,
(iii) the risks and benets of the proposed health care that a reasonable person would expect to be
told about, and
(iv) alternative courses of health care.
859
The rst two appointments he
just ignored [my wife]. Now
[the physician] is paying
attention. We’ve been married
50 years, known each other
54. We are not by ourselves;
we are working together.”
– Person living with
dementia
186 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
As discussed throughout this report, research indicates that capacity is both vari-
able and decision-specic. In particular, the ability of people living with dementia
to understand information, and apply it to themselves, can vary from day to day, and
even within a given day. Further, people may have capacity for some decisions, and
not others.
Both the common law and legislation set out various capacity standards with respect
to dierent types of decisions. Capacity to consent to health care treatment, hinging
as it does on a person’s ability to understand information relevant to that particular
treatment decision, can also vary depending on the complexity of the information
relevant to a particular decision. However, while the HCCA uses person-centered
language, generally referring to “a person who is (in)capable of giving consent”, rather
than to a “capable person” or an “incapable person”, the statute does not clearly recog-
nize the variability of capacity depending on the nature of the decision in question.
e HCCA contains two provisions requiring conrmation and redetermination of
capacity, which recognize that capacity is not a xed state, and can vary. e Act
requires health care providers to:
• Conrm incapacity closer to the time when treatment is to begin
(21 days); and
• Make a new determination regarding capacity if, at any time, a health care
provider has reasonable grounds to believe the adult may be capable of
giving or refusing consent to health care.
860
Both Project Advisory Committee members and a number of key informants
conrmed that good practice requires timely consideration of a person’s capacity.
However, many stakeholders noted that incapability assessments do not occur as
often as they should, and that health care providers often presume lack of capacity
for people living with dementia. ese patterns highlight the importance of under-
scoring the variability of capacity depending on what a person must be able to under-
stand in order to make a particular health care treatment decision, and the timing of
the health care decision. Although the capacity standard for health care treatment
decisions in the HCCA links capacity to understanding the proposed treatment, the
statute would be improved by stronger language recognizing that capacity can vary.
Such language can be found in Prince Edward Island’s health care consent statute.
e Consent to Treatment Act states:
Capacity depends on treatment
(3) A person may be incapable with respect to some treatments and capable
with respect to others.
Capacity depends on time
(4) A person may be incapable with respect to a treatment at one time and
capable at another.
861
1
The Health Care (Consent)
and Care Facility (Admission)
Act should be amended to
recognize that capacity can
vary in the following manner:
• A person may be
incapable with respect to
some decisions regarding
treatment, and capable
with respect to others; and
• A person may be
incapable with respect to a
treatment at one time, and
capable at another.
187
Identical language is also found in Ontario’s Health Care Consent Act.”
862
In 2004,
the Law Reform Commission of Manitoba recommended the adoption of similar
language into its consent to treatment statute.
863
We recommend a similar provision
be added to the HCCA in order to enhance recognition of the capacity of people
living with dementia to participate in health care decision making even where they
may lack capacity for some decisions.
Incorporate Supported Decision Making into BC’s Health Care
Consent Statute
Both legislation and consultation conrmed that in non-emergency situations health
care decision making is a process that requires dialogue. Some people living with
dementia may not be able to make their own health care decisions independently,
or may have communication diculties; however, they may still have the capacity to
meaningfully participate in health care decision making, particularly if they receive
support from a person they trust.
Supported decision making, which we discuss at greater length in Chapter 3, is a
concept with roots in disability rights advocacy. While each supported decision
making relationship is tailored to address a person’s unique needs for support, our
research
864
indicates that supportive decision makers “support” a person to:
• Understand the issues involved in a decision;
• Understand the consequences of a decision;
• Access the appropriate assistance or information to help them make a
decision; and
• Express their views, by acting as interpreter where needed.
A supportive decision maker can help others to:Truly hear or understand a person
who requires support;
• Appreciate the person’s needs, rights, values, preferences and goals; and
• Respect the person’s autonomy, dignity and wisdom—in other words,
help prevent discrimination and bias linked to disability.
BC law recognizes supported decision making for health care through the RAA.
865
Some people living with dementia may have created a representation agreement for
supported decision making; others may not have drafted an agreement, but still make
decisions with the support of people they trust.
RECOMMENDATION 1
188 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Two legal developments render a discussion of supported decision making for health care particularly
timely in 2018. Firstly, recent amendments to various BC laws related to substitute decision making
(RAA, Power of Attorney Act, HCCA, PPA) have added a duty to consult with, or involve, the person for
whom decisions are being made. In this sense a nding of lack of capacity to make a specic decision
no longer means an absolute loss of the right to participate in health care decision making—whether
or not the adult has formally appointed a supported decision maker by way of a representation agree-
ment. e duty of a substitute decision maker to consult or involve the adult in decision making
highlights the importance of ensuring adults with diminished capacity are supported to participate in
decision making.
Secondly, in 2010 Canada ratied the CRPD. Article 12 of the CRPD requires:
2. States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis
with others in all aspects of life.
3. States Parties shall take appropriate measures to provide access by persons with disabilities to the
support they may require in exercising their legal capacity.
866
e United Nations Department of Social and Economic Aairs considers these provisions to call for
supported decision making, holding out the BC RAA as providing a model approach.
867
In spite of the above developments, there remains limited reference to supported decision making
in the HCCA. Currently the only reference to supported decision making in the HCCA is section
8, which states that the health care provider “may allow the adult’s spouse, or any near relatives or
close friends, who accompany the adult to help the adult and oer their assistance to understand or
demonstrate an understanding” of the information relevant to the proposed health care. e permissive
language of the section does not establish or conrm the right to supported decision making for health
care. A representative’s authority as a substitute decision maker, but not as supportive decision maker,
is recognized under the HCCA.
868
Indeed “consent rights”, which are set out in section 4 of the Act, apply only to an “adult who is capable
of giving or refusing consent to health care”.
869
e HCCA states:
4 Every adult who is capable of giving or refusing consent to health care has
(a) the right to give consent or to refuse consent on any grounds, including moral or
religious grounds, even if the refusal will result in death,
(b) the right to select a particular form of available health care on any grounds, including
moral or religious grounds,
(c) the right to revoke consent,
(d) the right to expect that a decision to give, refuse or revoke consent will be respected, and
(e) the right to be involved to the greatest degree possible in all case planning and
decision making.
Bearing in mind the above discussion of supported decision making, it is not clear why “the right to be
involved to the greatest degree possible in all case planning and decision making” noted in subsection
7 | Discussion and Recommendations 189
(e) should be limited to an adult who is capable of consenting to treatment. People
living with dementia who are not able to understand all the information relevant to a
health care decision may still be capable of sharing information about their values and
wishes regarding care, or explaining how they feel when they are taking certain kinds
of medication, particularly if they have access to support with communication from
a person they trust. People living with dementia may have knowledge that is vital to
determining the best course of treatment.
Our consultation with people living with dementia and family caregivers conrmed
some people use supported decision making; however, people tend not to use the
expression “supported decision making” to describe their relationships. Many couples
indicated they make decisions together, and say they have the most positive experi-
ences of care when health care professionals and sta recognize the value of their
supportive relationships. Family caregivers also described decision making dynamics
with their parents which appear to be supportive. However, while some stakeholders
discussed creating representation agreements, no stakeholders indicated they had
created a representation agreement for supported, as opposed to substitute, deci-
sion making.
People living with dementia expressed frustration about circumstances in which the
support of the person they trusted was not available because health care sta had
separated them in order to provide care or assess health care needs. Family caregivers
indicated that one of their key roles in health care decision making is helping to make
sure people living with dementia are engaged in the health care decision making
process to the best of their abilities.
A number of Project Advisory Committee members cautioned that people the adult
should be able to trust can sometimes be controlling or abusive, which can be the
case with substitute decision makers. Others expressed concern family caregivers
connected to the Alzheimer Society of B.C. may be more aware of their responsibil-
ities than others. Certainly, it is possible some family caregivers are not generally as
responsible about supporting the voices of person living with dementia to be heard.
However, such dynamics do not downplay the value of including supportive caregiv-
ers. Indeed other Committee members said it is far more common for professionals
and service providers to be controlling or abusive.
As with substitute decision making, health care professionals and sta must under-
stand the role of supported decision makers. Sta must be attentive to power dynam-
ics, and signs of abuse or undue inuence. e risk of abuse is not an adequate
rationale for limiting access to support where the adult has not created a repre-
sentation agreement. A representation agreement for supported decision making
may reect the clearest expression of authority; however, based on our consultation
ndings, awareness of this option is extremely limited. Information from key infor-
mants indicates that representation agreements are not widely used in health care
settings. However, health care professionals, people living with dementia, and family
I think it has to do with
the power, this notion that
you just don’t question
whatever the doctor tells
you. You just accept.
– Social Worker
2
The Health Care (Consent) and
Care Facility (Admission) Act
should be amended to state
that every adult, regardless
of capacity, has the right to:
• Receive support in
decision making provided
by a family member or
friend whom they trust, if
they choose to do so; and
• Be involved to the
greatest degree possible
in all case planning and
decision making.
190
caregivers all characterized the engagement of supportive (and non-abusive) family
and friends as best practice.
As a result, we recommend the HCCA be amended to codify the right of every adult,
regardless of capacity, to receive support in health care decision making, and to partic-
ipate in health care decision making to the greatest extent possible. Such provisions
will bring the HCCA in better alignment with supported decision making values, and
with the requirements of the CRPD. e United Nations and others have recognized
BC’s leadership in the area of supported decision making through the RAA. Law
reform of the HCCA to recognize supported decision making takes this work further.
However, it is important that legislation be clear that it up to people to choose to
make use of support if they wish to do so; the provision should not establish the right
of family and friends to provide support.
Recommendation 2 does not impact rights and responsibilities under the RAA. For
people who have empowered a supportive decision maker through a representation
agreement, Recommendation 2 would protect the right of the adult to access the
support of other people. We are also not recommending that informal supportive
decision makers under the HCCA be accorded rights and responsibilities parallel to
those under the RAA. Rather, the goal of Recommendation 2 is to enhance access to
supported decision making for people living with dementia who would:
• Be able to participate in health care decision making only if they have
access to support from a trusted person; or
• Have enhanced capacity to participate in decision making if support
were provided.
Section 2 of the HCCA excludes people who have been involuntarily committed
under the MHA from the benet of any of the health care consent rights provided for
in the HCCA, in terms of psychiatric treatment, regardless of capacity for health care
decision making.
870
Under the MHA consent to psychiatric treatment authorized by
the director of a designated facility is deemed to have been provided by the adult.
871
We spoke with a number of stakeholders regarding involuntary committal of people
living with dementia. While we have not conducted a thorough review of mental
health law and practice, it is not evident to us why older people living with dementia
who have been involuntarily committed should not be accorded the rights described
in Recommendation 2. e right to participate in health care decision making and
case planning, and to receive support in order to participate in such decision making,
could co-exist with ultimate decision making authority resting with the director.
erefore, we recommend the Government of BC consider amending the HCCA so
RECOMMENDATION 2
3
The Government of BC should
consider amending the Health
Care (Consent) and Care Facility
(Admission) Act such that the
right to support, and the right
to participate in case planning
and decision making, apply
to all adults, including adults
currently excluded by the
combined impact of Section 2
and the deemed consent provi-
sions of the Mental Health Act.
191
that Recommendation 2 does not result in further inequality of health care decision
making rights as between people who have been involuntary committed and all
other adults.
Clarify the Right to Consent to Medication in Long-Term Care
Many of the concerns stakeholders articulated regarding health care consent practice
revealed some confusion regarding what can legitimately be consented to in advance
in long-term care via a care plan, such as PRN orders
872
for medication, and which
kinds of treatment require specic prior informed consent. Care plans are mandatory
for people admitted to long-term care for a period of time longer than 30 days, and
must include medication.
873
A plan for minor health care for up to twelve months is
included in the denition of health care under the Act.
874
Eectively this means the
care plan operates as documentation of advance consent to certain forms of treat-
ment and care.
ere is an inconsistency as between the HCCA and the RC Regulation in terms of
whether consent is required for all medication and treatment provided under the
care plan. Although the HCCA clearly states that informed prior consent is required
to administer medication in non-emergency circumstances,
875
the RC Regulation
states that the care plan must be developed with the participation of the resident or
the substitute decision maker “to the extent reasonably practical”.
876
e language of
participation “to the extent reasonably practical” is inconsistent with the unequivocal
right to informed prior consent to treatment, and creates confusion, as an exception
for urgent treatment already exists. A care plan is intended to guide care over the long
term; the notion that it would not be practical to consult with the resident or the
substitute decision maker at any point is troubling.
Under the RC Regulation, care plans include much more than minor health care.
ey must include a nutrition plan, a recreation and leisure plan, and other topics
depending on the needs of the particular resident, for example, a falls prevention plan
for a resident who may be prone to falling.
877
In terms of medication and treatment,
the RC Regulation states the care plan must include:
RECOMMENDATION 3
We understand that there’s this thing called consent, and I tend to think
of it if there’s a blood transfusion or a surgical procedure.
– Physician
4
Section 81 of the Residential
Care Regulation should be
amended to clarify that
informed consent of the resi-
dent, or the substitute decision
maker if the resident does not
have capacity to consent, must
be obtained prior to nalizing
or amending any aspects of
the resident’s care plan that
relate to health care treatment.
192
(a) a plan to address
(i) medication, including self-administered medication if approved under
section 70 (4)[administration of medication],
(ii) behavioural intervention, if applicable, and
(iii) if there is agreement to the use of restraints under section 74 (1)
(b) [when restraints may be used], the type or nature of restraint and the
frequency of reassessment.
878
Although a plan for minor health care and a care plan are not equivalent terms,
the language of both statutes indicates that care plans must include the plan for
minor health care for the resident, as well as any agreement regarding use of chemi-
cal restraints.
Care plans are a key resource for sta in terms of administrating medication, and
conrming whether consent for certain medications has already been provided by
a substitute decision maker. e notion that changes to the care plan relating to the
provision of health care might not require prior informed consent raises particular
concern given many of the comments by stakeholders regarding lack of prior consent
to medication administered in long-term care settings. Many family caregivers spoke
about how challenging it was to get long-term care facility sta to nd the time to
speak with them. Similarly, a number of health care sta expressed the view that care
facility admission constituted consent to all health care treatment the health care
team felt was in the best interests of the resident, that is to say, an implicit deference
to the judgment of the care team not consistent with the law. is approach to prac-
tice is particularly problematic because the capacity standard for admission to a care
facility is generally considered higher than the standard for consent to treatment:
people living with dementia who do not have the right to make a decision regarding
admission might still have capacity to make some or all of their treatment decisions.
Given these inconsistencies in BC law, and concerns regarding practice, the RC
Regulation should be amended to provide greater clarity regarding the requirement
of informed prior consent with respect to medication included in a care plan.
e RC Regulation requires that a care facility have “written policies and procedures
for the purposes of guiding sta in all matters relating to the care and supervision of
persons in care.”
879
Given concerns regarding practice, including the fact that physi-
cians often prescribe medication over the telephone without examining the resident,
and the extensive work pressures on sta, we recommend that long-term care facilities
be required to develop policy on informed consent with a view to providing further
support to all members of the care team. is is the approach which has been taken in
Washington State. As a condition of licensing, the Department of Health regulations
require hospitals and nursing homes in Washington to adopt and implement policies
RECOMMENDATION 4
5
The Residential Care Regulation
should be amended to require
that care facilities maintain
detailed policies on sta and
health care professional obli-
gations with respect to health
care consent and substitute
decision making processes,
including the role of Public
Guardian and Trustee, which
reect the Health Care (Consent)
Care Facility (Admission) Act,
the Representation Agreement
Act, and other relevant
provincial legislation.
193
which dene patients’ rights to be involved in all aspects of their care, including the
right to refuse treatment, and to provide informed consent.
880
is innovation has
been described as playing a “policing role in the informed consent process.”
881
ere is a signicant power imbalance between physicians and their patients which
impacts on health care decision making. Older people may feel intimidated by physi-
cians. Patients may not have the power to act on their knowledge of health care rights.
Some people do not know they can make a choice inconsistent with the physician’s
recommendation; others feel signicant deference toward the physician that under-
mines their decision making autonomy.
e Residents’ Bill of Rights, which is included as a Schedule to the CCAL Act, includes
a number of rights grounded in respect for the autonomy and personal dignity of resi-
dents of care facilities.
882
e statement of rights, which applies to residents in long-
term care facilities as well as private hospitals and extended care hospitals, does not
expressly provide for the right to informed consent in health care decision making.
e Residents’ Bill of Rights includes the following rights:
1. An adult person in care has the right to a care plan developed
(a) specically for him or her, and
(b) on the basis of his or her unique abilities, physical, social and
emotional needs, and cultural and spiritual preferences.
…
2. An adult person in care has the right to the protection and promotion of his or
her health, safety and dignity, including a right to all of the following:
…
(b) to be protected from abuse and neglect;
(c) to have his or her lifestyle and choices respected and supported, and to
pursue social, cultural, religious, spiritual and other interests
…
3. An adult person in care has the right to participate in his or her own care and
to freely express his or her views, including a right to all of the following:
(a) to participate in the development and implementation of his or
her care plan.
883
RECOMMENDATION 5
Things are done to people, both in community-living older adults, and particularly for
people who are in residential care, without ever asking or considering consent or assent.
– Nurse
6
The Residents’ Bill of Rights
included in the Community
Care and Assisted Living Act
should be amended to include
clear language informing
people in reasonable detail
of their health care consent
rights, including a specic
reference to the rights to:
• Give, refuse, or
withdraw consent to
any non-emergency
medication and treatment,
where they have the
capacity to consent to
that decision;
• Receive the support of
a supportive decision
maker, if they choose
to do so; and
• Have their substitute
decision maker make a
decision if they do not
have capacity.
194
Legislation requires these rights to be displayed prominently in the care facility,
and generally be made known to residents.
884
e display of rights serves not only
to educate people about their rights, but also to contribute to creating a culture of
respect for rights.
Ontario’s Long Term Care Homes Act includes a similar list of rights; however, the list
also includes the following decision making rights:
11. Every resident has the right to,
i. participate fully in the development, implementation, review and
revision of his or her plan of care,
ii. give or refuse consent to any treatment, care or services for which his or
her consent is required by law and to be informed of the consequences of
giving or refusing consent,
iii. participate fully in making any decision concerning any aspect of
his or her care, including any decision concerning his or her admission,
discharge or transfer to or from a long-term care home or a secure
unit and to obtain an independent opinion with regard to any of
those matters…
885
Other comparable statements of patient’s rights include the right to consent to and
refuse treatment. For example, in acute care facilities in California, patients have a
right to “[p]articipate actively in decisions regarding medical care.”
886
In Washington
state, long-term care facility residents must be informed (orally and in writing) of
their right to be fully informed, and to consent or refuse treatment.
887
In BC absence in the Residents’ Bill of Rights of a reference to the right to consent to
health care is a notable gap that should be remedied.
Enhance the Duties of Guardians under the Patient’s Property Act
In Chapter 3 of the report, we compare the obligations of representatives, temporary
substitute decision makers (TSDM) under the HCCA, and personal guardians, also
known as committees of the person under the PPA. We note that, in terms of engage-
ment of an adult in substitute decision making, there are numerous inconsistencies in
the duties of substitute and supportive decision makers across these dierent statutes.
In particular:
• e representative has a duty to consult with the adult, and comply with
current wishes;
888
RECOMMENDATION 6
We end up being put in a
place of mediator, where
really our role is health care.
But we spend a lot of time
trying to sort people’s issues.
– Health authority sta
7 | Discussion and Recommendations 195
• e TSDM has a duty to consult;
889
and
• e committee has a duty to involve the adult.
890
In addition to consulting with the adult regarding current wishes about decision, a
representative must comply with previously expressed wishes made while the adult
was capable if “the adult’s current wishes cannot be determined or it is not reasonable
to comply with them”.
891
e TSDM must “comply with any instructions or wishes
the adult expressed while he or she was capable;” there is no reasonableness limita-
tion built into the duty.
892
e PPA does not contain any requirement to consider
wishes expressed while the person was capable which might restrict the exercise of a
committee’s decision making authority.
A representative and a TSDM should consider best interests only if the adult’s current
or previously expressed wishes are not known.
893
e PPA uses very dierent language
from the HCCA and the RAA, setting out limited statutory duties. A committee is
required to “exercise the committee’s powers for the benet of the patient and the
patient’s family, having regard to the nature and value of the property of the patient
and the circumstances and needs of the patient and the patient’s family.”
894
In 2014,
the PPA was amended to require that the committee “to the extent reasonable, foster
the independence of the patient and encourage the patient’s involvement in any deci-
sion making that aects the patient.”
895
e 2014 amendment was undertaken in order to help modernize guardianship legis-
lation in BC, and enhance the obligations of guardians. e AGA contains further
amendments not yet in force which would repeal the PPA, introduce the language
of “personal guardian” (as an alternative to the term “committee of the person”), and
impose obligations on personal guardians in BC similar to those found in the RAA
and the HCCA.
896
ese amendments not yet in force create a duty to comply with
previously expressed wishes, and if none are relevant to the decision at issue, the
personal guardian “must act in the adult’s best interests, taking into account the
adult’s known beliefs and values.”
897
e new duty incorporated into the PPA in 2014 may be challenging to reconcile
with a committee’s authority to act according to a judgement regarding best interests.
Further, in spite of the amendment, there remains a signicant discrepancy between
the obligations of guardians as compared with TSDMs and representatives. Greater
consistency in the statutory duties of various substitute decision makers for health
care would make it easier for everyone to better understand the law.
e PPA remains inconsistent with the CRPD. Modern best practices require moving
away from plenary substitute and best interest decision making, and recognizing of
the right of people living with disabilities to participate in decisions that impact their
lives. Both government and stakeholders identied the need to modernize guard-
ianship law in BC decades ago with the development of new legislation and the
7
Reform of guardianship law
should be explored in order
to bring greater consistency
to the statutory duties of all
substitute decision makers for
health care in British Columbia,
and greater compliance
with the general principles
contained in the United Nations
Convention on the Rights of
Persons with Disabilities.
196
signicant advocacy leading up to the design of the new legislation, which has been
partly implemented. BC guardianship law has been in legislative limbo for too long.
e government should engage in a law reform process with community consultation
to develop a new and more tailored form of adult guardianship, which could include
proclamation of Part 2, or new legislation.
7.1.2 Hospital and Care Facility Use of Restraints
Remedy Inconsistencies in the Law Regarding
Consent to Use of Restraints
All licensed long-term care facilities must comply with the RC Regulation, which
sets out rules for the use of a restraint.
898
e
RC Regulation, denes “restraint” very
broadly to mean “any chemical, electronic, mechanical, physical or other means of
controlling or restricting a person in care’s freedom of movement in a community care
facility, including accommodating the person in care in a secure unit.”
899
According to
the RC Regulation, a restraint can be used if written agreement is provided by both:
(i) the person in care, the parent or representative of the person in care
or the relative who is closest to and actively involved in the life of the
person in care, and
(ii) the medical practitioner or nurse practitioner responsible for the
health of the person in care.
900
e term representative does not mean a representative granted authority pursu-
ant to a representation agreement. RC Regulation denes a “parent or representative”
collectively as:
…a person who… in the case of an adult, has authority…under the
Health Care (Consent) and Care Facility (Admission) Act or the Patient’s
Property Act, or under an agreement under the Representation Agreement
Act to make health or personal care decisions on behalf of the adult,”
901
adding that “nothing in this regulation confers on the person any greater authority to
make health or personal care decisions than the person has under those Acts or under
an agreement under the Representation Agreement Act.”
902
Since a chemical restraint is a form of medication, the laws regarding informed
consent would also apply to the administration of medication in long-term care. Our
review of the restraint provisions of the RC Regulation identied inconsistency with
RECOMMENDATION 7
Any physician ordering any pill on somebody who doesn’t have the capacity to make a
decision—a substitute decision maker should make that decision. So, you need that under
consent. You may need it under the restraint policy too, but you need it under consent.
– Geriatric psychiatrist
7 | Discussion and Recommendations 197
HCCA and other legislation relevant to health care decision making which results in a lack of clarity
regarding who may agree to the restraint. Below are our key concerns with the provisions:
1. e discretionary language of the provision suggests the licensee may bypass the substitute
decision maker and get agreement from “the relative who is closest to and actively involved
in the life of the person in care.” e consent of the guardian, representative or TSDM is not
clearly required. Where a restraint is also a form of medication, and consent is thus required
under the HCCA, the RC Regulation is thus confusing, and may conict with the require-
ments of the HCCA.
2. ere is no requirement in the legislation to rst determine the capacity of the person in
care to make a decision about whether restraints are used, nor is there a test for capacity to
make restraint decisions embedded in the legislation. As compared with the HCCA, and
other BC statutes related to decision making, neither the RC Regulation nor the CCAL Act
contains a presumption of capacity. As such, on a strict reading the section, the licensee may
get agreement to use the restraint from a relative regardless of whether or not the resident has
capacity. In comparison, the HCCA requires the health care provider to propose treatment
and consider capacity to make the treatment decision.
3. e use of the term “representative” in the RC Regulation is confusing. e term is dened
in the regulation to mean collectively, “…a person who… in the case of an adult, has author-
ity…under the HCCA or the PPA, or under an agreement under the RAA to make health or
personal care decisions on behalf of the adult.” However, the denition also references the
RAA, according to which a representative is a person or organization empowered under an
agreement, and chosen by an adult. e HCCA denes a representative to mean “a person
authorized by a representation agreement to make or help in making decisions on behalf of
another and includes an alternate representative.”
903
To dene the concept of a representative
to include people not specically chosen by the adult is misleading given the overall frame-
work for substitute and supported decision making in BC.
4. e use of the term representative is further problematic because not all representatives
have the authority to consent to the use of a restraint. e RAA states that a representa-
tive may consent to physical restraints “if necessary to provide personal care or health care
to the adult,” only where the agreement is a non-standard agreement under section 9 of
the Act.
904
Granting authority to consent to health care for which an adult refuses would
also require a section 9 agreement. Although the RC Regulation states, as noted above, that
“nothing in this regulation confers on the person any greater authority to make health or
8
The Community Care and
Assisted Living Act (and
associated provisions of the
Residential Care Regulation)
should be amended to require
that in non-emergency situa-
tions, agreement to the use of
any form of restraint must be
obtained in the same manner
as consent to health care under
the Health Care (Consent) and
Care Facility (Admissions) Act.
The provisions should include:
• A presumption of capacity;
• A requirement that the
consent be informed;
• A hierarchy of substitute
decision makers; and
• An independent decision
maker as a last resort, such
as the Public Guardian
and Trustee.
The use of the term “repre-
sentative” should be avoided
unless used to reference
a representative under a
representation agreement.
198
personal care decisions than the person has under those Acts or under
an agreement under the Representation Agreement Act,” the provision
remains misleading.
5. Section 74 introduces a new kind of substitute decision maker who
may agree to the use of restraints, namely, “the relative who is closest
to and actively involved in the life of the person in care”. is language
diverges signicantly from the hierarchical list of health care decision
makers included in the HCCA, and creates a scenario where a person
living with dementia could have a dierent substitute decision maker for
chemical restraints (being a form of medication and therefore subject to
the HCCA), and physical restraints, which would be governed exclusively
by the restraint provisions.
6. e provisions do not identify a role for the Public Guardian and
Trustee (PGT) as either decision maker of last resort for restraints, or to
resolve disputes over who is entitled to agree to the use of the restraint,
which are common. As a result, while the PGT may make decisions
regarding chemical restraints if appointed by a court as personal guard-
ian, or as health care decision maker of last resort where the restraint use
relates to the provision of health care, the oce does not otherwise have
authority to consent restraint use.
7. e RC Regulation does not place any obligation on health care
providers or facility sta to support informed decision making regarding
restraints. As discussed below, they are required to provide some infor-
mation after the fact.
8. Finally, it is problematic for the denition of “parent or representa-
tive” to refer to person having authority to make health care or personal
care decisions under the HCCA, PPA, or RAA. Such a reference makes
sense only where the person is globally incapacitated. Under the HCCA,
whether a person has authority to make a health care decision always
depends on the specic decision being made, and the timing of the
decision. e RC Regulation suggests that the authority of a TSDM
continues beyond a specic health care decision, which is not an accurate
reection of health care law in BC.
e provisions of the RC Regulation regarding restraint appear to be strikingly at
odds with the principles of autonomy, self-determination, and dignity underlying
BC’s health care consent and guardianship laws, and the common law principles
that informed the development of health care law in BC and Canada. As currently
worded, the provisions creates confusion for health care professionals who are
aware of the provision. However, as discussed further below, our consultation
ndings suggest that many health care professionals consider any medication,
9
Section 75(3) of the
Residential Care Regulation
should be amended to:
• Require consent of
either the adult, or their
substitute decision maker,
when emergency use of
a restraint continues for
more than 24 hours; and
• Recognize the right of the
adult, or the substitute
decision maker, to revoke
their consent to the use of
the restraint.
199
including drugs used as a form of restraint, to be health care treatment, and so subject
to the HCCA.
BC’s approach to restraint in long-term care described above is fairly unique. With
some notable exceptions, generally the regulation of long-term care in Canada is silent
regarding consent (or agreement) to the use of a restraint. e Ontario Long-Term
Care Homes Act has introduced regulatory provisions regarding restraint. ese provi-
sions require the consent of the resident, or where incapable, the resident’s substitute
decision maker with authority to consent, before a physical restraint can be used.
905
We recommend the inconsistencies between the HCCA and the RC Regulation
regarding agreement to use of a restraint be eliminated. is reform may have impli-
cations for the work of various agencies.
ere also appear to be signicant internal inconsistencies within the RC Regulation
with respect to the requirements for reassessment of the need for ongoing use of
a restraint. e RC Regulation requires reassessment of “the need for the restraint
at least once within 24 hours after the rst use of the restraint.”
906
With respect
to subsequent uses, the reassessment requirements are less strict. Once the initially
agreed-to period is over, the RC Regulation requires that the licensee “consult, to the
extent reasonably practical, with the persons who [initially] agreed to the use of the
restraint”.
907
We do not see any foundation for this dierence in process.
Clarify the Obligation to Inform Substitute Decision Makers
Following the use of restraints in an emergency, the licensee, or a person authorized
by the licensee must:
73(3)(a)provide, in a manner appropriate to the person’s skills and abilities,
information and advice in respect of the use of the restraint to
(i) the person in care who was restrained,
RECOMMENDATION 9
RECOMMENDATION 8 PAGE 198 SIDEBAR
What we found is that, when a person was in that setting [long-term care],
then there was this implicit agreement to whatever was to be done to them
was just going to be done because they had signed those papers.
– Non-prot agency
10
Section 73(3) of the Residential
Care Regulation should be
amended to require that the
resident’s substitute decision
maker, if any, be informed
of any emergency use of a
restraint as soon as possible
after its use, including:
• The reasons for its use; and
• The duration of its use.
200
(ii) each person who witnessed the use of the restraint, and
(iii) each employee involved in the use of the restraint, and
(b) document in the care plan of the person in care the information and
advice given.
908
ere is no requirement in this subsection that the licensee inform the resident’s
substitute decision maker or family members about the emergency use of a restraint.
However, an emergency use of restraint is a reportable incident under the RC
Regulation,
909
and licensees must notify “the parent or representative, or contact
person, of the person in care”
910
of any reportable incident.
Consultation with family members of people living with dementia conrms that
family members are often not notied promptly, if at all, regarding the use of an
anti-psychotic to address behaviour sta nd challenging to manage. A number of
people commented that communication with long-term care facility sta was di-
cult. One family caregiver who was substitute decision maker for health care said she
only found out about medication changes because she was the attorney under a power
of attorney, and so received medication bills. Caregivers spoke of asking for medica-
tion information, and being directed to le a Freedom of Information and Protection
of Privacy Act request because the resident’s chart was condential. Many families
struggle to get timely information on medication changes.
ere was general consensus among key informants that it is good practice to keep
families informed of changes in medication, particularly where the resident has
dementia, and family are involved in decision making. Although some physicians
leave it up to families to reach out for updates regarding medication changes, every
stakeholder with whom we spoke was of the view that substitute decision makers
should be notied at some point in the near future regarding emergency changes.
Indeed, there does not seem to be any logical reason not to notify substitute decision
makers regarding an emergency use of restraint. As such, greater clarity under the RC
Regulation is warranted to conrm that substitute decision makers for health care are
entitled to notication following emergency use of a restraint.
Dene Chemical Restraint
e RC Regulation denes restraint broadly as “any chemical, electronic, mechanical,
physical or other means of controlling or restricting a person in care’s freedom of
movement in a community care facility, including accommodating the person in care
in a secure unit”.
911
Chemical restraint is not dened in either the CCAL Act or the
RC Regulation.
Consultation ndings suggest that health care professionals prescribing anti-psy-
chotic medications rarely consider whether the medication is being used as a chemical
RECOMMENDATION 10
7 | Discussion and Recommendations 201
restraint pursuant to the restraint provisions of the RC Regulation. Some of the health
care professionals and sta we consulted who work in long-term care were not even
aware of the provisions of the RC Regulation regarding restraints. Most informants who
were aware of the RC Regulation thought it applied only to physical restraints, and had
not considered the rules might apply to anti-psychotics.
Medication that can be restraining is generally prescribed and administered according
to the same processes as other medication identied to meet residents’ health care needs.
In each instance the physician should consider whether the medication is the appro-
priate treatment for the resident given all the circumstances. While, as discussed below,
it appears that in some instances health care providers are not getting consent when
they should, whether or not they are obtaining prior informed consent for non-emer-
gency use of an anti-psychotic seems unrelated to whether the drug is characterized as a
restraint. Even the two physicians who expressed an opinion that anti-psychotics were
often being used as a restraint did not make any distinction in the consent processes
used for their prescription. When made aware of the RC Regulation provisions regarding
restraints, physicians questioned how the rules impacted practice in terms of the use of
anti-psychotics, as all medication is generally viewed as minor health care. At the same
time, most key informants were aware of their facility’s least restraint policy, and of the
importance of reducing anti-psychotic use in long-term care.
Based on both research and consultation, the line between when an anti-psychotic is
a medication versus a restraint is not distinct, and the views and practices of health
care professionals vary. Only one physician with whom we consulted was condent in
delineating when the use of an anti-psychotic was health care versus a restraint. When
pressed, physicians and geriatric psychiatrists said that the use of anti-psychotics can
be framed as health care treatment if the medication is alleviating suering in any way;
however, many key informants felt the distinction was a ne line because the impact of
medication can be restraining even when the intention is therapeutic.
Based on our research, it can be challenging to determine whether and in what circum-
stances the administration of anti-psychotic drugs to treat dementia-related behaviours
is a form of restraint, and there is limited regulation in this area in Canada. e expe-
rience in BC raises the question of whether it would be worthwhile to develop a legal
denition to support health care professionals and care facilities to properly apply the
restraint provisions to their practice. Some elements of the restraint provisions, such as
requirements for timely review of use of the restraint, and documentation of agreement
to use, as well as restrictions on use, are positive additions to the regulation of the use of
restraints in BC. e value of these provisions is lost if people working in long-term care
do not appreciate when they should be applied to medication.
A number of key informants expressed the view that anti-psychotic drugs and other
psychotropics may form part of an appropriate treatment plan for mental health issues
like psychosis, and would not constitute restraint if prescribed for the therapeutic bene-
t of the person living with dementia, for example, if intended to ease suering. Based
Let’s look at a case that
is a patient making a lot
of noise, and interfering
with other people, and is
going up and knocking
on the nurse’s station
repetitively. And saying
“help me, help me, help
me, help me! Imagine
that. But that, you know,
would be an abnormal or
an inappropriate use of
an anti-psychotic. Unless
it was so bad that other
residents were hitting
him. You know, like, it
caused aggression. Noise
in itself, and pacing in
itself, wandering in itself,
those kinds of things,
anti-psychotics would
be totally inappropriate.
That would be a restraint.
– Geriatric psychiatrist
11
The restraint provisions
of theResidential Care
Regulationshould be amended
to dene chemical restraint as
the administration of psycho-
tropic medication to prevent
harm to a resident or others
in situations where a resident
has lost behavioural control, or
where there is imminent risk of
loss of control in behaviour.
202
on both consultation and research, anti-psychotics can be appropriate for treating
dementia-related behaviours in limited circumstances. It appears that the concept
of chemical restraint is useful in helping to distinguish inappropriate use of an
anti-psychotic.
We were not able to identify a Canadian statutory denition of chemical restraint.
However, located denitions of chemical restraint in other sources. e College of
Nurses of Ontario denes a chemical restraint as “any form of psychoactive medi-
cation used not to treat illness, but to intentionally inhibit a particular behaviour or
movement.”
912
e College and Association of Registered Nurses of Alberta denes
chemical restraint very similarly as “[a]ny psychotropic drug not required for treat-
ment, but whose use is intended to inhibit a particular behavior or movement”.
913
Both denitions focus on inhibiting particular behaviour. Vancouver Island Health
Authority’s (now Island Health) Community Care Facilities Licensing Program
speaks to “controlling” rather than “limiting” behaviour, dening chemical restraint as
“any medication used to control behaviour beyond the point of therapeutic benet.”
914
e Patient Safety Institute of Canada (the Institute) has developed a more lengthy
denition which identies preventing harm, rather than controlling the person, as the
reason for using the medication. Control is referenced only in terms of identifying a
patient’s loss of behavioural self-control as the reason that harm may otherwise occur.
e Institute characterize a chemical restraint as “the administration of psychotropic
medication in situations where a person may have already lost behavioural control or
where there is imminent risk of loss of control in behaviour that will lead to harm to
self or others.”
915
Although the four denitions vary, the focus of each is the intention
of the health care professional prescribing the medication rather than the impact of
the medication, which is line with above-noted concerns that the impact of medica-
tion can be restraining even when the intention is therapeutic.
Restraint provisions provide important safeguards which apply to all restraints,
whether chemical, mechanical, or physical. To bring the use of anti-psychotics and
other medications as a form of restraint clearly within the ambit of the RC Regulation,
and to provide for greater supervision and assessment of the use of such medication,
we recommend the RC Regulation be amended to clarify when medication is being
used as a restraint.
RECOMMENDATION 11
12
Section 85 of the Residential
Care Regulation should
be amended to include
a requirement that long-
term care facilities have a
detailed policy on the use
of restraints, in both emer-
gency and non-emergency
situations, which outlines:
• The consent process; and
• Requirements for
advising substitute
decision makers.
203
Require Policy Regarding Non-Emergency Use
of Restraints in Long Term Care
Under the RC Regulation a licensee must have written policies and procedures regard-
ing the use of restraints in an emergency; however, there is no such specic require-
ment regarding the non-emergency use of a restraint.
916
As the use of restraint is an
extreme measure that limits liberty and creates additional risk for the resident regard-
less of whether or not the use is an emergency response, it is not clear why policy is
required in one instance, and not the other. Further, Project Advisory Committee
members felt that policy guidance regarding non-emergency use of a restraint would
be very helpful to sta. We recommend policy be required in the RC Regulation.
I said, “Risperidone, no!” Not the doses like this, small doses twice a day, something
else, very small, because you know what? They are sleeping there all the time! All
these people are sleeping there. And they want them to sleep. Because, they are
peaceful…[But] my husband also needs to walk, because when he has Parkinson’s,
he has sti muscles, and if he doesn’t walk, he will be not able to walk.
– Family Caregiver
RECOMMENDATION 12
204 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
7.2 SUPPORTING BEST PRACTICE IN HEALTH CARE CONSENT
Research and consultation indicate a need for enhanced understanding of the Health Care (Consent)
and Care Facility (Admission) Act (HCCA) and the Mental Health Act (MHA) among health care
professionals and long-term care facility sta, such as health care assistants (HCAs). In this Section
7.2 we identify recommendations aimed at addressing the education and professional development
needs of health care sta regarding informed consent obligations, as well as policy or practice guide-
lines to support best practice.
Almost every key informant expressed the view that further education on health care consent law
would be helpful for their profession, or at their workplace. Based on discussion with stakeholders
and Project Advisory Committee members, the ideal model of education delivery includes a mix of:
• Early career university or college training;
• On site professional development and training on the topic; and
• Ongoing practice support.
We address education and learning at each of these three points in professional development in this
part of Chapter 7.
All key informants working in health care recognize that consent is required for certain types of
treatment, for example, for surgery and dialysis. Written consent is usually obtained in these instances.
Otherwise, health care professional practice and knowledge of the law with respect to obtaining
informed consent varies considerably, particularly among people working in long-term care. e
following gaps in knowledge of the law are of particular concern:
1. A number of key informants, including physicians and long-term care sta, did not seem to appre-
ciate that prior informed consent is required by law for non-emergency care, even if the care would
t the HCCA denition of minor (rather than major) health care. A number of physicians and other
health care sta consider it appropriate practice to inform the family member acting as substitute
decision maker after the resident’s medication had been changed—sometimes not until an annual
care conference occurs.
2. Long-term care sta are not always administering medication and treatment in a manner that
respects the rights of people living with dementia and their substitute or supportive decision makers
to participate in health care decision making. Some family caregivers expressed concern that HCAs
What happens is that there’s a belief that the consent happens when you cross that threshold
into care…Without realizing that, every step in that care, everything you do that’sdierent,
needs a consent.
– Health authority sta
7 | Discussion and Recommendations 205
were reluctant to share information regarding the resident’s care, let alone contact the family member
holding a representation agreement in advance of medication changes. It is evident that some family
caregivers who are substitute or supportive decision makers experience great diculty in gaining any
information or engagement from health care professionals and sta. Some sta mistakenly believe
that when people sign admission papers they are agreeing to all care deemed appropriate by the care
team. Further, some comments by physicians betrayed paternalism, and lack of respect for the role of
substitute decision makers.
3. ere is confusion about the mandate of the Public Guardian and Trustee (PGT), and its role as
a health care decision maker, resulting in inconsistent practice in terms of when health care profes-
sionals, sta, or operators contact the PGT for assistance. It seems that the PGT is not always being
engaged as decision maker of last resort for people who do not have either capacity or family and
friends available and suitable to take on that role. Some people living with dementia in long-term
care have no health care decision maker, resulting in circumstances where physicians and health care
teams are making day-to-day health care decisions on behalf of these people in circumstances where
the PGT ought to be engaged.
4. e MHA is sometimes being used to involuntarily commit an older person living with dementia
without proper consideration of whether the adult meets the criteria under the law, resulting in exclu-
sion of people living with dementia, family members, and substitute and supportive decision makers
from health care decision making related to psychiatric treatment. Interviews with some physicians
and geriatric psychiatrists indicate lack of understanding of the law. Consultation suggests involuntary
committal is being pursued when voluntary treatment might have been possible.
is Section 7.2 contains recommendations which address the knowledge and education of health
care professionals and sta in relation to the following topics:
1. Health care consent law;
2. Incapability assessment;
3. Documentation of informed consent;
4. Dementia and capacity support; and
5. e role of the Mental Health Act in treating people living with dementia
We also discuss practice support for sta.
13
The College of Physicians and
Surgeons of British Columbia
should disseminate to all
members materials aimed
at supporting physicians to
understand their obligations
with respect to health care
consent and substitute decision
making processes, including
the role of Public Guardian
and Trustee, which reect the
Health Care (Consent) Care
Facility (Admission) Act, the
Representation Agreement
Act, and other relevant
provincial legislation.
206
7.2.1 Professional Development and Education regarding Health
Care Consent Law
Physicians
Physicians are key to supporting best practice in health care. ey are generally
the prescribers of medication, and they hold much authority within health care
environments.
e College of Physicians and Surgeons of BC (the College) produces a number of
resources to support best practice, including both practice standards and legislative
guidelines. Standards play a key role in both practice support and oversight by the
College, which looks particularly to standards of practice, rather than legislation, in
adjudicating complaints. e College has not developed a standard on health care
consent, although it has published a two-page legislative guideline on the consent for
care of minors.
917
Of the other four provinces with consent statutes, Ontario and the
Yukon’s physician regulatory bodies have developed detailed policies or standards on
consent to health care.
918
Quebec’s Physician Code of Ethics sets out some broad key
principles only.
919
Rather than developing its own practice standard on consent, the College of
Physicians and Surgeons of BC has adopted the Canadian Medical Association
(CMA) Code of Ethics, which contains a section on “Communication, Decision
Making and Consent”. e Code includes principles regarding informed consent,
and respect for the decision making autonomy of a “competent patient.” Being a
national resource, the Code is silent regarding substitute making and the role of
Public Guardian and Trustees. e Code states:
When the intentions of an incompetent patient are unknown and when
no formal mechanism for making treatment decisions is in place, render
such treatment as you believe to be in accordance with the patient’s
values or, if these are unknown, the patient’s best interests.
920
is statement of physician responsibilities may be comprehensive for jurisdictions
governed exclusively by the common law doctrine of informed consent; however, the
principle omits important aspects of the health care consent regime developed for BC.
e principle is misleading in that it implies that physicians may make health care
decisions for adults who do not have mental capacity, so long as their decisions are
grounded in respect for known wishes and best interests. Based on our consultation
When I do talk about consent, and the obligation piece around risks
and benets, they say, ‘my doctor has never done that.’
– Social worker
14
The BC Ministry of Health’s
Health Care Providers’ Guide
to Consent to Health Care
should be amended in
the following manner:
• Include discussion of
the importance of using
professional interpreters,
and awareness of hearing
and speech issues, in
determining capacity, and
providing information
about treatment;
• Add information on
supported decision
making by way of a
representation agreement;
• Clarify that consent to
non-psychiatric treatment
is still required under the
Health Care (Consent) and
Care Facility (Admission)
Act where a patient is
involuntarily committed
under the Mental
Health Act; and
• Provide expanded
information on the role of
the Public Guardian and
Trustee with respect to
health care consent.
207
ndings discussed above, physicians require more detailed and BC-specic guidance
in order to better understand their legal obligations regarding health care consent.
e Project Advisory Committee discussed whether a practice standard should be
developed to support physician understanding of the law of consent, and in partic-
ular, whether the College should develop a provincial standard, or the CMA should
develop a national standard. On the one hand, some members of the committee felt
the national body was the place physicians were most likely to look for guidance, for
example, as noted above, some provincial colleges have adopted the national Code
of Ethics; on the other hand, there are some nuances of consent law that are unique
to BC, such as the titles and responsibilities of representatives as supportive and
substitute decision makers, and the role of the PGT as health care decision maker of
last resort. Another advantage of the national route is the potential to enhance prac-
tice across the country. Committee members noted that the process of developing a
guideline could take some time, and may not be the fastest way to improve physician
knowledge of the law.
As recently as December 2017, the College developed an Accreditation Standard for
Patient Care on Consent applicable to non-hospital medical and surgical facilities
which discusses legal and ethical obligations with respect to consent.
921
e document
identies some key legal principles and links to a number of resources to support prac-
tice, including the College of Registered Nurses of BC standard on consent (now the
BC College of Nursing Professionals), a Guide to consent published by the Canadian
Medical Protective Association (CMPA),
922
and a guide to consent to health care
developed by the Ministry of Health in 2011. e CMPA guide, like the Code of
Ethics, does not reect important nuances of the law in BC; however, the Ministry
Health Guide to Consent to Health Care is an excellent resource that follows the
HCCA closely, and includes both consent ow charts and scenarios involving older
patients. e College of Speech and Hearing Health Professionals adopted this Guide
as a clinical practice guideline in 2018, and published both a standard of practice
923
and
clinical practice guideline on consent
924
after conducting a survey of member practice
which identied a need for further education on this topic.
With the above discussion in mind, we recommend that the College of Physicians
and Surgeons of BC make use of existing practice resources that reect BC law in
order to enhance members’ knowledge of health care consent law; however, we also
identify below a number of areas where the Ministry of Health Guide could be
improved by addressing some topics currently inadequately covered by the Guide.
RECOMMENDATION 14
RECOMMENDATION 13 PAGE 206 SIDEBAR
15
The General Practices Services
Committee Divisions of Family
Practice and the UBC Faculty
of Medicine Divisions of
Geriatric Medicine and Geriatric
Psychiatry should undertake
educational work aimed at
supporting physicians to better
understand their obligations
with respect to health care
consent and substitute decision
making processes, including
the role of Public Guardian
and Trustee, which reects
the Health Care (Consent) Care
Facility (Admission) Act, the
Representation Agreement
Act, and other relevant
provincial legislation.
208
e Project Advisory Committee and other key informants identied the Divisions
of Family Practice as a key body working collaboratively within specic communi-
ties to enhance local physician care. e Divisions are an initiative of the General
Practices Services Committee (GPSC), developed in 2002 as a partnership between
the Doctors of BC and the Government of BC. Over the years, the GPSC has
focused on a number of areas of practice, including its Residential Care Initiative,
which funds community-specic initiatives to improve the care older people receive
in long-term care.
925
Activities of the Residential Care Initiative have focused on:
• Increasing the number of physicians providing care to seniors living in
long-term care;
• Reducing emergency hospital transfer rates;
• Reducing anti-psychotic use and over-medication;
• Reducing physician response time through after-hours care
programs; and
• Increasing proactive physician visits with residents.
926
Both key informants and Project Advisory Committee members felt that the
Divisions of Family Practice could be a powerful partner in enhancing physi-
cian education and practice regarding health care consent. e Project Advisory
Committee also identied the UBC Faculty of Medicine Divisions of Geriatric
Medicine and Geriatric Psychiatry as a key educator of specialists.
Nursing Professionals
Practice standards on consent applicable to licensed practical nurses and registered
nurses are produced by the BC College of Nursing Professionals (the Nursing
College) to support their members.
927
Like physicians, most nursing professionals
have signicant exibility in choice of professional development activities. e excep-
tion is licensed practical nurses, who must take a Jurisprudence Exam every three
years, which covers consent law.
928
Based on key informant interviews, nurses appear to vary in terms of knowledge of
health care consent law. Generally it seems that recent graduates may have studied
health care consent law as a mandatory aspect of university and college curriculum;
You have a nurse who is caring 50 or 25 residents, and she has the timeline, and
she has all these medications. She doesn’t have time to go back and forth, right?
So it’s much easier to crush it up in the jam, or hide it in the sandwich.
– Nurse
RECOMMENDATION 15
16
The BC College of Nursing
Professionals should publish,
and widely disseminate to all
registrants, material on a nurse’s
informed consent obligations,
with a particular focus on the
licensed practical nurse and
registered nurse’s role with
respect to consent to health
care treatment prescribed by
physicians in long-term care.
209
however, more senior nursing professionals, who form the majority, would not have
benetted from this newer addition to the curriculum. Further, many nursing profes-
sionals may have been trained in other jurisdictions, where the law is dierent from
BC. ese nurses will be certied to practice in BC with limited exposure to BC
health care consent legislation.
Health Care Assistants
Although it is regulated health care professionals who have the duty to obtain
consent, in the long-term care context it is often HCAs who have the most contact
with a resident throughout the day, providing care under the supervision of RNs
and LPNs. RNs may delegate certain tasks to HCAs, including the administration
of medication. Such delegation raises issues of accountability regarding informed
consent, and speaks to a need for all care facility sta to have a consistent understand-
ing of health care rights and responsibilities.
HCAs receive their training in colleges throughout BC. e curriculum is the respon-
sibility of two government ministries: the Ministry of Health sets and reviews HCA
competencies on a regular basis;
929
the Ministry of Advanced Education develops and
periodically reviews the curriculum based on this core competency prole. Revisions
to the curriculum appear to have been last carried out in 2015 with the help of a
Steering Committee made up of representatives from various stakeholder groups.
930
In addition to the curriculum, a supplement is developed and produced to “support
the delivery and assessment of required learning outcomes.”
931
e Alzheimer Society
of B.C. was also recently involved in developing aspects of this supplement.
e BC Care Aide and Community Health Worker Registry (the Registry) also plays
a role in supporting the practice of HCAs. Although registration is generally volun-
tary, HCAs who work in publicly funded care facilities must be registered. Health
care workers in home and community care whose employers receive public fund-
ing also must register. For internationally-trained nurses, the Nursing Community
Assessment Service undertakes a competency-based assessment, upon referral by
the Registry. Based on their assessment report the Registry determines whether the
applicant must undertake any transition education before being registered to be eligi-
ble to work in BC.
932
e Registry also has a mandate to support professional devel-
opment of HCAs,
933
which it meets by providing access to online learning modules
on various topics via its website.
Based on our review, it is not clear that the HCA curriculum includes any instruc-
tion on health care consent and substitute decision making processes, and, in partic-
ular, the HCA’s role in the process. e Registry also does not appear to provide
RECOMMENDATION 16
17
The British Columbia Ministry of
Health and the Ministry of Advanced
Education, Skills and Training should
review and amend the Health Care
Assistant Core Competency Prole
(March 2014) and the Health Care
Assistant Provincial Curriculum
(2015) to ensure that health care
assistants receive training on health
care consent and substitute decision
making, including clarication of
the role of health care assistants in
facilitating the consent process as a
member of an inter-disciplinary team.
18
Working with relevant partners, the
Care Aide and Community Health
Worker Registry should develop an
educational module for health care
assistants on health care consent and
substitute decision making processes,
including the role of Public Guardian
and Trustee, which reects the Health
Care (Consent) Care Facility (Admission)
Act, the Representation Agreement
Act, and other relevant provincial
legislation. The Registry should make
this course easily accessible to its
registrants, promote it widely, and
consider methods of incentivizing
registrants to undertake the course.
210
information on professional development addressing health care consent and
substitute decision making.
7.2.2 Assessing Incapability to Consent to Health Care
All adults are presumed to be capable of consenting to their own health care
“until the contrary is demonstrated.”
934
Where capacity is at issue, the HCCA
describes what factors should be considered in determining whether a person
is incapable of making a health care treatment decision. e health care
provider’s decision must be based on whether or not the person demonstrates
understanding of:
(a) the information given to them by the health care provider regarding
the nature of the treatment, its risks, benets and alternatives; and
(b) that the information applies to the situation of the adult for whom
the health care is proposed.
935
It is very important to autonomy rights that people not be denied the right
to make their own health care decisions unless an incapability assessment has
occurred. Based on our consultation, there are a number of problems with
practice in this area. Advocates and lawyers raised concerns that assessments
are not always being conducted when they should be, and that a lack of capac-
ity is presumed either based on a diagnosis of dementia, or the statement from
a family member that the person is incapable of consenting to health care. One
lawyer indicated that they had twice seen physicians sign adavits expressing
the opinion that a person was incapable based on the person’s refusal to partic-
ipate in the incapability assessment. Without a proper incapability assessment,
health care professionals and sta do not develop a proper baseline knowledge
of the person living with dementia, and of what kind of support they require
to participate in decision making.
All health care professionals must have an adequate understanding of capac-
ity in order to recognize signs of incapability; however, not every health care
professional will be called upon to conduct an incapability assessment. A
number of key informants from the health care sector conrmed that they had
not received training in how to conduct an incapability assessment. is lack
of education was conrmed by a number of members of the Project Advisory
Committee, who were generally of the view that training was not read-
ily available. is dynamic undermines practice, fails to protect legal rights,
and creates stress for sta who are often already overwhelmed. One health
RECOMMENDATION 17
RECOMMENDATION 18
19
The BC Health Regulators should
work with the appropriate regulatory
colleges, the British Columbia Ministry
of Health, and key organizations such as
Doctors of BC, to develop educational
modules on incapability assessment
with respect to health care decision
making and care facility admission.
Content should provide guidance on:
• How to engage the person
being assessed in the
assessment process?
• What is the appropriate
involvement of supportive family
and friends in the assessment
process, and what emphasis should
be placed on their views when they
dier from the perception of the
person living with dementia?
• What is the appropriate
involvement of dierent health
care professionals and various
members of the care team in the
assessment process?
• How to appropriately
document ndings?
• What is the impact of hearing,
speech and language issues on
incapability assessment?
• How can variables such as
medication and time of day be
reected in the process so as to
support the person living with
dementia to present with as much
capacity as is possible for them?
• What avenues are available to a
person who wishes to challenge a
nding that the person is incapable
of making a health care treatment
or care facility admission decision?
211
care professional said sta wind up in uncomfortable situations where family
want to make the decision because they say the person living with dementia is
incapable, but the worker does not have the skills to make the determination
required under the HCCA.
Of all health care professionals, primary health care physicians may have the
most long term knowledge of the person living with dementia; however, they
don’t generally have specialized training in incapability assessment. A number
of resources have been developed to support physician understanding of
capacity and incapability assessment. However, most assessment and screening
tools are geared toward assessing incapability for nancial decision making,
936
and no standardized tools exists which align perfectly with legislative capacity
standards for health care decision making in BC.
937
e PGT has developed
a set of Practice Guidelines for Incapability Assessments under Part 3 of the
Adult Guardianship Act in collaboration with an inter-disciplinary advisory
committee,
938
which does not cover how to assess capacity to consent to health
care treatment.
Ultimately, a clinical interview oers the best approach to assessment;
939
however, “no clear best practices on how to do this interview” exist,
940
and
achieving consistency in practice points to a need for training.
941
According
to Dr. Deborah O’Connor, the MacArthur Competence Assessment Tool for
Treatment “is emerging as the ‘gold standard’ for assessing capacity to consent
to medical treatment;”
942
however, the tool has some limitations. Research
indicates that it can result in a greater likelihood of a nding of incapability
for a decision as compared with a clinical interview,
943
and “[u]se of the tool
requires substantial training.”
944
In 2010 Dr. Martha Donnelly worked with an interdisciplinary committee
to develop two incapability assessment modules through the University of
BC Department of Family Practice. e curriculum formed part of a series
of modules entitled “Care for Elders”. e modules, which again focused on
capacity for nancial and personal decisions, rather than health care or care
facility admission decisions, included pre-reading followed by a group learning
activity which involved working through practical scenarios with the support
of an expert facilitator. Completion of the modules was incentivized through
assignment of accreditation value by the College of Physicians and Surgeons,
and funding to develop the modules and pay for the facilitators was provided
by the Ministry of Health.
However, it is not clear that physicians should be the professionals who
conduct incapability assessments, particularly in view of pressures on their
time. Other health care professionals, such as occupational therapists, nurses,
psychologists, and social workers might be appropriate.
RECOMMENDATION 19
212 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
7.2.3 Documenting Informed Consent to Treatment
Although the HCCA requires a health care provider to consider whether a person has capacity to
consent to health care, and to obtain their informed consent, either directly or through a substitute
decision maker in cases of incapability, there is no explicit requirement in the legislation to document
that this process has occurred.
945
Also, licensees of long-term care facilities in BC do not have legal
obligations with respect to the consent process.
946
In the 2012 Best of Care Report, the Ombudsperson recommended that the Ministry of Health remedy
this gap to ensure that the consent rights of people in care are respected. ey pointed out that:
Without any clear documentation requirements, it is dicult to ensure that informed
consent has been obtained and veried before medication is administered to people in care.
In order to protect the rights of people in care, the ministry should establish binding legal
requirements to document consent.”
947
e Ombudsperson’s recommendations in this regard place obligations with respect to documentation
of consent on both the health care providers and licensees (operators):
948
R139: e Ministry of Health take the necessary steps to amend the Health Care (Consent) and Care
Facility (Admission) Act so that health care providers administering medication in residential care are
legally required to document:
• that they have considered whether a person in care is capable of providing informed consent
• who provided informed consent
• when informed consent was provided
• how informed consent was provided
• the duration of the consent
R140: e Ministry of Health take the necessary steps to establish legal requirements for
operators to:
• ensure that facility sta verify from the documentation that informed consent has been
obtained and is still valid before administering medication
• require facility sta to document their verication of consent prior to
administering medication
7 | Discussion and Recommendations 213
In making these recommendations, the Ombudsperson noted the existence of limited professional
regulation regarding documentation of informed consent in BC.
949
Based on our more recent review of
professional guidelines and standards, the Nursing College has produced a comprehensive and legally
accurate Practice Standard on “Consent”, which requires nurses to document the consent process;
however, no equivalent standard applies to physicians.
950
Although the Nursing College produces a
standard on consent to health care, the standard does not discuss documentation of consent.
951
Registered nurses are required to verify that consent has been given when participating in the delivery
of treatment by other health professionals. In the absence of a corresponding obligation on physicians
and other health professionals to document the consent process, it is dicult for registered nurses to
comply with this standard to verify.
952
At this time Ontario’s Long-Term Care Homes Regulation is the only Canadian law which places an
obligation with respect to the consent process on licensees of a care home.
953
We also reviewed legis-
lation in a number of US jurisdictions. In Washington and California facility sta and operators have
some obligations with respect to the consent process. In California, facility sta must verify that the
patient’s health record contains documentation that the patient has given informed consent to the
treatment, prior to administering a psychotherapeutic drug (or physical restraint or other device).
954
In
Washington, nursing homes must ensure the informed consent process is followed.
955
As a condition of
participation in Medicare and Medicaid programs,US hospitals must ensure written documentation
of consent is included in patients’ medical records.
956
In discussing potential recommendations regarding physician responsibilities with respect to docu-
menting consent, the Project Advisory Committee expressed concern that the recommendation
should not be too onerous, considering that health care professionals and care facility sta are already
required to complete a signicant number of forms.
Both key informants and Project Advisory Committee members suggested building prompts regard-
ing consent into existing forms used by physicians and sta to order medication and ll orders. We
discussed whether health care professionals and sta should be required, or prompted, to document
consent in the Medication Administration Record (MAR), or the Medical Order for Scope of
Treatment (MOST) as a means of more specic action in the spirit the Ombudsperson’s recommen-
dations discussed above. Both forms are part of long-term care patient les. e committee was not
condent that the MAR was the right location for documenting consent, given that medication is
often ordered by a physician who is not onsite, and the MAR is completed by facility sta. Moreover,
Health care consent for people who are not currently felt to be able to make decisions for
themselves, in a residential care environment, is poorly managed.
– Physician
214 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
the committee was of the view that a recommendation regarding mandatory amendments to the
MAR would require an amendment to the CCAL Act or the RC Regulation.
e MOST is a medical order of a physician which communicates to other health care profession-
als and sta the patient’s wishes and goals for care in order to help avoid unnecessary or unwanted
interventions.
957
e form is generally completed at the time of admission after discussion with the
patient, the health care team, and the person’s substitute or supportive decision makers. e MOST
form contains a section to identify advance care planning documentation, such as advance directives
or representation agreements. ere is no requirement for the form to be signed by the patient or their
representative. e form is not a type of advance directive or otherwise a legal document, in contrast to
the Ministry of Health’s “No Cardiopulmonary Resuscitation – Medical Order” form, which allows
for a signature from the patient or their substitute decision maker, or a valid advance directive, which
is subject to strict execution requirements.
958
Although, the MOST seems to play a key role in practice in most long-term care facilities in terms of
documenting wishes regarding care, there is some confusion among both the public and health care
sta regarding the purpose and authority of a MOST. A number of Project Advisory Committee
members noted that people sometimes think that by participating in completion of the MOST form
they are legally appointing a substitute or engaging in legal advance planning. We understand from
discussions with the BC Ministry of Health and the Seniors Advocate that a province-wide project to
review the MOST form, and to standardize practice with respect to the use of the form across health
authorities, is underway.
959
Based on this information, we are not including any recommendations
regarding the MOST in this report. However, we note that if the MOST becomes a site for docu-
menting consent, health care sta and physicians should be required to take great care in explaining
the purpose of the MOST, and distinguishing it from an advance directive, or a substitute decision
maker appointment process.
Currently the College of Physicians and Surgeons’ bylaws set out detailed requirements for physi-
cian record-keeping and documentation. ey include a requirement to keep a clear record for each
patient including “the specics of any treatment, recommendation, medication and follow-up plan”,
but excluding any requirement to document the consent process.
960
With respect to the content of a
patient’s medical records, the bylaws require the following:
3-5 (1) A registrant must…
(b) keep a clinical record on each patient containing
(i) the patient’s name, gender, personal health number, date of birth, address and
dates of attendance,
(ii) sucient information to clearly explain why the patient came to see the
registrant and what the registrant learned from both the medical history and the
physical examination,
(iii) a clear record of what investigations the registrant ordered,
(iv) a clear record of either the provisional diagnosis or diagnosis made, and
(v) a clear record of the specics of any treatment, recommendation, medication and
follow-up plan…
20
The College of Physicians
and Surgeons of British
Columbia should amend
Bylaw 3-5(1)(b) to:
• Require that physicians’
clinical records include
a clear record of the
health care consent
process, including:
• who provided, or
refused to provide,
informed consent;
• how consent was
provided; and
• when the informed
consent was
provided; and
• Clarify how to update the
record when the physician
is prescribing medication
over the telephone,
or through another
osite method.
The College should also
educate members regard-
ing changes to the bylaw.
215
ere is no explicit requirement in the HCCA, the College bylaws, or elsewhere that
physicians document the consent process other than the Form 1 for major health
care noted above.
961
e Ministry of Health, in its “Health Care Providers’ Guide
to Consent to Healthcare”, states that “while the [Health Care Consent Act] does
not specically deal with the issue of documenting consent, it is important to docu-
ment accurately and completely all decisions made and actions performed”, and that
“[f]ormal documentation of the fact that consent has been obtained on a chart or
a consent form is advised whenever practical”.
962
e Project Advisory Committee
viewed a bylaw amendment as a more expedient and eective means of encouraging
documentation of consent than law reform.
7.2.4 Understanding Dementia and Supporting Capacity
A number of practice issues discussed in this chapter, particularly assumptions
that people living with dementia do not have capacity to consent to health care,
betray lack of knowledge about dementia. is dynamic is reinforced by the above
comment regarding a mandatory geriatric component to physician training. e 2016
Senate Committee report on dementia in Canadian society similarly identied lack
of specially trained health professionals to care for Canada’s aging population, as
well as a lack of basic education in elder care, as signicant practice issues. ey
recommended that:
…the proposed Canadian Partnership to Address Dementia, within
the context of the National Dementia Strategy, in collaboration with
provincial governments, medical faculties, nursing programs, and their
regulatory and licensing bodies, address health human resource capac-
ity, training and professional development with respect to aging and
dementia care.
963
A number of stakeholders living with dementia also said that informed health care
consent was undermined by the family physician’s lack of knowledge of medication
they were prescribing to treat symptoms of dementia and memory loss.
RECOMMENDATION 20
Some family medicine residents still graduate from their training program, and have
never set foot in a nursing home. It’s not a mandatory piece of education, like how to
catch a baby is mandatory, [and] having paediatrics is mandatory. But community
geriatrics or any geriatrics is not mandatory in a lot of programs across the country.
– Physician
216 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
At this time some dementia training is available to health care professionals and HCAs. e 2015
HCA Provincial Curriculum and Supplement emphasizes the role of the HCA in caring for clients
with dementia and mental health disorders, palliative care and supporting families. Douglas College
oers an online course on Dementia Care based on the HCA Provincial Curriculum.
964
e health
authorities periodically oer the Gentle Persuasive Approach (GPA) training to health care sta. e
GPA is a one-day evidence-based training program that helps care providers deliver person-centred,
compassionate care to people living with dementia.e curriculum focuses on personhood, the brain
and behaviour, the interpersonal environment, and gentle persuasive techniques.
965
ere are also a number of voluntary dementia care learning opportunities available on the Provincial
Health Services Authority Learning Hub. e Learning Hub is a centralized learning management
system which allows each of the health authorities to make available online courses for their employ-
ees, medical sta, aliates, students, and volunteers, as well as operating as a registration for in-person
courses. A number of courses on dementia care, aimed at a variety of audiences, are available on this
website. For example, courses include:
• A one-day Dementia Care Forum for all sta caring for older people in Vancouver Coastal
Health Residential Care;
• A three-hour online course titled “Dementia Care: Fundamental Knowledge, Skills
and Competencies for Providing Person-Centred Care aimed at all health care
professionals and sta;
• A one-hour online “P.I.E.C.E.S. Overview for Residential Care” aimed at sta working
in long-term care and mental health care settings working with older people living
with dementia;
966
• An interactive, game-based online learning program for anyone working with patients
with dementia.
967
Dementia education is one of the Alzheimer Society of B.C.’s strategic priorities. e Society delivers
a six-hour workshop, tailored to meet the needs of participants, called Building a Strong Foundation
for Dementia Care. e workshop is provided across the province, currently on a request basis, but with
a plan to initiate more purposeful targeting of the workshop going forward. e workshop is suitable
for a wide variety of health care professionals and sta, including HCAs, home support sta, and sta
working in day programs and public housing. e Society also recently partnered with SafeCare BC
to provide a modied workshop to several hundred care providers under the title Creating Connections:
Working with Individuals with Dementia.
968
e Ministry of Health’s 2016 Provincial Guide to Dementia Care in British Columbia: Achievements
and Next Steps recognizes the need for health care professionals to receive training in both the diag-
nosis and management of dementia.
969
To this end, the Ministry of Health identied the goal of
improving “health-care professional and caregiver knowledge and ability to deliver safe, well-informed
dementia care using best practices,” with the specic deliverable to “[i]ncrease and sustain consistent
dementia training for health-care professionals and caregivers – including cultural competency train-
ing – in all care settings.”
970
Another resources is the Ministry of Health, BC Best Practice Guideline
for Accommodating and Managing BPSD, which includes the BPSD Algorithm developed by the
21
The provincial health authori-
ties should deliver training on
dementia to all sta provid-
ing services or care to older
people (including, but not
limited to, nursing profes-
sionals, health care assistants,
community health workers,
social workers, and physicians)
with the goal of advancing
knowledge, undermining
myths, and reducing stigma.
217
Interior Health Authority’s Antipsychotic Drug Review Committee to support sta
to take a person-centered approach to responding to BPSD, and consider alternatives
to anti-psychotics.
971
Based on this review, good resources on dementia do exist. However, based on
our stakeholder consultation, and the views of members of our Project Advisory
Committee, many health care professionals and sta working in long-term care,
community, and acute care require better foundational knowledge of dementia,
particularly as this knowledge relates to capacity for health care decision making.
People living with dementia will have varying capacity to participate in decision
making and communicate their views about health care. For example, key informants
noted that time of day and stress can impact on capacity to participate in health
care decision making. Engaging people living with dementia in health care decision
making requires creating the circumstances in which they will have the best oppor-
tunity to participate.
Health care professionals and sta should consider how to support capacity both at
the time of the incapability assessment, and also in the context of decision making
involving substitute decision makers, who have a duty to involve the person in deci-
sion making. Accommodation should be built into the incapability assessment
process. In order words, the question is not just “can this person make the health care
treatment decision at issue on their own?” but rather “can the person make the health
care decision if provided with available supports?” e requirement for accommo-
dation through supportive communication is specically imbedded in the HCCA.
However, other strategies may further support capacity. e Law Commission of
Ontario recommended this approach to incapability assessment and accommodation
in its report on Legal Capacity, Decision Making and Guardianship.
972
e Commission
recommended its health care consent statute be amended to clarify:
a) that legal capacity exists where the individual can meet the test for capacity
with appropriate accommodations, and
b) the requirement that assessments of capacity be carried out in accordance with
the approach to accommodation developed under domestic human rights law.
973
You’re always contacting the resident until the resident can’t be involved, and so even a person
with dementia has got a lot of capacity to be involved in their own decision-making.
– Former Director of Care
RECOMMENDATION 21
22
In order to better support
the practice of all health
care professionals and
sta, a best practice guide-
line should be developed
which addresses how to:
• Engage people who are
living with dementia
in health care decision
making; and
• Maximize the capacity
of people living with
dementia to participate in
their health care decisions.
218
As discussed above, our research indicates that there exist various resources and best
practice tools regarding aspects of care for people living with dementia. However,
we have not been able to nd any comprehensive best practice tools for health care
professionals and sta on the topic of supporting people living dementia to partic-
ipate in health care decision making. Based on our consultation, and the expanding
scope in BC of the duty of substitute decision makers to involve people who may
not have full decisional capacity in health care decision making, greater guidance to
support practice is needed.
7.2.5 The Role of the Mental Health Act in Treating People Living
with Dementia
Consultation with both family caregivers and key informants indicates that the MHA
is sometimes being used to involuntarily commit older people living with dementia.
As the quotation on the following page illustrates, the rationalization for committal
is sometimes not consistent with the law.
e topic of involuntary committal is relevant to the Health Care Consent Project
because people committed under the MHA do not have a legal right to make psychi-
atric treatment decisions, regardless of whether or not they are capable of making
such decisions. Involuntary patients in BC are “deemed” to have consented to any
psychiatric treatment authorized by the director of a designated facility.
974
Consent
to health care for a physical illness or injury, or any health condition, other than the
psychiatric disorder for which the person was committed, is governed by the HCCA,
despite any involuntary admission.
Under the MHA a person may be involuntarily admitted to a designated psychiatric
facility for examination and treatment upon the certied opinion of a physician that
the person has a “mental disorder”, and the person:
(i) requires treatment in or through a designated facility,
(ii) requires care, supervision and control in or through a designated facility to
prevent the person’s or patient’s substantial mental or physical deterioration or for
the protection of the person or patient or the protection of others, and
(iii) cannot suitably be admitted as a voluntary patient.
975
e statute denes “person with a mental disorder” to be:
a person who has a disorder of the mind that requires treatment and seriously
impairs the person’s ability
(a) to react appropriately to the person’s environment, or
(b) to associate with others.
976
RECOMMENDATION 22
7 | Discussion and Recommendations 219
One of the impacts of committal is that neither the person living with dementia nor
family members, substitute and supportive decision makers for health care have a
legal right to make any health care treatment decisions related to psychiatric treat-
ment, or to participate in decision making regarding psychiatric treatment. Stories of
family caregivers indicate that involuntary committal is occurring even where spouses
say they are actively involved in care, and feel they were working with the health care
team to access appropriate care. ese consultation ndings raise questions regarding
whether committal is occurring when a person could be admitted voluntarily through
the substitute decision maker.
As discussed above, dementia is now considered a mental disorder.
977
However, not
all clinicians and legal experts are of the view that dementia itself, in the absence of
any other mental illness, is a disorder of the mind that requires psychiatric treat-
ment that would meet the denition of the MHA criteria. Based on our consultation,
many physicians and geriatric psychiatrists hold the view that under certain circum-
stances it may be appropriate for people living with dementia to be involuntarily
committed. People living with dementia may require psychiatric treatment speci-
cally for symptoms associated with their dementia, or due to another mental illness;
however, mental health facilities were not set up to address the complex care needs
of older people.
Interviews with key informants regarding practice under the MHA identied a
number of factors that could contribute to a physician’s decision to involuntarily
commit older people living with dementia. Importantly, none of these concerns
directly relate to the legal criteria for involuntary committal under the MHA. Issues
identied included:
1. e physician is concerned about self-neglect, or lack of safety
in the home:
• e care facility admission provisions have not been brought
into force. As a result, if a person does not have capacity, or a
representative or guardian, there may be no person legally entitled
to consent to admission to a care facility.
• e MHA process is more familiar to health care professionals
than the emergency provisions under part 3 of the Adult
Guardianship Act (AGA).
2. e physician thinks involuntary committal will help the person living
with dementia to gain access to more appropriate and timely mental
health services. One family caregiver conrmed she was asked to agree to
an involuntary committal for her husband as a means of getting access to
particular services.
• Some facilities appear to require that a person be involuntarily
committed under the MHA in order for them to gain admission to
that facility.
People are not comfortable.
And even families, they’re not
comfortable with being the
one that are saying, ‘Now
mommy, you have to go to
hospital. I can’t look after
you anymore.’ That’s a very
dicult position to be in. So,
the Mental Health Act actually
save them that discomfort.
– Geriatric psychiatrist
23
The BC Ministry of Health
should develop a prov-
ince-wide policy on whether
and under what circum-
stances, if any, the use of
involuntary commitment
under the Mental Health
Act is appropriate for older
people living with dementia.
220
3. e physician wants greater control over decision making:
• e physician wants to be able to transfer the resident quickly to
another location, for example, from long-term care to a hospital, if
the person’s behaviour becomes challenging for the long-term care
environment.
• e physician is concerned that substitute decision makers will
delay the process of transferring an adult from hospital to a long-
term care either because they are not emotionally ready to make the
decision, or there is lack of agreement amongst family members.
4. e physician recognizes that police ocers will be more willing to
intervene to support transfer of a patient who has been involuntarily
committed than transfer of an adult who is receiving services under the
emergency provisions of part 3 of the AGA.
978
Further, comments by one geriatric psychiatrist suggested the MHA was being used
to alleviate the family member acting as substitute decision maker from the stress of
health care decision making. We understand that within some health care profession-
als have been instructed by counsel that involuntary committal is appropriate where
people living with dementia do not have the capacity to consent to admission to a
care facility, and there is no guardian or representative with authority to consent on
their behalf.
It is deeply concerning to hear physicians articulating the above factors as rational-
ization for involuntary committal. Overall, while we have not conducted a robust
review of MHA practice vis-à-vis people living with dementia, comments by both
health care professionals and family caregivers raise serious concerns about inap-
propriate use of the MHA to treat people living with dementia. We are concerned
that the MHA is being used to facilitate a placement when other options could have
been tried, and consent could have been obtained from either the person living with
dementia, with or without the support of a supportive decision maker, or by a substi-
tute decision maker.
Some comments by physicians betray a lack of understanding of the MHA and the
AGA, and lack of respect for the rights of supportive and substitute decision makers
to participate in health care decision making. e notion that adequate mental health
services should only be available to a person living with dementia if they are being
involuntarily (and not voluntarily treated) is concerning.
In the scenario whereby a person living with dementia is involuntarily committed, the
person is typically placed in a designated mental health facility, usually a hospital, and
detained pursuant to the involuntary admission procedures set out in section 22 of
the MHA, that is to say, for 48 hours upon certication by a physician that the person
is “a person with a mental disorder” and in need of protection
979
, and up to one month
upon certication of a second medical physician.
980
is period can be renewed on an
24
The provincial health author-
ities, on behalf of the BC
Ministry of Health, should
develop a system to:
• Collect data regarding
the use of the involuntary
commitment and
extended leave
provisions of the Mental
Health Act;and
• Make its ndings publicly
available through annual
reporting of statistics.
The data collected should
enable an analysis of how
theMental Health Actis
used with older people
living with dementia by
tracking information on:
• The demographics of
people detained, such
as age, gender, and
diagnoses; and
• WhatMental Health
Actpowers are used, such
as involuntary admission
frequency and duration,
frequency and duration
of extended leave,
location of extended leave
placements, and recalls
from extended leave.
221
ongoing basis.
981
Subsequently the person can be put on leave with the condition that
they reside in a long-term care facility. Section 37 provides:
“…if the director considers that leave would benet a patient detained
in the designated facility, the director may release the patient on leave
from the designated facility providing appropriate support exists in the
community to meet the conditions of the leave.”
982
Although the adult is no longer residing in a designated psychiatric facility, they are
still “patients” for the purposes of the MHA, and subject to its regulation,
983
and so
substitute decision makers—both those appointed by a court, and those chosen by the
older person— lose their authority in relation to treatment related to the psychiatric
disorder. Consequently, medications can be administered without the right to refuse
consent to such treatment: consent authorized by the medical director is deemed to
have been provided by the patient. While the physical health care needs still require
consent according to the provisions of the HCCA, one Project Advisory Committee
member indicated that consent to non-psychiatric treatment is not always being
properly obtained, and the deemed consent provisions are sometimes illegally applied
to all health care.
e Ombudsperson’s Best of Care report notes that the use of the MHA to involun-
tarily admit seniors to long-term care facilities has serious impacts on their civil liber-
ties. e Ombudsperson noted that using the MHA to admit a senior to a designated
facility for treatment, including treatment for dementia, should be “an extraordinary
situation” where to do so is the “only viable option that will allow for his or her protec-
tion.”
984
As a result, the Ombudsperson recommended that: “seniors’ civil liberties
are appropriately protected by working with the health authorities to develop a clear,
province-wide policy on when to use sections22 and 37 of the MHA to involuntarily
admit seniors to mental health facilities and then transfer them to long term care.”
985
According to the Ombudsperson’s 2015 updates, there have been no steps toward
implementation of this recommendation to date.
986
Although we have only scratched the surface of this topic, there appears to be a need
to support better understanding of when the MHA is an appropriate medical inter-
vention for people living with dementia, and to monitor use of the MHA for older
people living with dementia.
Implementation of the HCCA care facility provisions may result in a reduction in
use of the involuntary committal provisions for older people living with demen-
tia; however, based on our consultation, the use of the MHA for people living with
RECOMMENDATION 23 PAGE 220 SIDEBAR
RECOMMENDATION 24
222 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
dementia does not appear to be strictly limited to circumstances where no one has the
authority to consent to admission. Moreover, the care facility provisions will have no
impact on the criteria for committal under the MHA.
7.2.6 Practice Support for Sta
Health care professionals shared that circumstances arise in which people living with
dementia appear to lack capacity to make a health care treatment decisions, and it
is unclear who may be able to provide substitute consent. Particularly challenging
circumstances exist when various family members have dierent views regarding care,
or when people living with dementia seems to have neither family nor close friends to
act as temporary substitute decision maker under the HCCA. Sometimes health care
professionals do not know from whom they should obtain consent. ere is confusion
about the role of the PGT with respect to health care decision making.
A number of physicians and directors of care indicated they can spend a lot of time
phoning dierent agencies when a challenging consent case arises. ere is a lack of
clarity regarding who to call for practice support: does a person call their College?
Licensing? Risk management? e PGT? Chasing down an answer diverts valuable
time resources from patient care. ese circumstances can be distressing for people
living with dementia, family, friends, health care professionals, and sta.
Stakeholder interviews suggest that in acute care social workers often provide
one-on-one education to families, physicians, and patients. Ethicists and hospital
ethics committees also play a role in supporting best practice. Risk managers can also
be a good resource. In addition, adult abuse and neglect specialists play an educational
role with respect to the AGA and related matters, which can include consent and
capacity; however, the consultation portion of that role leaves little time for educa-
tion, as crisis management with respect to specic cases is time consuming.
We have learned that one health authority has a dedicated position for which the
primary role includes education of health care professionals and the public with
respect to advance care planning, informed consent, and substitute decision making.
Several stakeholders noted the positive impact of that position in terms of knowl-
edge of sta and health care professionals. Consultation ndings indicate that social
workers across the region are supporting health care sta and physicians to better
understand and apply health care consent law.
We spoke with a number of contacts within the provincial health authorities to clarify
the availability of social workers across BC to support physicians and sta to deliver
health care to people living with dementia, and obtain proper consent to treatment.
Based on our limited research:
For the most part, when
folks go into a residential
care setting, and become
one of 50 or 100 patients,
the general way of working
is that we assume there
is consent because they
are not challenging.
– Health authority sta
25
The provincial health authori-
ties should explore strategies
to increase resources, such
as social workers, available
to all employees, physicians,
and contractors who work in
long-term care, and home and
community care, to ensure
they fully understand their
obligations with respect
to health care consent and
substitute decision making
processes, including the role
of Public Guardian and Trustee
in a manner which reects
the Health Care (Consent) Care
Facility (Admission) Act, the
Representation Agreement
Act, and other relevant
provincial legislation.
223
• Some long-term care facilities which are owned and operated by the
health authorities have a social worker;
• Some long-term care facilities under the Hospital Act have a social worker,
as do other acute care facilities (eg. hospitals);
• Social workers in the role of Family and Social Support Practitioners play
a support role for the entire Home Health Team; and
• Some contracted long-term care facilities have a social worker.
Our ndings underscore a need for better support of employees and physicians in
terms of understanding health care consent, substitute decision making process, and
the role of PGT. However, the problem is not strictly due to lack of stang, but rather
lack of awareness of social worker support available to health care sta to help them
to understand the law.
is support role could be fullled by appointing a designated sta person, or by
adopting a team approach according to which various sta play a role in providing
information and support. Project Advisory Committee members expressed a concern
that this role not be added to the job description of abuse and neglect specialists with-
out extra resourcing being provided.
A concern has been raised regarding whether health authority sta ought to provide
support not only to employees but also to physicians in private practice and directors
of independently owned care facilities. Health authorities do not have obligations to
non-owned and operated facilities, or physicians who are generally not employed by
the authorities in sta positions. However, there is past practice of providing such
support with respect to other quasi-legal topics, such as, most recently, with respect
to Medical Assistance in Dying resources. e Project Advisory Committee felt that
providing consistent information regarding health care consent to all sta and physi-
cians would be benecial to supporting best practice.
RECOMMENDATION 25
224 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia224
7.3 ADDRESSING SYSTEMIC BARRIERS TO INFORMED CONSENT
A robust discussion of the circumstances surrounding health care consent should not ignore the prac-
tical realities of health care delivery. Stakeholders identied a number of structural and systemic issues
that pose barriers to health care consent for people living with dementia. Strain on time and resources
in long-term care were recurring themes. Key informants identied both composition and number of
sta in long-term care as barriers to good practice, including under-stang, and lack of on-site physi-
cian presence. Systemic changes could both enhance practice among all members of the health care
team, and support people living with dementia and their supportive and substitute decision makers to
have meaningful conversations with heath care providers about their desires, needs and concerns with
respect to health care. In this part of Chapter 7 we discuss:
1. Stang composition and levels in long-term care;
2. Physician remuneration; and
3. Participation of marginalized communities in health care decision making.
7.3.1 Stang Composition and Levels in Long-Term Care
Stang in long-term care facilities is largely governed by the CCAL Act and the RC Regulation. e
CCAL Act does not regulate either stang levels or stang composition. e RC Regulation requires
that there be employees on duty at all times that can eectively communicate with all residents, and
provide supervision. e RC Regulation stipulates broadly that:
…the employees on duty are sucient in numbers, training and experience, and organized in an
appropriate stang pattern, to
(a) meet the needs of the persons in care, and
(b) assist persons in care with the activities of daily living, including eating, moving
about, dressing and grooming, bathing and other forms of personal hygiene, in a manner
consistent with
the health, safety and dignity of persons in care.
987
Both the CCAL Act and the RC Regulation also contain language obliging the licensee to employ only
persons of good character, and to review references and provide training.
988
It would be dicult, from a workow perspective, to be phoning, and tracking down SDMs
[substitute decision makers]every time you needed to change a medication order.
– Director of care
7 | Discussion and Recommendations 225
Hospitals under Part 2 of the Hospital Act, which include extended care hospitals, are also subject to
limited regulation with respect to stang. Neither the Hospital Act nor the Hospital Act Regulation stip-
ulates minimum stang requirements; however, in terms of stang composition, a licensed hospital
must have a superintendent who is:
(a) resident on the premises and
(b) a medical practitioner, a member of the Registered Nurses’ Association of British Columbia or a
graduate nurse whose qualications are approved by the chief inspector.
989
Stang ratios in long-term care are an issue of contention. While there are no statutorily mandated
stang ratios, in 2009 the BC Ministry of Health provided regional health authorities with a recom-
mended guideline of 3.36 hours per resident day of Direct Care Hours. e guideline included three
hours for nursing care (registered nurses, licensed practical nurses, and health care assistants) and 0.36
hours for supporting care (physical, occupational, and recreational therapists; speech language pathol-
ogists; social workers; and dietitians).
990
ese Ministry of Health stang guidelines are not currently being met by many facilities. In 2018
the Oce of the BC Senior’s Advocate reported in its Residential Care Facilities Quick Facts Directory
for 2016/2017 that 85% of government funded long-term care facilities did not meet the Ministry of
Health’s guideline of 3.36 Direct Care Hours per resident day, with a facility average of 3.11 Direct
Care Hours being provided.
991
e Residential Care Stang Review by the Parliamentary Secretary
for Seniors released in March 2017 set out an action plan for stang in long-term care which includes
a plan to increase Direct Care Hours, and to implement a province-wide standard in funding and
monitoring to support health authorities to reach stang levels which achieve the recommended 3.36
direct-care hours per resident day averaged across the health authority.
992
Also, in March 2017, the BC Government announced an increase in investment in seniors care of $500
million over four years directed at implementation of the government’s Action Plan to Strengthen
Home and Community Care for Seniors (“e Action Plan”).
993
e Action Plan includes a commit-
ment by the Ministry to complete the actions identied in the Residential Care Stang Review
by 2020, in collaboration with the Oce of the Seniors Advocate, other provincial ministries (e.g.,
Advanced Education and Jobs, Tourism and Industry), health authorities, industry partners, and other
stakeholders.
994
e Ministry has estimated that an additional 1500 full-time equivalent sta will be
required to meet the target Direct Care Hours.
995
226 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
It is beyond our expertise as a legal research and law reform body to develop a recom-
mendation on stang levels or care ratios in long-term care. However, we note that a
number of groups recommend higher numbers than the Ministry of Health’s target.
e Canadian Centre for Policy Alternatives has recommended that “direct care
stang should be set at a minimum of 4.1 hours per resident per day.”
996
e BC
Nurses Union recommended that total nursing sta hours should be 4.55 per resident
day, with one regulated nurse for every 25 residents, noting that increased contact
with a regulated nurse results in a decrease in failure to rescue rates.
997
e Hospital
Employees Union recommended a longer term goal of 4.1 hours of direct personal
and nursing care as provided by HCAs, LPNs and RNs, and that this number be
indexed to rise with resident care needs.
998
In a 2017 report, Ontario indicated its plan
to increase direct care hours to a provincial average of 4.0 hours per resident day.
999
In terms of stang composition, health care consent in long-term care engages the
practice of many dierent health care professionals and sta. Long-term care services
are provided on a day-to-day basis by community health workers and health care
assistants (HCA). In addition, nursing services may be provided by licensed or regis-
tered nurses, including certied practice nurses and nurse practitioners.
1000
Other
health professionals, such as pharmacists, physical therapists, occupational therapists,
and speech and language pathologists also provide their specialized services. Family
physicians, geriatricians, and geriatric psychiatrists provide medical diagnostic and
treatment services.
1001
Stakeholder consultation indicates that a particular challenge in relation to stang
is that it is dicult to nd the time to properly address family conicts and family
caregiver needs for support with health care treatment decisions. Health care sta
nd the pressure to mediate family disagreements and support family caregivers
with health care decision making takes time away from pressing patient care in the
context of an already over-burdened system. Key informants also noted that opti-
mal person-centered care for people living with dementia requires more time and
resources than are currently available, and that anti-psychotics are sometimes the
most appropriate solution partly due to stang issues.
It appears that a key stang gap in some long-term care facilities from a health
care consent perspective is an absence of social workers to support decision making,
especially in emotionally challenging circumstances where trauma, loss, and conict
are negatively impacting the decision making process. Key informants noted that
in acute care, and where available, in long-term care, social workers play a positive
role in supporting families to understand their rights and responsibilities. However,
as noted in our discussion of recommendation 25, social worker assistance is not as
widely available to people who have a family member living in long-term care. is
is particularly true in privately owned facilities, although some private care facili-
ties do employ social workers to support families, and nd them to a be a tremen-
dous resource. Given their training in understanding legal systems and supporting
communication, social workers could be an excellent resource for assisting residents,
A doctor is prescribing life
altering meds—without even
seeing the person in person.
– Family caregiver
26
The provincial health authori-
ties should explore strategies
for making social work services
more available in order to
better support older people
living with dementia, their
family members, and their
supportive and substitute
decision makers with health
care decision making.
227
family members, and substitute and supportive decision makers to advocate for their
right to participate in health care decision making.
7.3.2 Physician Remuneration
Physicians identied billing codes and fee structures as posing barriers to taking the
time for fulsome discussion regarding medication risks and care options, and length-
ening appointments to accommodate communication and understanding challenges
people living with dementia may experience. Facilitating the ability of physicians to
bill for more lengthy appointments for patients with impaired capacity could support
better health care consent practice. Further, introducing bill codes for lengthy inca-
pability assessments could also support more robust and regular assessment of inca-
pability to make health care treatment decisions.
Currently, there are four funding models for physician remuneration in BC:
• Fee-for-service (FFS);
• Alternative Payment Programs (APP);
• Medical On Call Availability Program; and
• Rural Funding.
1002
e main two models used in BC are FFS and the APP, with the majority of physi-
cians being compensated under the FFS model.
1003
Under the FFS model, physi-
cians receive payment from Medical Services Plan (MSP) per service they provide to
their patients, using a separate billing code to identify the type of service provided.
Under this model, physicians are essentially self-employed professionals. e Medical
Services Commission administers the Medical Services Plan (MSP) under the
authority of the Medicare Protection Act.
1004
MSP insures its registrants for medi-
cally required services provided by general practitioners, specialists, and some other
health care professionals, paying them on a FFS or APP basis.
1005
Physicians must
be enrolled with MSP in order to receive payments, and must be licensed with the
College of Physicians and Surgeons to be eligible to enroll in MSP.
1006
An enhanced
fee-for-service program is available in most provinces and territories in Canada,
RECOMMENDATION 26
Families need to feel comfortable that they can, you know they aren’t bothering
a physician in his busy oce to talk about somebody… They need to be heard,
and they need to be, you know, kind of respected. And that takes time.
– Physician
228 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
including BC, whereby physicians and some specialties may access additional compensation for
complex and chronic disease management.
1007
As described by Mazowita, an “escalating crisis in family medicine” in the 90s and early 2000’s resulted
in the creation of the General Practices Services Committee, whose mandate was to “nd solutions
to support and maintain full-service family practice in BC.”
1008
Solutions to the crisis in BC largely
revolved around practice incentives for full-service family doctors, training programs, and recruitment
incentives.
1009
By way of comparison, other provinces, such as Ontario, opted for signicant structural
reform.
1010
Financial incentives included new MSP billing fees which allowed for compensation of
telephone or email consultations and group visits.
1011
In addition to these earlier operational reforms, the Ministry of Health’s 2015 Primary and Community
Care Policy Framework highlights further initiatives in this area, such as the Family Practice Incentive
Program. e program currently includes the following incentives:
• Mental health incentive payments for helping plan and manage care for patients with
mental health issues, including dementia.
1012
• Two complex care planning and management incentive payments available to family
physicians,
1013
for patients diagnosed with at least two chronic conditions from a list of
conditions, one of which is a “chronic neurodegenerative disease”. Dementia on its own
would not warrant the use of these codes.
1014
• Palliative care incentive payments for assisting with care planning for palliative patients.
1015
None of the above are available for patients residing in long-term care. However, Residential Care
Initiative incentive payments are available for family physicians to support care in long-term care
facilities, and include the following additional fee payments:
• Patient Telephone Management Fee
• GP Allied Care Provider Conference Fee
• Chronic Disease Management Incentives
• MSP Fees in Residential Care
• Billing for Non-urgent/non-emergent visit
• Billing for Patients in Long Term Care when specially called
• Billing for Patients in Long Term Care when Called to See at Night
• Visits for terminal care
• Billing for phone advice about patients in LTC
• Minor Procedures and Related Tray fees
1016
e Family Practice Incentive Program does not appear to provide any incentive payments to compen-
sate physicians for the time it takes to assess incapability to consent to proposed health care. Neither
does the program provide for any incentive payments which take account of the additional time
27
The Doctors of BC and the
Ministry of Health should
collaborate to develop incen-
tive payments to encourage
and support physicians to:
• Engage in robust
conversations with
patients living with
dementia about health
care treatment decisions
in order to ensure their
consent is informed; and
• Undertake incapability
assessments of patients
living with dementia
where capacity for a
specic health care
decision is at issue.
229
required for physicians to engage in a robust informed consent process with people
living with dementia. Stakeholders consistently stated that family physicians face
signicant time constraints which undermined their ability to engage adequately
in the informed consent process, which includes, as a preliminary step, conducting
an adequate incapability assessment that does not simply rely on the opinion of the
patient or the family member.
7.3.3 Participation of Marginalized Communities in Health Care
Decision Making
Key informants noted that some marginalized communities experience additional
barriers to participating in health care decision making. In particular, a number of
key informants noted that many Indigenous people have a strong distrust of insti-
tutions and white people with authority. Colonization, and the residential school
system in particular, have both damaged people’s sense of autonomy, and generated
trauma and fear, resulting sometimes in a lack of ability to engage with the system,
and other times in a culture of assent. As noted in the Report of the Truth and
Reconciliation Commission, Indigenous people continue to experience racism in all
aspects of health care.
1017
Key informants spoke of low health literacy rates, and a general unfamiliarity with
the health care system, in many Indigenous communities, particularly in northern
remote communities, which impact on people’s ability to ask questions, and provide
informed consent or refusal to health care. In rural northern communities, there are
fewer resources, and so people tend to have less knowledge of their rights. Further,
people who are marginalized may make dierent decisions, value dierent things,
and have less social power, so their choices are sometimes not respected. Practically
speaking, it is harder to participate when you come from a community with limited
internet, where many people cannot aord phone service.
Since long-term care is not generally available on reserve, older people who require
complex medical care may have to leave their communities and families to access
Someone might assume just because I’ve checked my grandmother into this facility
that I’ve sort of given up consent, my responsibility, or something like that, right? It’s
just that low health literacy that were dealing with there, the unfamiliarity with the
health system overall that we’re dealing with. It really gets in the way sometimes
of the patient or the substitute decision maker to make informed decisions.
– Health authority sta
RECOMMENDATION 27
28
The First Nations Health
Authority, Indigenous Health
within the Ministry of Health,
and Aboriginal Health leads
within each of the other
health authorities should
engage in discussions with
Indigenous communities in
order to better understand and
address barriers to informed
consent to health care
experienced by Indigenous
people in British Columbia.
230
appropriate care. ey may feel there is no alternative to residing in facilities that are
not perceived to be culturally and emotionally safe. Language barriers and a lack of
language interpretation pose further barriers, particularly where people are housed
far from family. While education regarding cultural safety and cultural humility is
occurring, and BC health authorities have committed to ensuring sta take what is
termed “Indigenous cultural safety training,” this paradigm continues to exist. e
concept of dementia may have a dierent meaning in some Indigenous communities,
which can contribute further to communication challenges.
Key informants told us that advance care planning documents are not widely used
in Indigenous communities, even as compared with the low uptake in other popula-
tions. ey noted a reluctance to talk about death that can pose barriers to health care
decision making, which raises the question of whether Euro-centric advance health
care planning tools built into our laws and institutions are suitable for all commu-
nities. In addition, the changeover in 2013 from health care on reserves operating
under the federal jurisdiction to the provincial jurisdiction has meant that health care
professionals and sta in those communities are often not suciently uent in BC’s
advance care planning regime to act as educators for these communities.
In BC, Aboriginal Patient Navigator positions began emerging within the provin-
cial health authorities starting in 1986, rst within Northern Health,
1018
in order
to address some of the barriers to health care experienced by Indigenous people.
Navigators are now employed around the province in order to improve the “health-
care experience of Indigenous patients within the hospital system,”
1019
including to
address some of the health care access and literacy issues described above, and the
First Nations Health Authority is now responsible for the program.
Indigenous health care is a broad topic beyond the scope of this research project.
However, our interviews with key informants indicate that Indigenous people
continue to experience uniquely challenging barriers to health care consent that
require further discussion, consultation, and consideration—some of which may
be particularly felt by people living with dementia and their family caregivers. We
encourage further inquiry and discussion from government, non-government and
Indigenous advocacy groups alike in order to explore how to enhance access to
informed health care consent for Indigenous people living with dementia and their
family caregivers.
Stakeholder consultation also highlighted barriers to health care consent related to
language interpretation. Language issues pose a signicant barrier to consent for
non-English speaking and immigrant families. Given scarce time and resources,
interpreters are not always available or sought. Many key informants spoke of rely-
ing on available sta who spoke the language, or other family members, to act as
RECOMMENDATION 28
29
The Ministry of Health
should develop a plan to:
• Expand access to language
interpretation for people
living with dementia
who reside in aliated
or contracted long-term
care facilities, as well as
their family members and
supportive and substitute
decision makers; and
• Improve health care
professional and sta
awareness of language
interpretation services.
231
interpreter. is approach is not always appropriate: non-professional interpreters
may not have adequate knowledge or skills, and family members will sometimes have
their own agenda. Access to professional language interpretation can be crucial to
health care consent, and is arguably required under human rights law.
In BC the Provincial Health Services Authority (PHSA) provides spoken language
interpretation services through its Provincial Language Service (PLS).
1020
e service
is available to health care professionals who work for any agency or service under
the BC provincial health authorities, and to private physicians, including specialist
oces.
1021
Interpretation is provided either onsite, or remotely by telephone or video
conference, and bookings can be made online, or via a 1-800 number that operates 24
hours a day, seven days a week. e service request must be booked by the health care
provider
1022
—not the patient—and interpretation is oered in over 150 languages.
1023
Private oce-based family physicians and nurse practitioners can access a telephone
interpreting service at no cost.
1024
A representative of the PLS booking service recommended that booking onsite
interpreters at least one to two weeks in advance. Telephone interpretation is usually
available immediately for a more common language, or within 5-10 minutes for a
less common language; however, a special booking code for immediate telephone
service is required to make an immediate booking, and is restricted to certain types
of services.
1025
Based on our review the service appears to be fairly comprehensive, with the excep-
tion that health professionals who are employees of private and contracted long-term
care facilities cannot access the service.
1026
Our consultation ndings suggest that the
service has not been adequately promoted among health care professionals and sta.
RECOMMENDATION 29
232 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
7.4 ENHANCING ACCESS TO LEGAL INFORMATION AND REPRESENTATION
REGARDING HEALTH CARE CONSENT RIGHTS
7.4.1 The Right to Review Health Care Consent Decisions
e right to make autonomous health care decisions is a fundamental right protected not just by the
HCCA, but also by the guarantee of life, liberty, and security of the person enshrined in section 7 of
the Charter of Rights and Freedoms.
1027
A nding that a person living with dementia is incapable of
making their own decisions, or a health care decision the person disagrees with, can infringe on this
constitutional right. As the Supreme Court of Canada stated in Carter v. Canada:
e law has long protected patient autonomy in medical decision-making. InA.C. v.
Manitoba (Director of Child and Family Services), 2009 SCC 30, [2009] 2 S.C.R. 181, a
majority of this Court, per Abella J. (the dissent not disagreeing on this point), endorsed
the “tenacious relevance in our legal system of the principle that competent individuals
are — and should be — free to make decisions about their bodily integrity” (para. 39). is
right to “decide one’s own fate” entitles adults to direct the course of their own medical
care (para. 40): it is this principle that underlies the concept of “informed consent” and is
protected by s. 7’s guarantee of liberty and security of the person.
1028
Given the importance of the rights at stake, people who face a loss of health care decision making
autonomy require an accessible forum for challenging ndings of incapability, as well as specic health
care decisions made by a substitute decision maker. Both legal research and stakeholder consultations
identied a lack of procedural fairness rights and access to justice for people with capacity issues, and
people perceived as having reduced capacity, as a key problem facing people living with dementia.
Some health care decisions, such as the choice of TSDM, the interpretation of an advance directive,
or a decision regarding treatment can be reviewed by the Supreme Court of BC pursuant to section
33.4 of the HCCA. Further, the appointment of a committee of the person can also be reviewed by the
court (as is discussed in the following section). Our research did not reveal a single published judg-
ment under section 33.4, which raises the question of whether court-based mechanisms of review are
accessible to vulnerable populations such as people living with dementia.
1029
In recognition of this barrier, BC previously had in place a Health Care and Care Facility Review
Board, which was created when Part 4 of the HCCA was brought into force in 2000.
1030
e board had
the ability to review decisions to give, refuse, or revoke substitute consent to health care. As noted by
I begged them to cut back on the medication... he is under the control of that
doctor… So now they have a free hand.
– Family caregiver
7 | Discussion and Recommendations 233
the Ombudsperson, “the board’s structure and mandate was similar to Ontario’s Consent and Capacity
Board, although with narrower jurisdiction.”
1031
A three-member panel heard review applications, with
hearings to be held within seven days of an application, and decisions had to be made within 72 hours
of a hearing.
1032
Applications for review could be brought by the adult, the adult’s spouse, a relative, or
friend, the substitute decision maker, the adult’s guardian or representative, the health care provider,
a prescribed advocacy organization, or the Public Guardian and Trustee.
1033
A right of appeal of the
board’s decisions existed to the BritishColumbia Supreme Court.
1034
e board was dissolved in March 2004, by the Miscellaneous Statutes Amendment Act (No 3), which
repealed Part 4 of the HCCA.
1035
According to the Ombudsperson, “the Attorney General at that time
explained that the board had only conducted eight hearings in its existence, and that the work of the
board could be more eectively accomplished through other existing dispute resolution processes.”
1036
In a 2006 study paper the BCLI commented, “[s]ince the Board was not particularly active, the impli-
cation was that it must not be worthwhile. However, upon closer examination, the Review Board may
have remained largely dormant because it lacked the correct tools, setup or mandate to ll the capacity
review void.”
1037
e BCLI concluded that:
With the Board’s demise, the capacity review void has only deepened. However ineective,
the Review Board did at least provide a forum in which one could challenge a specic
nding of incapability or health care decision. After it was abolished, the system was left
without a non-court capacity appeal process. is has added to the risk of substantive
deprivation of Charter-protected procedural fairness rights for persons wishing to chal-
lenge a nding of incapability.
1038
Further, it is equally possible that limited use of the tribunal reected lack of awareness.
Capacity review boards currently exist in the Yukon and Ontario. In Ontario, a person may apply to
the Consent and Capacity Board for a review of a health care professional’s nding of incapacity, and
decisions made by substitute decision makers.
1039
In its 2017 report on Legal Capacity, Decision-Making
and Guardianship, the Law Commission of Ontario (LCO) commented favourably on Ontario’s
Consent and Capacity Board as follows:
With respect to the operation of the Consent and Capacity Board (CCB), the sense is
that overall, the exibility of the HCCA appointment mechanisms and the existence of
the CCB as an accessible tribunal providing speedy and relatively responsive adjudication,
30
The Government of British
Columbia should implement
an independent non-court
review mechanism to enable
people to challenge:
• Findings of incapability
to consent to health
care treatment;
• Choice of temporary
substitute
decision makers;
• Care facility admission
decisions; and
• Decisions made by
substitute decision
makers with respect to
the person’s health care,
including the use of
restraints.
The Provincial Government
should engage in robust
research and consultation
to determine the most
appropriate and eective
mechanism, and undertake
education of health care
professionals and sta, and
the general public, when the
process is implemented.
234
is an appropriate approach. Critiques of its operations tend to focus
on the inherent tension between promoting therapeutic outcomes and
upholding fundamental rights, the challenges it faces in meeting its
mandates for timeliness and expertise, and the balance between achiev-
ing timely resolutions and supporting less adversarial approaches to
dispute resolution.
1040
e LCO ultimately recommended expanding the scope of administrative review of
decisions related to capacity and consent through the creation of an expert tribunal
which would be a unied access point for matters related to legal capacity, decision
making and guardianship, whether brought pursuant to the Substitute Decisions Act,
the Ontario Health Care Consent Act or Part III of the MHA.
1041
In addition to this
signicant recommendation, the LCO proposed “a number of measures to broaden
the types of applications that can be brought under the HCCA, improve access to
mediation and other forms of alternative dispute resolution, and to strengthen exist-
ing structures and supports to access to the law”.
1042
e only other jurisdiction which currently provides for review of health care deci-
sions via tribunal is the Yukon. e Yukon Capacity and Consent Board has jurisdic-
tion to review the decisions of health care providers and substitute decision makers,
and to provide direction to substitute decision makers
1043
with respect health care
provider determinations of capacity, health care provider choice of temporary substi-
tute decision maker, substitute decision maker decisions to give or review consent to
major health care, and care facility admission.
1044
e right to review is not limited
to the person subject to decision making: any person with a substantial interest in
the matter can make a request to the Board.
1045
A substitute decision maker may also
seek direction from the Board regarding consent as it concerns the interpretation of
previously expressed wishes.
1046
Similar to the proposed meta tribunal for Ontario,
the Board also has jurisdiction over some decisions made pursuant to the MHA.
e Manitoba Law Reform Commission recommended a similar tribunal in its
review of substitute decision making for health care in 2004, characterizing “speedy,
more accessible and less expensive routes of appeal” than available via the courts
as “extremely important for the protection of incapable patients’ rights.”
1047
In it is
generally understood that, as compared with the court system, tribunals provide better
access to justice for vulnerable populations. As Chief Justice Beverley McLachlin (as
she then was) has noted:
In sum, without administrative tribunals, the rule of law in the modern
regulatory state would falter and fail. Tribunals oer exible, swift and
relevant justice. In an age when access to justice is increasingly lacking,
they help to ll the gap. And there is no going back.
1048
Research and stakeholder consultations suggests it is worthwhile to consider bring-
ing back a capacity and consent review tribunal for BC. is is a large topic, and many
7 | Discussion and Recommendations 235
of the details regarding the appropriate system for BC are beyond the scope of this
project focused on health care consent for people living with dementia.
7.4.2 Legal Representation
Access to Legal Aid for People with Mental Capacity Issues
In Chapter 3 we discuss a range of legal fora for challenging health care decisions and
decision making authority for people living with dementia who may have capacity
issues. Key mechanisms are:
1. Pursuant to the HCCA, a person may apply to court for orders relat-
ing to the implementation and interpretation of advance directives, health
care consent decisions made by substitute decision makers, and incapability
assessment.
1049
On such an application, the court may make a broad range of
decisions, including:
(a) order the adult to attend at the time and place the court directs and
submit to one or more assessments of incapability;
(b) give directions respecting
(i) the interpretation of a provision of an advance directive, or
any other health care instruction or wish, made or expressed by an
adult when capable, or
(ii) who should be chosen to provide substitute consent under this
Act for an incapable adult;
(c) conrm, reverse or vary a decision by
(i) an adult’s representative or personal guardian, or
(ii) a person chosen to provide substitute consent under this Act,
(iii) to give or refuse consent to health care or admission to a
care facility;
(d) make any decision that a person chosen to provide substitute consent
under this Act could make.
1050
2. Pursuant to the PPA, one year after a committeeship order is made, any
person may apply to the Supreme Court for an order that the person is
no longer incapable.
1051
If the application is successful, the person living
with dementia would become entitled to make their own health care deci-
sions, subject to the health care provider’s obligation to make a determi-
nation regarding capacity each time health care is proposed. Alternatively,
They’re basically paralyzed.
They can’t do anything
without the funds to
retain a lawyer.
– Lawyer
RECOMMENDATION 30 PAGE 234 SIDEBAR
236 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
an application can be made to rescind the appointment of a committee, and have another
committee appointed.
1052
3. A patient who has been involuntarily detained under the MHA is entitled to a hearing by
the review panel at specied intervals to determine whether detention should continue.
1053
Judicial review of a determination of a review panel is possible.
1054
In addition, a patient, or a
person on their behalf, who believes that there is not sucient reason or legal authority for
a certicate respecting the patient may apply to the court for an order that the person not be
apprehended, transported or admitted to a designated facility, or be discharged from one.
1055
Further a habeas corpus application can be led to bring the matter of detention before the
BC Supreme Court.
Legal aid is not generally available for advice or representation in relation to the above matters, other
than a review panel constituted by the Mental Health Review Board, although the Legal Services
Society does have some discretion to award funding in unique situations where a person with a mental
illness requires legal advice or representation.
Mental health law is an area of particular concern to people living with dementia and their families.
Comments by family caregivers identied a need for access to legal advice when a person living with
dementia is involuntarily committed under the MHA. At least two informants shared stories of their
spouse being involuntarily committed under the MHA; both appeared very confused about what had
happened, and neither had been advised that they might be able to challenge the decision.
In the civil context, legal aid in BC is largely restricted to family matters, particularly those involv-
ing denial of parenting time or contact with children, violence, harassment, trauma, and the safety
of children, or removal of children from the province.
1056
Legal aid is not available to obtain advice
or representation for people wishing to challenge the following decisions or actions, by way of court
application:
• A formal or informal nding of incapability to make a health care decision;
• A heath care provider’s choice of Temporary Substitute Decision Maker;
• A health care decision made by a substitute decision maker, including a decision regarding
use of a restraint under the RC Regulation
1057
;
• e interpretation by a health care provider or substitute decision maker of an advance
directive or other health-related wish expressed while capable; or
• An application to be appointed committee of the person pursuant to the PPA.
In previous work BCLI has argued for the provision of legal aid in the guardianship context.
1058
e
BCLI asserted that a failure to provide legal aid in situations where fundamental autonomy rights are
at stake may infringe the principles of fundamental justice:
In New Brunswick (Minister of Health and Community Services) v. G.( J.)[J.G.] [[1999]
3 S.C.R. 46, S.C.J. No. 47] the Supreme Court of Canada concluded that the failure to
provide a parent with legal aid in custody proceedings infringed principles of fundamental
7 | Discussion and Recommendations 237
justice. e Court held that, while a blanket right to state-funded counsel does not exist,
a limited right to state-funded counsel arises under section 7 of the Charter where the
seriousness of the interests at stake, the complexity of the proceedings and the capacities of
the parent are such that a fair hearing would not be possible without legal representation.
…
A guardianship application engages the same serious interests, and may involve complex
medical testimony. e capacity of the subject adult has already been placed in question
by the very nature of the proceedings. Hence, legal representation is essential to ensure
that the adult is able to present his or her case eectively. Otherwise, the presumption of
capacity is meaningless.
1059
e BCLI drew an analogy between the serious eects of incarceration, which can trigger legal aid
entitlement, and the potentially serious eects of guardianship.
1060
Consequently, the BCLI has
recommended legal aid be made available for adults facing guardianship proceedings.
1061
Health care
decision making, some of which may include end of life decisions, and major quality of life matters,
can have equally serious eects on liberty.
More recently, several developments in 2017 have highlighted the need for legal aid for civil matters
where mental capacity is at issue.
1. BC non-prot organizations came together to produce a report which identied their
collective priorities for reform and improvement of BC’s justice system.
1062
One of the key
priority areas where they recommended change was expanded funding for coverage of legal
aid in BC for guardianship matters and issues arising pursuant to the HCCA. e report asks
the government to “Ensure genuine access to justice by strengthening legal aid and legal
services”, including to “Extend funding for legal services to all people whose liberty is being
infringed, including under the following Acts: the Adult Guardianship Act, Mental Health Act,
Patients Property Act, Health Care (Consent) and Care Facility (Admission) Act.”
2. A report by Community Legal Assistance Society (CLAS) pointed out that access to
legal aid is particularly urgent for people who have been involuntarily committed, due to
an entitlement to rights advice under the Act that is generally met by assigning health care
sta with no training in the law to provide legal information.
1063
At this time, the CLAS
Mental Health Law Program is only funded to speak with people who have “applied to the
Mental Health Review Board for a review panel hearing, had a hearing scheduled, applied
to the Mental Health Law Program for representation, and been assigned an advocate or
lawyer.”
1064
To remedy this gap in prompt access to rights information and legal advice upon
involuntary committal, the CLAS report recommends that “the Legal Services Society
provide funding for detainees to access legal advice on detention and detention renewal.”
1065
In December 2017 the Canadian Bar Association BC Branch issued a statement in support
of the CLAS report.
1066
3. e Canadian Bar Association BC Branch produced an “Agenda for Justice” ahead of the
2017 provincial elections, detailing the organization’s vision for improved access to justice in
31
The structure of legal aid
should be amended to include
funding for prompt legal
advice and representation
regarding any legal action or
proceeding that could remove
or restore health care decision
making autonomy, including:
• Applications pursuant to
s. 33.4 of the Health Care
(Consent) and Care Facility
(Admission) Act, including
capacity to consent to
admission to a care facility;
• Challenges to applications
for a committee of the
person pursuant to the
Patients Property Act; and
• Involuntary committals,
and reviews of involuntary
committals, under the
Mental Health Act.
238
BC.
1067
A key recommendation was “[a] properly funded Legal Aid Service
available to those who need it throughout BC.”
1068
e new provincial government has recently increased funding for legal aid in the
province after over a decade of funding constraints. However, there remains signi-
cant concern that the increases are not sucient.
1069
Access to legal aid is particularly important for people whose capacity is questioned
because they may not have access to their own funds due to a nding of incapability.
It is our view that British Columbians should be provided with access to legal infor-
mation, advice and representation with respect to any:
• Decision that eectively undermines their health care decision making
autonomy; and
• Mechanism for challenging that loss of decision making autonomy.
Barriers to Capacity to Retain and Instruct Counsel
e test for capacity to instruct counsel is a common law test deriving from the
general principles of contract law, and the law of agency.
1070
e test is considered
to be of a relatively high threshold since it requires an understanding of legal and
nancial issues.
1071
e person must be capable of understanding the retainer’s terms,
and “forming a rational judgment of the eect upon his interests”.
1072
Determining
capacity to instruct and retain counsel requires an assessment of the facts of each case,
and is not the subject of an articulated test.
1073
In contrast, the threshold for capacity to make a section 7 representation agree-
ment for supportive or substitute decision making is generally considered to be
lower.
1074
e Act states explicitly that “[a]n adult may make a representation agree-
ment consisting of one or more of the standard provisions authorized by section 7
even though the adult is incapable of (a) making a contract.”
1075
No guidelines exist,
however, for making this capacity determination; the statute states that in determin-
ing whether an adult is incapable of making a section 7 representation agreement “all
relevant factors must be considered, for example:
RECOMMENDATION 31
Most lawyers are very reluctant to do section 7 Agreements for
somebody that’s obviously got less than full capacity.
– Lawyer
7 | Discussion and Recommendations 239239
(a) whether the adult communicates a desire to have a representative make, help make, or stop
making decisions;
(b) whether the adult demonstrates choices and preferences and can express feelings of approval or
disapproval of others;
(c) whether the adult is aware that making the representation agreement or changing or revoking
any of the provisions means that the representative may make, or stop making, decisions or choices
that aect the adult;
(d) whether the adult has a relationship with the representative that is characterized by trust.
1076
e BCLI has stated that this dynamic creates a legal problem in that a person with capacity issues is
legally permitted to make a representation agreement, but may not be able to retain counsel to assist in
making the agreement: essentially a person living with dementia may have capacity to create a repre-
sentation agreement, but not have capacity to sign a retainer agreement. Key informants commented
that some lawyers are reluctant to assist people who cannot sign a retainer.
e Law Society of BC Code of Professional Conduct for BC imposes some limitations on a lawyer’s
ability to represent “clients diminished capacity;” however, the language of rule 3.2-9 is clear that
lawyers are permitted to represent clients who have capacity issues. e rule stipulates that “[w]hen
a client’s ability to make decisions is impaired because of minority or mental disability, or for some
other reason, the lawyer must, as far as reasonably possible, maintain a normal lawyer and client rela-
tionship.”
1077
e Code includes language that recognizes the variability of mental capacity, and under-
scores that capacity is not determined by disability:
[1] A lawyer and client relationship presupposes that the client has the requisite mental
ability to make decisions about his or her legal aairs and to give the lawyer instructions.
A client’s ability to make decisions depends on such factors as age, intelligence, experience
and mental and physical health and on the advice, guidance and support of others. A
client’s ability to make decisions may change, for better or worse, over time. A client may
be mentally capable of making some decisions but not others. e key is whether the client
has the ability to understand the information relative to the decision that has to be made
and is able to appreciate the reasonably foreseeable consequences of the decision or lack of
decision. Accordingly, when a client is, or comes to be, under a disability that impairs his
or her ability to make decisions, the lawyer will have to assess whether the impairment is
minor or whether it prevents the client from giving instructions or entering into binding
legal relationships.
1078
e language of the Code of Professional Conduct appears to ground the ethical rule in a test deter-
mined by the particular legal matter at issue, which would seem to suggest a lawyer could draft a
representation agreement for a person living with dementia who did not have capacity to enter into
a contract generally. Indeed, in an article entitled, “Acting for a client with dementia”, Law Society
Practice Advisor Barbara Buchanan QC has written:
For statutory tests of capability, look for the relevant statute and how the statute may have
been interpreted by the court. e client may, for example, have the capacity to appoint
32
The Representation Agreement
Act should be amended to
provide that a person with
mental capacity to make a
representation agreement
with standard provisions under
section 7 of the statute also has
the mental capacity to retain
and instruct counsel for the
purpose of advising on drafting
the representation agreement.
240
a representative to help with decisions or to make decisions about
personal care, health care, the routine management of nancial aairs,
and obtaining legal services and instructing counsel under section 7
(standard provisions) of the Representation Agreement Act (RAA) and to
appoint a monitor.
1079
However, in the same article she notes that the inability to enter into a contract with
a lawyer will generally pose a barrier:
However, a lawyer should typically not act for a person who is other-
wise incapable of entering into a retainer agreement with the lawyer.
e Ethics Committee has not, as yet, given an opinion on whether it
would recommend a change to BC Code rule 3.2-9 to clarify whether
a lawyer may act for a client for a section 7 representation agreement
in a situation where the client may be otherwise incapable of making
a contract.
1080
In order to address this legal anomaly, the BCLI has recommended that the RAA be
amended to include the following provision:
An adult who has the capacity to make a representation agreement
consisting of the standard provisions authorized by section 7…
is deemed to have the capacity to retain and instruct counsel for the
purpose of advising on and drafting the representation agreement.
1081
e recommendation of the BCLI, which may resolve the lack of clarity through a
legislative amendment, has not been implemented. We reiterate it here.
However, lawyers may still run into barriers in terms of enforcing payment. e
Law Society does not appear to be concerned with lawyers drafting representation
agreements on a pro bono basis, nor with lawyers practicing with non-prots, such
as Seniors First BC representing clients with capacity issues who require section
7 agreements.
7.4.3 Knowledge of Health Care Decision Making Rights and
Responsibilities
Information Provided on Admission to Long-Term Care
Based on our consultation with stakeholders, many family caregivers understand
their rights and responsibilities as substitute or supportive decision maker for health
RECOMMENDATION 32
7 | Discussion and Recommendations 241
care. We also noted that some people living with dementia and their family members
require a better understanding of their rights and responsibilities as part of the health
care consent process. Certainly all focus group participants valued the legal informa-
tion component of the Health Care Consent Project consultation sessions. Many
health care professionals and social workers also expressed concern that substitute
decision makers do not understand their role.
Various agencies in BC are engaged in providing public legal education about
substitute and supportive decision making, and health care consent. Nidus Personal
Planning Resource Centre and Registry has developed fact sheets on health care
consent, and delivers information sessions on the topic in community and to profes-
sionals. Health care rights materials have also been produced by Seniors First BC,
the BC Health Coalition, the PGT, and the Ministry of Health. ere appears to be a
fairly reasonable amount of accurate written information available online that would
be accessible to people with a high level of English literacy who know how to conduct
research online, or how to nd a referral to an advocacy agency for assistance.
Family caregivers desire strategic guidance on how to exercise their rights and
responsibilities, and support when they are struggling to exercise their health care
decision making rights and responsibilities, particularly within long-term care. Many
caregivers reported great diculty accessing any information about the person living
with dementia’s care, or getting sta to address their concerns about care. As a result,
we recommend more proactive eorts to ensure long-term care residents, family care-
givers, and substitute and supportive decision makers understand their rights and
responsibilities with respect to health care consent. We have identied three possible
law or policy sites for reform mandating that long-term care facilities provide infor-
mation with respect to health care consent and substitute and supportive decision
making to residents and their families at the time of admission:
1. e care facility admission provisions of the HCCA or associated
regulations;
2. Section 48 of theRC Regulation, which currently requires that licensees
provide certain advice to incoming residents or their representative
prior to admission, including information on the “the policies of
the community care facility respecting expressing concerns, making
complaints and resolving disputes” as well as information on the facility’s
complaint processes; and
3. With respect to publicly subsidized care facilities, the Ministry of Health
develops policies set out in the Home and Community Care Policy
Manual on which the health authorities must base their own operational
policies and procedures.
We leave it to future discussion to determine the most impactful site of reform
on this issue. However, we note that care facilities may require support from the
“I think most residential
care sites have some kind
of welcome packet or intro
packet and put lots of
dierent pamphlets and
information in there. I think
it would be great to have
some information on what
it means to be a substitute
decision maker or temporary
substitute decision maker.
– Social worker
33
Long-term care facilities should
be required to provide writ-
ten educational information
on health care consent rights
and substitute and support-
ive decision making rights
and responsibilities to both
residents and their substitute
or supportive decision makers
at the time of admission, or
shortly thereafter. Such infor-
mation should be provided in
the language they prefer, or
where that is not possible, read
to them through the use of a
professional interpreter as soon
as can be practically arranged.
34
The Government of BC should
develop a comprehensive
public education plan regard-
ing supported and substitute
decision making for health
care, including representa-
tion agreements, and also
including additional funding
to non-prot agencies to
further engage in this work.
242
Ministry of Health or the provincial health authorities in order to enhance their
eorts in this area.
Representation Agreements and Supported Decision Making
As discussed throughout this report, in BC supported decision making relation-
ships can be legally recognized by way of representation agreements. Consultation
revealed that many people living with dementia and their family caregivers consider
health care decision making a collaborative activity, and desire greater inclusion of
their supportive decision makers in decision making and care. However, it appears
that lack of knowledge of formal supported decision making through representation
agreements is pervasive among health care professionals and other sta, people living
with dementia, and family caregivers. Key informants indicated that representation
agreements are rarely used.
e lack of uptake of supported decision making for health care raises concerns
regarding the extent of public legal education with respect to representation agree-
ments. While many non-prot agencies in BC are engaged in teaching people about
representation agreements and supported decision making, widespread public educa-
tion is required, particularly if supported decision making is to be further embedded
into the HCCA.
I think there’s a lot of misconceptions about what the representative can do. I think
there’s a lot of confusion about power of attorney versus representative, and what kind
of decision-making they can each do, and like I said, I think that confusion is amongst
patients, it’s amongst health care professionals, [and] I think it’s amongst legal counsel.
– Pharmacist
RECOMMENDATION 34
RECOMMENDATION 33
7 | Discussion and Recommendations 243243
244 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
LAW REFORM
Recommendation 1
e Health Care (Consent) and Care Facility (Admission) Act should be amended to recognize that
capacity can vary in the following manner:
• A person may be incapable with respect to some decisions regarding treatment, and
capable with respect to others; and
• A person may be incapable with respect to a treatment at one time, and capable at another.
Recommendation 2
e Health Care (Consent) and Care Facility (Admission) Act should be amended to state that every
adult, regardless of capacity, has the right to:
• Receive support in decision making provided by a family member or friend whom they
trust, if they choose to do so; and
• Be involved to the greatest degree possible in all case planning and decision making.
Recommendation 3
e Government of BC should consider amending the Health Care (Consent) and Care Facility
(Admission) Act such that the right to support, and the right to participate in case planning and deci-
sion making, apply to all adults, including adults currently excluded by the combined impact of section
2 and the deemed consent provisions of the Mental Health Act.
Recommendation 4
Section 81 of the Residential Care Regulation should be amended to clarify that informed consent of
the resident, or the substitute decision maker if the resident does not have capacity to consent, must
be obtained prior to nalizing or amending any aspects of the resident’s care plan that relate to health
care treatment.
Recommendation 5
e Residential Care Regulation should be amended to require that care facilities maintain detailed
policies on sta and health care professional obligations with respect to health care consent and substi-
tute decision making processes, including the role of Public Guardian and Trustee, which reect the
Health Care (Consent) Care and Facility (Admission) Act, the Representation Agreement Act, and other
relevant provincial legislation.
APPENDIX A
List of Recommendations
Appendix A | List of Recommendations 245
Recommendation 6
e Residents’ Bill of Rights included in the Community Care and Assisted Living Act should be amended
to include clear language informing people in reasonable detail of their health care consent rights,
including a specic reference to the rights to:
• Give, refuse, or withdraw consent to any non-emergency medication and treatment, where
they have the capacity to consent to that decision;
• Receive the support of a supportive decision maker, if they choose to do so; and
• Have their substitute decision maker make a decision if they do not have capacity.
Recommendation 7
Reform of guardianship law should be explored in order to bring greater consistency to the statutory
duties of all substitute decision makers for health care in British Columbia, and greater compliance
with the general principles contained in the United Nations Convention on the Rights of Persons
with Disabilities.
Recommendation 8
e Community Care and Assisted Living Act (and associated provisions of the Residential Care
Regulation) should be amended to require that in non-emergency situations, agreement to the use of
any form of restraint must be obtained in the same manner as consent to health care under the Health
Care (Consent) and Care Facility (Admissions) Act. e provisions should include:
• A presumption of capacity;
• A requirement that the consent be informed;
• A hierarchy of substitute decision makers; and
• An independent decision maker as a last resort, such as the Public Guardian and Trustee.
e use of the term “representative” should be avoided unless used to reference a representative under
a representation agreement.
Recommendation 9
Section 75(3) of the Residential Care Regulation should be amended to:
246 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
• Require consent of either the adult, or their substitute decision maker, when emergency
use of a restraint continues for more than 24 hours; and
• Recognize the right of the adult, or the substitute decision maker, to revoke their consent
to the use of the restraint.
Recommendation 10
Section 73(3) of the Residential Care Regulation should be amended to require that the resident’s
substitute decision maker, if any, be informed of any emergency use of a restraint as soon as possible
after its use, including:
• e reasons for its use; and
• e duration of its use.
Recommendation 11
e restraint provisions of theResidential Care Regulationshould be amended to dene chemical
restraint as the administration of psychotropic medication to prevent harm to a resident or others
in situations where a resident has lost behavioural control, or where there is imminent risk of loss of
control in behaviour.
Recommendation 12
Section 85 of the Residential Care Regulation should be amended to include a requirement that long-
term care facilities have a detailed policy on the use of restraints, in both emergency and non-emer-
gency situations, which outlines:
• e consent process; and
• Requirements for advising substitute decision makers.
PRACTICE SUPPORT AND HEALTH CARE PROVIDER EDUCATION
Recommendation 13
e College of Physicians and Surgeons of British Columbia should disseminate to all members
materials aimed at supporting physicians to better understand their obligations with respect to health
care consent and substitute decision making processes, including the role of Public Guardian and
Trustee, which reect the Health Care (Consent) Care and Facility (Admission) Act, the Representation
Agreement Act, and other relevant provincial legislation.
Recommendation 14
e BC Ministry of Health’s Health Care Providers’ Guide to Consent to Health Care should be amended
in the following manner:
• Include discussion of the importance of using professional interpreters, and awareness
of hearing and speech issues, in determining capacity, and providing information
about treatment;
• Add information on supported decision making by way of a representation agreement;
Appendix A | List of Recommendations 247
• Clarify that consent to non-psychiatric treatment is still required under the Health Care
(Consent) and Care Facility (Admission) Act where a patient is involuntarily committed
under the Mental Health Act; and
• Provide expanded information on the role of the Public Guardian and Trustee with
respect to health care consent.
Recommendation 15
e General Practices Services Committee Divisions of Family Practice and the UBC Faculty of
Medicine Divisions of Geriatric Medicine and Geriatric Psychiatry should undertake educational
work aimed at supporting physicians to better understand their obligations with respect to health
care consent and substitute decision making processes, including the role of Public Guardian and
Trustee, which reects the Health Care (Consent) Care and Facility (Admission) Act, the Representation
Agreement Act, and other relevant provincial legislation.
Recommendation 16
e BC College of Nursing Professionals should publish, and widely disseminate to all registrants,
material on a nurse’s informed consent obligations, with a particular focus on the licensed practical
nurse and registered nurse’s role with respect to consent to health care treatment prescribed by physi-
cians in long-term care.
Recommendation 17
e British Columbia Ministry of Health and the Ministry of Advanced Education, Skills and
Training should review and amend the Health Care Assistant Core Competency Prole (March
2014) and the Health Care Assistant Provincial Curriculum (2015) to ensure that health care assis-
tants receive training on health care consent and substitute decision making, including clarication
of the role of health care assistants in facilitating the consent process as a member of an inter-disci-
plinary team.
Recommendation 18
Working with relevant partners, the Care Aide and Community Health Worker Registry should
develop an educational module for health care assistants on health care consent and substitute deci-
sion making processes, including the role of Public Guardian and Trustee, which reects the Health
Care (Consent) Care and Facility (Admission) Act, the Representation Agreement Act, and other relevant
provincial legislation. e Registry should make this course easily accessible to its registrants, promote
it widely, and consider methods of incentivizing registrants to undertake the course.
Recommendation 19
e BC Health Regulators should work with the appropriate regulatory colleges, the British Columbia
Ministry of Health, and key organizations such as Doctors of BC, to develop educational modules
on incapability assessment with respect to health care decision making and care facility admission.
Content should provide guidance on:
• How to engage the person being assessed in the assessment process?
248 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
• What is the appropriate involvement of supportive family and friends in the assessment
process, and what emphasis should be placed on their views when they dier from the
perception of the person living with dementia?
• What is the appropriate involvement of dierent health care professionals and various
members of the care team in the assessment process?
• How to appropriately document ndings?
• What is the impact of hearing, speech and language issues on incapability assessment?
• How can variables such as medication and time of day be reected in the process so
as to support the person living with dementia to present with as much capacity as is
possible for them?
• What avenues are available to a person who wishes to challenge a nding that the person
is incapable of making a health care treatment or care facility admission decision?
Recommendation 20
e College of Physicians and Surgeons of British Columbia should amend Bylaw 3-5(1)(b) to:
• Require that physicians’ clinical records include a clear record of the health care consent
process, including:
• who provided, or refused to provide, informed consent;
• how consent was provided; and
• when the informed consent was provided; and
• Clarify how to update the record when the physician is prescribing medication over the
telephone, or through another osite method.
e College should also educate members regarding changes to the bylaw.
Recommendation 21
e provincial health authorities should deliver training on dementia to all sta providing services or
care to older people (including nursing professionals, health care assistants, community health work-
ers, social workers, and physicians) with the goal of advancing knowledge, undermining myths, and
reducing stigma.
Recommendation 22
In order to better support the practice of all health care professionals and sta, a best practice guideline
should be developed which addresses how to:
• Engage people who are living with dementia in health care decision making; and
• Maximize the capacity of people living with dementia to participate in their health
care decisions.
Appendix A | List of Recommendations 249
Recommendation 23
e BC Ministry of Health should develop a province-wide policy on whether and under what
circumstances, if any, the use of involuntary commitment under the Mental Health Act is appropriate
for older people living with dementia.
Recommendation 24
e provincial health authorities, on behalf of the BC Ministry of Health, should develop a system to:
• Collect data regarding the use of the involuntary commitment and extended leave
provisions of the Mental Health Act;and
• Make its ndings publicly available through annual reporting of statistics.
e data collected should enable an analysis of how theMental Health Actis used with older people
living with dementia by tracking information on:
• e demographics of people detained, such as age, gender, and diagnoses; and
• WhatMental Health Actpowers are used, such as involuntary admission frequency and
duration, frequency and duration of extended leave, location of extended leave placements,
and recalls from extended leave.
Recommendation 25
e provincial health authorities should explore strategies to increase resources, such as social workers,
available to all employees, physicians, and contractors who work in long-term care, and home and
community care, to ensure they fully understand their obligations with respect to health care consent
and substitute decision making processes, including the role of Public Guardian and Trustee in a
manner which reects the Health Care (Consent) Care and Facility (Admission) Act, the Representation
Agreement Act, and other relevant provincial legislation.
SYSTEMIC BARRIERS AND STRUCTURAL CHANGE
Recommendation 26
e provincial health authorities should explore strategies for making social work services more avail-
able in order to better support older people living with dementia, their family members, and their
supportive and substitute decision makers with health care decision making.
Recommendation 27
e Doctors of BC and the Ministry of Health should collaborate to develop incentive payments to
encourage and support physicians to:
• Engage in robust conversations with patients living with dementia about health care
treatment decisions in order to ensure their consent is informed; and
• Undertake incapability assessments of patients living with dementia where capacity for a
specic health care decision is at issue.
250 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Recommendation 28
e First Nations Health Authority, Indigenous Health within the Ministry of Health, and Aboriginal
Health leads within each of the other health authorities should engage in discussions with Indigenous
communities in order to better understand and address barriers to informed consent to health care
experienced by Indigenous people in British Columbia.
Recommendation 29
e Ministry of Health should develop a plan to:
• Expand access to language interpretation for people living with dementia who reside
in aliated or contracted long-term care facilities, as well as their family members and
supportive and substitute decision makers; and
• Improve health care professional and sta awareness of language interpretation services.
ACCESS TO JUSTICE AND INFORMATION
Recommendation 30
e Government of British Columbia should implement an independent non-court review mecha-
nism to enable people to challenge:
• Findings of incapability to consent to health care treatment;
• Choice of temporary substitute decision makers;
• Care facility admission decisions; and
• Decisions made by substitute decision makers with respect to the person’s health care,
including the use of restraints.
e Provincial Government should engage in robust research and consultation to determine the most
appropriate and eective mechanism, and undertake education of health care professionals and sta,
and the general public, when the process is implemented.
Recommendation 31
e structure of legal aid should be amended to include funding for prompt legal advice and repre-
sentation regarding any legal action or proceeding that could remove or restore health care decision
making autonomy, including:
• Applications pursuant to s. 33.4 of the Health Care (Consent) and Care Facility (Admission)
Act, including capacity to consent to admission to a care facility;
• Challenges to applications for a committee of the person pursuant to the Patients
Property Act; and
• Involuntary committals, and reviews of involuntary committals, under the
Mental Health Act.
Appendix A | List of Recommendations 251
Recommendation 32
e Representation Agreement Act should be amended to provide that a person with mental capacity to
make a representation agreement with standard provisions under section 7 of the statute also has the
mental capacity to retain and instruct counsel for the purpose of advising on drafting the representa-
tion agreement.
Recommendation 33
Long-term care facilities should be required to provide written educational information on health care
consent rights and substitute and supportive decision making rights and responsibilities to both resi-
dents and their substitute or supportive decision makers at the time of admission, or shortly thereafter.
Such information should be provided in the language they prefer, or where that is not possible, read to
them through the use of a professional interpreter as soon as can be practically arranged.
Recommendation 34
e Government of BC should develop a comprehensive public education plan regarding supported
and substitute decision making for health care, including representation agreements, and also includ-
ing additional funding to non-prot agencies to further engage in this work.
252 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
APPENDIX B
Table of Key Informants
Stakeholder Title/Position/Credentials
Lawyers/ Advocates
Hugh S McLellan Barrister and Solicitor
Jaqua Page Barrister and Solicitor
Kevin R Smith Elder law lawyer, retired
Emily Clough Barrister & Solicitor, Clark Wilson LLP
Grace Balbutin Formerly Director, Seniors Abuse and Information Line, and Program Manager,
Community-Based Victim Services, Seniors First BC
Pharmacy
Ann Johnston M Pharm, RPh; Manager, Pharmacy Practice Support, BC Pharmacy Association
Glen Schoepp BCPhA; Community Pharmacist
Medicine/Psychiatry
Dr. Margaret J McGregor MD MHSc; Home ViVE Physician,Vancouver General Hospital STAT Centre; Clinical
Associate Professor & Director of Community Geriatrics,
Faculty of Medicine,Department of Family Practice, University of British Columbia
Dr. Joy Masuhara MD, CCFP; Physician at Vancouver Coastal Health Community Older Adult Mental
Health and Substance Use Services; member of Vancouver Division of Family
Practice, Residential and Frail Elder Care Committee; member of Seniors Task Force,
S.U.C.C.E.S.S.
Dr. Sue Turgeons MD, CCFP
Dr. Elisabeth Drance Geriatric Psychiatrist, Vancouver Coastal Health and Providence Health Care
Dr. Martha Donnelly
(deceased)
MD, Retired; Division Head, Geriatric Psychiatry (2002-2012), Community Geriatrics,
Department of Family Practice, (1987-2011), Director of the Subspecialty Residency
Program for Geriatric Psychiatry (2011 to 2016), UBC
Dr. A Maria Chung Clinical Associate Professor, Division of Geriatric Medicine, UBC Faculty of Medicine
Dr. Conrad Rusnak CCFP; Physician Home-Vive Program, Vancouver Coastal Health; Director, UBC
Enhanced Skills in Care of the Elderly
Dr. Michael Wilkins-Ho MD, FRCPC; (former) UBC Clinical Associate Professor
Head, Division of Geriatric Psychiatry (UBC); Director Geriatric Psychiatry (UBC);
Medical Manager, Older Adult Tertiary Program at Willow
Dr. Leena Jain Geriatrician, Fraser Health; Clinical Instructor, UBC
Dr. Carol Ward MD FRCPC; Geriatric Psychiatrist
Dr. Ritesh Parekh MBBS MPH FACP; Clinical instructor UBC, Internal and Geriatric medicine
Dr. Heidi Oetter Registrar & CEO, College of Physicians and Surgeons of British Columbia
Dr. Galt Wilson Senior Deputy Registrar, Complaints and Practice Investigations and Library
Services, College of Physicians and Surgeons of British Columbia
Appendix B | Table of Key Informants 253
Stakeholder Title/Position/Credentials
Dr. Karin Blouw MD CCFP FCFP; Year 3 RFP Course Co-Director, UBC Department of Family Practice;
Site Lead - Northwest , Northern Medical Program, University of Northern BC; Board
Chair, Pacic Northwest Division of Family Practice
Health Authorities
Leanne Lange Clinical Specialist, Adult Abuse & Neglect, Fraser Health
Melinda Allison MSW; Specialist, Adult Abuse & Neglect, Northern Health Regional Oce
Matt Scott Family & Social Support Practitioner, Three Bridges Community Health Centre,
Vancouver Coastal Health; previously Clinical Specialist for Vulnerable and
Incapable Adults, Vancouver Island Health Authority
Judy Nicol, RSW; Regional Practice Leader, Interior Health Authority
Gina Gasbard RN, MN, GNC (c); First Nations Health Authority, BC
Fancy C Poitras, Senior Policy Analyst, Strategic Policy, Policy, Planning & Quality, First Nations Health
Authority
Carmela Vezza Operations Director, Long Term Care, Island Health
Kirsten Thomson Regional Director, Risk & Compliance, Northern Health Authority
Chris Rauscher Community Consultant in Geriatric Medicine, Vancouver, BC
Elizabeth Pearce RN BSN; Home & Community Care Manager, First Nations Health Authority
Cari Borenko Homann, BA BSW RSW; Coordinator, Advance Care Planning, Fraser Health; Clinical Instructor,
Dept of Medicine, UBC
Directors of Care/ Res Care Admin/Medical Coordinators
Al Jina, BCom, LLB; President and Legal Counsel, Park Place Seniors Living
Lynda Foley RN, MN, GNC (c); Chief Nursing Ocer and VP Quality Assurance, Park Place Seniors
Living
Dr. Ralph Jones General Practice, Chilliwack; Board Member, Divisions of Family Practice
Joy Hall R.N.GNCC; Director of Care, Augustine House, Ladner, BC
Alzheimer’s Society
June Murray B.Soc.Sci, RN, GNC(C); Director, Programs & Services, Alzheimer Society of B.C.
Public Guardian and Trustee
Kimberley Azyan, Executive Director
Services to Adults, Public Guardian and Trustee
Goran Todorović, Manager, Assessment & Investigations Services and Health Care Decisions
Services to Adults, Public Guardian and Trustee
Grainne Sheridan Case Manager, Services to Adults, Public Guardian and Trustee
Nursing
Anita Dickson President, Licensed Practical Nurses Associationof BC
Jennifer Baumbusch RN, PhD; Associate Professor, School of Nursing, University of British Columbia
Lillian Hung RN, PhD; Clinical Nurse Specialist, Vancouver Coastal Health, Clinical Assistant
Professor, University of British Columbia
Lori Amdam RN, MSN; Education Consultant, Gerontology, Vancouver Island
Tansey Ramanzin Professional Conduct Review Consultant, Regulatory Compliance, British Columbia
College of Nursing Professionals
Adrienne Kehl RN, BScN; Regional Practice Lead – Home Health, Hospitals and Communities
Integrated Services, Interior Health Authority
254 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Stakeholder Title/Position/Credentials
Chris Armeanu Executive Councillor, Pensions and Seniors' Care, BC Nurses' Union
Marlene Goertzen LPN; Regional Co-Chair, Central Vancouver, BC Nurses’ Union BC
Social Work
Lynda Lougheed MSW; Vancouver Acute Social Work Practice Lead
Monica Tarnowsky Social worker, Vancouver Coastal Health
Chris Whyte RSW, MSW, MA; Social Work Site Leader – Residential, Providence Health Care,
Youville Residence
Tracie Janzen BSW; Social Worker, Northern Health
Ethicists
Jenny Young, Director, Ethics Services, Providence Health Care
Ministry of Health
Karen Archibald Karen Archibald, Director, Strategic Initiatives, Seniors Services Branch. Ministry of
Health
Sue Bedford Director, Community Care Facility Licensing and Director, Assisted Living Registry,
Ministry of Health
Alix Adams Alix Adams, Director, Palliative and Dementia Care, Seniors Services, Ministry of
Health
Scott Wingrove Manager, Strategic Policy, Seniors Services, Ministry of Health
Gerrit Van der Leer Director, Mental Health and Substance Use, Specialized Services Division, Ministry
of Health
Brian Westgate Director Strategic Priorities, Professional Regulation and Oversight, Ministry of
Health
Speech & Hearing
Mardi-Lowe Heistad Mardi Lowe-Heisted, RSLP, Certied by SAC; Director, Quality Assurance &
Professional Practice, College of Speech & Hearing Health Professionals of BC
Other
Leanne Dospital Advocate for Service Quality
Jennifer Lyle Chief Executive Ocer, SafeCare BC
Gerritt W Clements Barrister and Solicitor; Health Law and Ethics Educator and Consultant; Adjunct
Professor, Schools of Nursing (University of Victoria and
University of Northern British Columbia)
Lara Williams MA; Consultant, Education Assessment, BC Care Aide & Community Health Worker
Registry
Caregiver Organizations
Barb MacLean Executive Director, Family Caregivers of British Columbia
Appendix C | Key Informant Questions 255
APPENDIX C
Key Informant Questions
1. Please summarize your professional experience in relation to:
a) health care consent for older people, including adults with and without capacity to
make their own decisions’; and
b) consent to, and use of, restraints for older people living in long-term care, acute care,
and extended care settings, particularly in terms of use of anti-psychotics.
2. What kinds of health care settings do you work with older people living with dementia? (eg
acute hospital, long-term care, home and community care, mental health).
3. What regulations, policies or guidelines with respect to consent issues in health care and
restraint, government or otherwise, do you regularly come across or use in your work?
4. Are the regulations in the Health Care (Consent and Care Facility (Admission) Act or the
Residential Care Regulations frequently cited, referred to, and used to guide your work, respond
to cases, and educate and train sta? What other regulations do you apply if your work in
relation to health care consent or use of restraints?
5. Is your work guided more by the individual policies or guidelines of care facilities on issues of
consent and restraint? If so, which policies do you work with?
6. In your professional experience, what are the main issues that arise on a regular basis with
respect to older patients or residents and consent to health care? (Canvas topics such as
substitute decision making processes, disagreement resolution, complaint processes, end of life
care, role of the health professional, role of the public guardian, as well as issues of consent to
admission to care facilities.)
7. Are decision making processes in the event of an adult’s incapacity generally well known and
clear to facility sta, health care sta, government service departments, advocacy organizations
and family members of the older person? What, if any, are some common misconceptions or
areas of confusion or vagueness?
8. In your professional experience, what are the main issues that arise on a regular basis with
respect to older adults and practices surrounding the use of restraints, in particular chemical
restraints and anti-psychotic medications.
a. Are sta and health care providers clear on what constitutes restraint, consent
requirements for uses of restraint, restraint regulations? Are antipsychotic medications
which are used to manage behaviour considered by sta to be the use of a restraint?
256 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
b. Are policies and regulations consistent and applied consistently across settings? (for
instance, between dierent long-term care providers and extended care settings,
between acute care hospital and long-term care settings.)
9. Do you feel that the areas of consent to health care and chemical restraint of older adults is
suciently regulated? For instance, is your work and that of organizations and people you work
with adequately guided by regulation and/or policies? Is this regulation consistent? Are their
areas of confusion or common misconception?
10. Can you identify any noteworthy discrepancies that exist between practice in long-term care
facilities with respect to health care consent and use of restraint, and the legal regulation
of this area?
11. Possible other areas to discuss depending on expertise:
a. Likely impact of the new provisions of Health Care (Consent) and Care Facility
(Admissions) Act regarding admission to a care facility expected to come into force on
issues discussed above;
b. Intersection of Mental Health Act and long-term care admission;
c. Any barriers to consent which you have noticed which are specic to particular groups,
such as particular ethno-cultural communities, Indigenous communities, women/men,
geographic location (eg. rural or remote) etc.
d. Levels of training and education of sta and health care providers who work at long-
term care and other settings on health care consent law and policies.
12. Other issues identied by the key informant.
Page 1 of 9
The Canadian Centre for Elder Law, in collaboration with the Alzheimer Society of British Columbia,
is examining the law, policy and practice of consent to health care in the context of aging and
dementia. This 16-month project funded by the Law Foundation of British Columbia involves
extensive comparative legal research on informed consent and interrelated areas of the law, as well
as community and k
ey stakeholder consultation. The work is informed by an expert
interdisciplinary advisory committee and will culminate in a report identifying areas for law and
practice reform and at least one plain language educational resource on health care consent rights.
This year we have been holding focus groups with people living with dementia and their family
caregivers to learn more about your experiences w
ith health care consent. As a final step in
consultation we are conducting this online survey of family caregivers of people living with
dementia who make health care decisions or assist with health care decisions for the person living
with dementia.
More on this project: https://www.bcli.org/project/health-care-consent-aging-and-dementia-mapping-
law-and-practice-in-british-columbia
1.
1. Do you, or did you in the past, make health care decisions for a person living with dementia, or assist
them with health care decisions?
BC law defines health care as anything that is done for a therapeutic, preventive, palliative, diagnostic,
cosmetic or other purpose related to health. Health care decisions include decisions about medication and
treatment, including participation in drug trials
, testing and surgery.
Yes
No
2. Does/did the person living with dementia live in British Columbia?
Yes
No
Appendix D | Survey of Family Caregivers 257
APPENDIX D
Survey of Family Caregivers
3. Please complete the following statement. The person for whom I made or make health care decisions is
my...
Mother
Father
Mother-in-law
Father-in-law
Adult child
Under-age child
Spouse / husband/ wife/ life partner
Boyfriend / girlfriend
Grandmother
Grandfather
Sibling
Friend
Prefer not to answer
Other (please specify)
4. For how many years have you been making or assisting with health care decisions for the person living
with dementia?
If the person living with dementia has passed away, please select the option that corresponds to the total
number of years of assisting with, or making, health care decisions for the person living with dementia.
less than 1 year
1-5 years
more than 5 years but less than 10 years
more than 10 years
Page 2 of 9
258 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
5. Where does the person living with dementia currently live? Please check all that apply
Person lives with me
Person lives alone
Person lives with someone other than me
Person resides in assisted living
Person resides in residential care
Person is in hospital
Person is in respite care
Person has passed away
Page 3 of 9
Appendix D | Survey of Family Caregivers 259
2.
Other (please specify)
6. If you are or were a health care decision maker, where do/did you get your authority?
I am a court-ordered guardian or committee of the person
I am a substitute decision maker under a representation agreement
I am a supportive decision maker under a representation agreement. (You have the legal authority to assist with decisions but not
the authority to make decisions for the person)
There is a no l
egal document. I am recognized by health care providers as a next of kin (also called a temporary substitute
decision maker)
I don't know
7. If you are or were a health care decision maker for the person living with dementia, were you ever
provided with any information about your rights and responsibilities as a health care decision maker?
Yes
No
8. If you answered yes to the above question, who provided information about your rights and
responsibilities? Please select all that apply.
Lawyer
Notary public
Hospital social worker
Community organization, such as the Alzheimer Society of BC
Physician
Nurse
Family member or friend
Internet source
Other (please specify)
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260 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
9. Which statement best describes how you approach making or assisting with health care decisions?
I make decisions for the person living with dementia
I help the person living with dementia make decisions
We make decisions together
I am there for support—I do not make health care decisions
Other (please specify)
10. What kinds of assistance do or did you provide? Please check all that apply
I help the person understand information
I ask questions about risks, benefits, alternatives and other issues we need to understand
I take notes
I help the person remember what was discussed
I accompany the person for emotional support
I book medical appointments
I make sure the person remembers to attend the appointments
Othe
r (please specify)
11. Do you (or did you) attend medical appointments with the person living with dementia?
Yes
No
12. What statement best describes the interaction with the doctor during medical appointments with the
person living with dementia?
Doctor speaks/spoke to the person living with dementia
Doctor speaks/spoke to me
Doctor speaks/spoke to both of us
Doctor meets/met with us separately
Other (please specify)
Page 5 of 9
Appendix D | Survey of Family Caregivers 261
Other (please specify)
13. Does the health care provider speak to you about medication and treatment risks, side effects, benefits
and alternatives to help you make informed decisions?
Yes
No
14. Which health care or other professionals provide you with the information that assists you and/or the
person with dementia with decision making about medication and treatment (if anyone)? Please check all
that apply
Family physician
Geriatric psychiatrist
Nurse
Nurse practitioner
Pharmacist
Social worker
No one. I have to do research on my own
Other (please specify)
15. Did you and the person with dementia ever disagree about medication or treatment while the person
still had/has mental capacity? Mental capacity refers to the ability to understand and evaluate relevant
information, and appreciate the consequences of a decision.
Yes
No
I'm not sure
16. If you answered yes to the above question, what happened in those instances? Who decided about
medication and treatment?
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262 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
17. Do you, or did you, and the person living with dementia ever disagree about medication or treatment
after the person no longer had capacity to make the health care decisions involved?
Yes
No
I'm not sure
18. If you answered yes to the above question, what happened in those instances?
19. Were you, or are you, the only person assisting with or making health care decisions for the person
living with dementia?
Yes
No
20. If you answered yes to the above question, please identify the other categories of people involved in
health care decision making. For example, spouse, child or children, sibling, friends.
21. Please comment on how decision making responsibilities are/were shared.
22. Have you or do you experience challenges working together to support the person living with dementia
with health care decisions, or with making decisions for the person?
Yes
No
I'm not sure
23. If you answered yes to the above question, please describe the challenges and how you worked
through them.
Page 7 of 9
Appendix D | Survey of Family Caregivers 263
3.
24. If the person lived, or is living, in residential care, which statement best describes your experiences with
medication in the residential care facility?
The care facility discusses all medication changes with me and gets my consent first
The care facility notifies me of medication changes before they occur
The care facility notifies me of medication changes immediately or shortly after they occur
Staff notify me of medication changes at scheduled care conferences
I find out about medication changes when I see the bill
I have no experience with care facilities
Other (please specify)
25. Do you believe you have accurate and up to date knowledge about what medication the person living
with dementia is currently taking?
Yes
No
I'm not sure
I am no longer caring for the person living with dementia
Other (please specify)
26. Do you feel that you are supported to participate in health care decision making for the person living
with dementia?
Yes
No
Other (please specify)
27. Please describe any concerns you have about decision making regarding medication and treatment for
people living with dementia
Page 8 of 9
264 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
28. Can you identify anything that would have made it easier for you to participate in medication and
treatment decisions for the person living with dementia?
29. How do/did you engage the person living with dementia in health care decision making, especially once
communication abilities and capacity to understand information become limited?
30. The law requires health care decision makers to make decisions consistent with a person's wishes,
beliefs and values, or in the person's best interests if beliefs and values are not known. As a health care
decision maker for a person living with dementia, how do you ensure you are making decisions in a
manner that is consistent with these responsibilities?
31. Is there anything else you would like to tell us about your experiences with health care decision
making?
Page 9 of 9
Appendix D | Survey of Family Caregivers 265
266 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
1 Adapted from British Columbia, Ministry of Health,
“Best Practice Guideline for Accommodating and Managing
Behavioural and Psychological Symptoms of Dementia in
Residential Care” (2012), online (pdf ): Ministry of Health,
<www2.gov.bc.ca/gov/content/family-social-supports/seniors/
about-seniorsbc/seniors-action-plan/what-we-ve-done/
dementia-guidelines> [BPSD Guideline].
2 Ibid.
3 MaryLou Harrigan, “Older Adult Abuse and Dementia:
A Literature Review” (2010) at 8, online (pdf ): Alzheimer Society
of Canada <alzheimer.ca/en/Home/Living-with-dementia/
Day-to-day-living/Safety/Elder-abuse>.
4 “Best, Promising and Emerging Practices” (last visited 8
December 2018), online: Homeless Hub <www.homelesshub.
ca/solutions/best-promising-and-emerging-practices>.
5 Ibid.
6 Adapted from BPSD Guideline, supra note 1.
7 Adapted from Dr. Sabina Brennan, “What is
Dementia” (last updated 24 August 2018), online: Alzheimer
Society of Canada <alzheimer.ca/en/Home/About-dementia/
What-is-dementia>.
8 “Geriatric Medicine Prole” (last modied March
2018), online (pdf ): Canadian Medical Association <www.cma.
ca/sites/default/les/2019-01/geriatric-e.pdf> [Geriatric
Medicine Prole].
9 Dr. Cathy Shea & Dr. Melissa Andrew, “Denition of
a Geriatric Psychiatrist” (last visited 8 August 2018), online:
Canadian Academy of Geriatric Psychiatry <www.cagp.ca/
page-1257712>.
10 BC Care Aide Registry & Community Health Worker
Registry (last visited 8 August 2018), online: <www.cachwr.
bc.ca/Home.aspx> [BC Care Aide & Community Health
Worker Registry].
11 Health Care (Consent) and Care Facility (Admission) Act,
RSBC 1996, c 181, s 1 [HCCA].
12 “Guidelines for Care: Person-centred care of
people with dementia living in care homes” (2011),
online (pdf): Alzheimer Society of Canada <alzheimer.ca/
en/Home/We-can-help/Resources/For-health-care-
professionals/culture-change-towards-person-centred-care/
guidelines-for-care>.
13 Joseph C Segen, McGraw-Hill Concise Dictionary of
Modern Medicine (New York, McGraw-Hill Companies Inc,
2002) sub verbo “psychotropic drug”.
14 Residential Care Regulation, BC Reg 96/2009, s
1 [RC Reg].
15 Although the Representation Agreement Act does not use
the expression “supported decision making” but instead refers
to authority “to help the adult make decisions”, this language
was incorporated into the Act as a result of advocacy by families
who make use of supported decision making. e reference is
widely understood, both locally and internationally, to have
codied supported decision making in BC.
16 See denition at supra note 13.
17 British Columbia, Oce of the Senior Advocate, “Every
Voice Counts: Oce of the Seniors Advocate Residential Care
Survey” (2017) at 11, online (pdf ): Oce of the Seniors Advocate
British Columbia <www.seniorsadvocatebc.ca/osa-reports/
residential-care-survey/> [Every Voice Counts].
18 Canada, Ministry of Health, National Dementia
Conference: Building and Informing a National Dementia Strategy
for Canada (Ottawa: Public Health Agency of Canada, August
2018) at 11, online (pdf ) <www.canada.ca/content/dam/phac-
aspc/documents/services/publications/diseases-conditions/
national-dementia-conference-report/national-dementia-
conference-report-eng.PDF>.
19 World Health Organization and Alzheimer’s Disease
International, “Dementia: A Public Health Priority” (2012)
at 8, online (pdf ): World Health Organization <www.who.int/
mental_health/publications/dementia_report_2012/en/>.
20 British Columbia, Ministry of Health, “e Provincial
Dementia Action Plan for British Columbia: Priorities and
Actions for Health System and Service Redesign” (2012) at 5,
online (pdf): Ministry of Health <www.health.gov.bc.ca/library/
publications/year/2012/dementia-action-plan.pdf> [Provincial
Dementia Action Plan].
21 Alzheimer Society of Canada, “Rising Tide: e
Impact of Dementia on Canadian Society” (2010) at 16, online
(pdf): Alzheimer Society of Canada <alzheimer.ca/en/suroit/
Get-involved/Advocacy/Latest-info-stats/Rising-Tide>. e
increasing prevalence is attributed to greater life expectancy.
22 Canada, Senate Standing Committee on Social Aairs,
Science and Technology, Dementia in Canada: A National
Strategy for Dementia-friendly Communities (November 2016)
(Chair: Honourable Kelvin Kenneth Ogilvie) at 3. [Dementia
in Canada] based on the following research: “Health Care
in Canada, 2011: Focus on Seniors Aging” (2011), online
(pdf): Canadian Institute for Health Information <publications.
gc.ca/site/eng/9.827532/publication.html>; “National
Dementia Research and Prevention Plan” (2014), online (pdf ):
Government of Canada <www.canada.ca/content/dam/canada/
health-canada/migration/healthy-canadians/alt/pdf/diseases-
conditions-maladies-aections/disease-maladie/dementia-
demence/dementia-demence-plan-eng.pdf.>.
23 Statistics Canada, Age and sex, and type of dwelling data:
Key results from the 2016 Census (3 May 2017), online: e Daily
<www.statcan.gc.ca/daily-quotidien/170503/dq170503a-eng.
htm>. In 2016, 16.9% of Canadians were age 65 or older.
24 Ibid.
25 Statistics Canada, A portrait of the population aged 85
and older in 2016 in Canada, Catalogue No 98-200-X (Ottawa:
Statistics Canada, 3 May 2017).
26 Provincial Dementia Action Plan, supra note 20.
27 Medical Service Economic Analysis, Health System
Planning Division, Ministry of Health, Dementia (age 45+
years only) January 17, 2011, project 2010_372. Centre for
Applied Research in Mental Health and Addictions, Simon
Fraser University, 2006. ), cited in Provincial Dementia
Action Plan, cited in Provincial Dementia Action Plan, supra
note 20 at 5.
28 British Columbia, Ministry of Health, “Provincial
Guide to Dementia Care in British Columbia: Achievements
and Next Steps” (2016) at 10, online (pdf ): Ministry of Health
<www.health.gov.bc.ca/library/publications/year/2016/
Endnotes
Endnotes 267
bc-dementia-care-guide.pdf> [Provincial Guide to Dementia];
Population Health Surveillance and Epidemiology, Ministry
of Health, Dementia (age 40+ years), data extracted
December 2015.
29 British Columbia, Ministry of Health, “A Review of the
Use of Anti-psychotic Drugs in BC Residential Care” (2011),
at 7, online (pdf ): Ministry of Health <www.health.gov.bc.ca/
library/publications/year/2011/use-of-antipsychotic-drugs.
pdf> [A Review of the Use of Anti-psychotic Drugs].
30 BPSD Guideline, supra note 1 at 9.
31 Ibid at 14.
32 Learning and Development Model (Physical,
Intellectual, Emotional, Capabilities, Environment and
Social), which “provides a practical framework for assessment
and supportive care strategies using a comprehensive person-
directed approach that is enabled by inter-professional
communication and collaboration”: See “P.I.E.C.E.S. Learning
and Development Model” (last visited 19 August 2018), online:
<pieceslearning.com/> [P.I.E.C.ES.].
33 Based on data from 2011, (the 2010/2011 Canadian
Community Health Survey, the 2011/2012 Survey of
Neurological Conditions in Institutions in Canada, and the
2011 Survey on Living with Neurological Conditions in
Canada), Suzy L. Wong, Heather Gilmour and Pamela L.
Ramage-Morin characterize the national prevalence in long-
term care at 12% of people between the ages of 45 to 64, 42% of
people between the ages of 65 to 79, and 56% of people 80 years
old, or older. Overall an estimate of 45% of people over 45 and
older living in long-term care have a diagnosis of dementia. See
Wong, Suzy & Gilmour, Heather & Ramage-Morin, Pamela.
(2016). Alzheimer’s disease and other dementias in Canada.
Health reports / Statistics Canada, Canadian Centre for
Health Information Rapports sur la sante / Statistique Canada,
Centre canadien d’information sur la sante. 27. 11-16, at 11,
online: <www150.statcan.gc.ca/n1/pub/82-003-x/2016005/
article/14613-eng.htm>
34 “Every Voice Counts”, supra note 17 at 11.
35 CIHI collects intake assessment data for long-term
care facilities across the country using the InterRAI Resident
Assessment Instrument.
36 British Columbia, Oce of the Seniors Advocate,
“Placement, Drugs and erapy: We Can Do Better” (2015) at
7, online (pdf ): Oce of the Seniors Advocate British Columbia
<www.seniorsadvocatebc.ca/osa-reports/placement-drugs-and-
therapy-we-can-do-better/> [Placement, Drugs and erapy].
37 Ibid at 8.
38 Ibid.
39 A Review of the Use of Anti-psychotic Drugs,
supra note 29.
40 “Dementia in Long Term Care” (last visited
8 August 2018), online: Canadian Institute for
Health Information <www.cihi.ca/en/dementia-
in-canada/dementia-across-the-health-system/
dementia-in-long-term-care>.
41 BPSD Guideline, supra note 1 at 6.
42 Jennifer Tjia, Jerry H. Gurwitz & Becky A. Briesacher
“e Challenge of Changing Nursing Home Prescribing
Culture” (2012)10:1 e American Journal of Geriatric
Pharmacotherapy37.
43 BPSD Guideline, supra note 1.
44 BC Care Providers Association, “Best Practices Guide
for Reducing Anti-Psychotic Drug Use in Residential Care:
Ensuring Residential Care Homes are Safe Places to Live
and Work” (2013), online (pdf): BC Care Providers Association
<bccare.ca/2013/06/backgrounder-best-practices-guide-for-
safely-reducing-anti-psychotic-drug-use-in-residential-care/>.
45 BC Care Providers Association, “A Pathway to Ensuring
the Appropriate Use of Antipsychotics in Continuing Care”
(2018), online (pdf ): BC Care Providers Association <bccare.
ca/2018/04/new-bccpa-guide-shows-success-of-care-homes-
push-to-cut-antipsychotics-use/>.
46 BC Patient Safety and Quality Council and Reichert
and Associates, “Clear Wave 2 Final Evaluation Report” (2017),
online (pdf): BC Patient Safety and Quality Council <bcpsqc.ca/
resource/clear-wave-2-nal-evaluation-report/>.
47 Elizabeth A. Carter, “O-label Anti-psychotic use
in Older Adults with Dementia: Not just a Nursing Home
Problem” (2018), online (pdf): AARP <www.aarp.org/content/
dam/aarp/ppi/2018/04/o-label-antipsychotic-use-in-older-
adults-with-dementia.PDF>.
48 Shared Care, Polypharmacy Risk Reduction, online:
<www.sharedcarebc.ca/our-work/> polypharmacy, and Keith J.
White MD and Chris Rauscher MD, “Tackling Polypharmacy
in BC: the Shared Care Approach”, BCMJ, 56:10 (December
2014) at 516-517, online: BC Medical Journal <bcmj.org/
shared-care/tackling-polypharmacy-bc-shared-care-approach>
[White and Rauscher].
49 White and Rauscher, supra note 48.
50 Deborah O’Connor, Jim Mann & Elaine Wiersma,
“Stigma, discrimination and agency: diagnostic disclosure as an
everyday practice shaping social citizenship” (2018) 44 Journal
of Aging Studies 45 at 45-46.
51 “Revera Report on Ageism: Independence and Choice
as we Age” (2016) at 5, online (pdf ): Age is More <www.
ageismore.com/getattachment/Research/Revera-Report-on-
Ageism-Independence-and-Choice-A/Independence_and_
Choice_Report_2016.pdf.aspx >.
52 Canadian Charter of Rights and Freedoms, Part 1 of the
Constitution Act, 1982, being Schedule B to the Canada Act
1982 (UK), 1982, c11 [the Charter].
53 HCCA, supra note 11.
54 Fleming v Reid, 1991 CanLII 2728 (ON CA) at para
33 [Fleming].
55 Revera and the International Federation on Aging,
Mental Health Act, RSBC 1996, c 288 [MHA].
56 Starson v Swayze, 2003 SCC 32 at para 77.
57 Ibid at para 75.
58 Convention on the Rights of Persons with Disabilities,
13 December 2006, 2515 UNTS 3 art 3 (entered into force 3
May 2008) [CRPD].
59 Community Legal Assistance Society, “Operating in
Darkness: BC’s Mental Health Act Detention System” (2017)
at 85, online (pdf ): Community Legal Assistance Society <www.
clasbc.net/operating_in_darkness_bc_s_mental_health_act_
detention_system> [Operating in Darkness].
60 Mary Louise MacLaren, D.C, and Council of Canadians
with Disabilities v Attorney General of British Columbia, amended
notice of claim (December 11, 2017), online: Community
Legal Assistance Society <www. clasbc.net/current_cases>.
Toward the end of the Health Care Consent project the British
Columbia Supreme Court released a decision ruling that the
Council of Canadians with Disabilities (the CCD) did not have
public interest standing to bring the action, and dismissed the
268 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
claim: MacLaren v British Columbia (Attorney General), 2018
BCSC 1753. e CCD is appealing this decision.
61 Bill 26, Health Statutes Amendment Act, 3
rd
Sess, 38
th
Parl,
British Columbia, 2007 (assented to 10 May 2007), RSBC
1996, c 181 [Health Statutes Amendment Act].
62 Bill 51, Health Care (Consent) and Care Facility
(Admission) Act, 2
nd
Sess, 35th Parl, British Columbia, 1993.
63 Supplements Repeal Act, S.B.C. 2006, c. 33, s 13.
64 Health Statutes Amendment Act, supra note 61.
65 CRPD, supra note 58.
66 N denotes the number of participants who
attended the event.
67 is distinction is discussed in: Ruth Bartlett &
Deborah O’Connor, “From personhood to citizenship;
Broadening the lens for dementia practice and research” (2007)
21:2 Journal of Aging Studies 107.
68 Human Rights Code, RSBC 1996, c 210, s 8.
69 “Practice Standards and Guidelines on Access to
Medical Care” (2012), online (pdf): BC College of Physicians and
Surgeons <www.cpsbc.ca/for-physicians/standards-guidelines>;
“CMA Code of Ethics” (last reviewed March 2018) at para 17,
online (pdf): Canadian Medical Association <www.cma.ca/En/
Pages/code-of-ethics.aspx> [CMA Code of Ethics].
70 Eldridge v. British Columbia (Attorney General), [1997]
3 SCR 624, 151 DLR (4th) 577; C. Adele Kent,Medical
Ethics: e State of the Law(Ontario: LexisNexis Butterworths,
2005) at 63.
71 Martha Jackman, “e Application of the Canadian
Charter in the Health Care Context” (2000) 9:2 Health L Rev
22 at 23-24.
72 Human Rights Code, RSO 1990, c H 19, s 10.
73 Law Commission of Ontario, A Framework for the Law
as It Aects Persons with Disabilities, Final Report (2012) at 20
[Framework for the Law as It Aects Persons with Disabilities].
74 Quebec (Commission des droits de la personne et des droits de
la jeunesse) v. Montréal (City), 2000 SCC 27 at paras 77-81.
75 Framework for the Law as It Aects Persons with
Disabilities, supra note 73 at 19.
76 CRPD, supra note 58.
77 “e Human Rights of People Living with Dementia:
from Rhetoric to Reality” (2016), online (pdf): Dementia
Alliance International <www.dementiaallianceinternational.org/
media-release-may-2016/>.
78 American Psychiatric Association, Diagnostic and
Statistical Manual of Mental Disorders, 5th ed (Arlington, VA:
American Psychiatric Association 2013) [DSM-5].
79 Neil Crowther, “Harnessing the United Nations
Convention on the Rights of Persons with Disabilities to
Improve the Lives of Persons with Dementia” (2016), online
(pdf): Alzheimer’s Disease International <www.alz.co.uk/
dementia-reports-policy-briefs>.
80 BC Human Rights Tribunal v Schrenk, 2017 SCC 62.
81 Peter Mittler, Speech given to United Nations
Committee On e Rights Of Persons With Disabilities, 16th
Session: Side Event: August 25th 2016: <www.alz.co.uk/sites/
default/les/pdfs/Peter-Mittler-UN-CRPD-Aug-2016.pdf>.
82 Adult Guardianship Act, RSBC 1996, c 6, s. 2.
83 CRPD, supra note 58, art 3.e Convention was adopted
by the General Assembly on 13 December 2006, became open
for signature on March 30, 2007, and was ratied by Canada
on March 11, 2010. See United Nations Division for Society
Policy and Development, Treaty Collection, online: <treaties.
un.org/Pages/ViewDetails.aspx?src=TREATY&mtdsg_
no=IV-15&chapter=4&clang=_en>. e CPRD does not
create any new rights, but rather consolidates existing human
rights as they apply to people with disabilities, including as it
does many rights set out in earlier international and regional
human rights instruments. For example, the International
Covenant on Civil and Political Rights (“ICCPR”) and its
counter-part, the International Covenant on Economic,
Social and Cultural Rights “(ICESCR”), the European
Convention on Human Rights (“ECHR”) and the European
Social Charter (“ESC”), the African Charter on Human and
People’s Rights (“ACHPR”) and the American Charter of
Human Rights (“AmCHR”). e rights are also set out in many
themed instruments, such as the International Convention
on the Elimination of All Forms of Racial Discrimination
(“ICERD”), the Convention on the Elimination of All
Forms of Discrimination Against Women (“CERD”), the
Convention Against Torture (“CAT”), European Charter on
the Prevention of Torture (“ECPT”), European Convention
on Human Rights and Biomedicine (“ECHRB”), Council of
Europe Framework Convention for the Protection of National
Minorities (“FCNM”).
84 CRPD, supra note 58, art 3. e remaining general
principles are: (d) Respect for dierence and acceptance
of persons with disabilities as part of human diversity and
humanity; (e) Equality of opportunity; (f) Accessibility ;(g)
Equality between men and women; (h) Respect for the evolving
capacities of children with disabilities and respect for the right
of children with disabilities to preserve their identities.
85 Ibid, art 4.
86 e CRPD contains, for example, articles which address:
accessibility of buildings and facilities (art 9); natural disasters
and other emergencies that threaten the safety of people with
disabilities (art 11); the right to legal capacity (art 12); respect
for privacy (art 22); and the right to informed consent to health
care (art 25).
87 Kari Lislerud Smebye, Marit Kirkevold & Knut
Engedal, “How do persons with dementia participate in
decision making related to health and daily care? A multi-case
study” (2012) 12:1 MC Health Services Research 1.
88 “What is a dementia-friendly community?”
(last modied 10 July 2015), online: Alzheimer Society
British Columbia <alzheimer.ca/en/bc/About-dementia/
Dementia-friendly%20communities/What%20is%20a%20
dementia-friendly%20community>.
89 Government of Canada, Convention on the Rights of
Persons with Disabilities: First Report of Canada, Catalogue no
CH37-4/19-2013E-PDF (Ottawa: Canadian Heritage, 2014),
para 14, online: <www.ccdonline.ca/en/international/un>.
90 “lived experience” in Oxford Reference,
online: <www.oxfordreference.com/view/10.1093/oi/
authority.20110803100109997>.
91 “Originating from the Latin word demens, meaning
“without a mind,” the term dementia historically designated
social and intellectual deterioration associated with old
age”: Andre P Smith, “Dementia” in Vincent N Parrillo, ed,
Encyclopedia of Social Problems (ousand Oaks, CA: SAGE,
2008) at 217.
92 “e ICD-10 Classication of Mental and Behavioural
Disorders: Clinical descriptions and diagnostic guidelines”
(1992) at 45, online (pdf ): World Health Organization <apps.
who.int/iris/handle/10665/37958>.
Endnotes 269
93 Dementia in Canada, supra note 22 at 3.
94 “Dementia” (last modied 13 July 2018), online:
Government of Canada <www.canada.ca/en/public-health/
services/diseases/dementia.html>.
95 DSM-5, supra note 78.
96 “Stages & progression” (last visited 30 August 2018),
online: Alzheimer Society of Ireland <www.alzheimer.ie/About-
Dementia/Stages-progression.aspx>.
97 “e progression of Alzheimer disease and other
dementias” (last visited 8 August 2018), online: Alzheimer’s
Society United Kingdom <www.alzheimers.org.uk/info/20073/
how_dementia_progresses/1048/the_progression_of_
alzheimers_disease_and_other_dementias/2> [Progression of
Alzheimer disease and other dementias].
98 “People with Dementia have Shortened Life
Expectancies” (last visited 8 August 2018), online: Fisher Center
for Alzheimer’s Research Foundation <www.alzinfo.org/articles/
people-with-dementia-have-shortened-life-expectancies>.
99 Ramon Mocellin, Amy Scholes & Dennis
Velakoulis, “Dementia Quality Care: Understanding
Younger Onset Dementia” (last modied June 2013) at 5,
online (pdf): Dementia Australia <www.dementia.org.au/
les/20130808_QDC4.pdf>.
100 World Health Organization and Alzheimer’s Disease
International, “Dementia: A Public Health Priority” (2012)
online (pdf): World Health Organization <www.who.int/
mental_health/publications/dementia_report_2012/en/>.
101 “What is Dementia?” (last visited 27 August 2018),
online: Alzheimer’s Association <www.alz.org/alzheimers-
dementia/what-is-dementia> [What is Dementia]; Christina
Ianzito, “8 Treatable Conditions at Can Be Mistaken for
Alzheimer’s Disease” (last visited 27 August 2018), online:
AARP <www.aarp.org/caregiving/health/info-2017/conditions-
mistaken-for-alzheimers-disease.html>.
102 “Normal aging versus dementia” (last modied 11
August 2017), online: Alzheimer Society of Canada <alzheimer.
ca/en/Home/About-dementia/What-is-dementia/
Normal-aging-vs-dementia>.
103 Ibid.
104 Dementia in Canada, supra note 22.
105 Neuropathology Group of the Medical Research
Council Cognitive Function and Ageing Study (MRC
CFAS),“Pathological correlates of late-onset dementia in a
multicentre, community-based population in England and
Wales” (2001) 357:9251 e Lancet 169.
106 British Columbia, Ministry of Health, “Cognitive
Impairment: Recognition, Diagnosis and Management in
Primary Care” (last modied 22 June 2016), at 1, online (pdf):
Ministry of Health <www2.gov.bc.ca/gov/content/health/
practitioner-professional-resources/bc-guidelines/cognitive-
impairment> [Cognitive Impairment Guidelines].
107 “What is Alzheimer’s?” (last visited 8 August 2018),
online: Alzheimer’s Association <www.alz.org/alzheimers-
dementia/what-is-alzheimers> [What is Alzheimer’s].
108 Ibid.
109 “Stages of Alzheimer’s” (last visited 8 August 2018),
online: Alzheimer’s Association <www.alz.org/alzheimers-
dementia/stages> [Stages of Alzheimer’s].
110 “Alzheimer’s Stages: How the disease progresses” (17
May 2018), online: Mayo Clinic <www.mayoclinic.org/diseases-
conditions/alzheimers-disease/in-depth/alzheimers-stages/
art-20048448?pg=2>.
111 Stages of Alzheimer’s, supra note 109.
112 Ibid.
113 Ibid.
114 What is Alzheimer’s, supra note 107.
115 Ibid.
116 Dementia in Canada, supra note 22 at 4.
117 Lauren Reed-Guy, “e Stages of Dementia” (last
reviewed 27 July 2016 by Timothy J Legg), online: Health Line
<www.healthline.com/health/dementia/stages>.
118 “Vascular Dementia” (9 May 2018), online: Mayo Clinic
<www.mayoclinic.org/diseases-conditions/vascular-dementia/
symptoms-causes/syc-20378793>.
119 “Vascular Dementia” (last visited 8 August 2018), online:
Alzheimer’s Association <www.alz.org/alzheimers-dementia/
what-is-dementia/types-of-dementia/vascular-dementia>
[Vascular Dementia].
120 “Aphasia” (last visited 8 August 2018), online: National
Stroke Association <www.stroke.org/we-can-help/survivors/
stroke-recovery/post-stroke-conditions/physical/aphasia>.
121 Vascular Dementia, supra note 119.
122 “Vascular dementia: what is it, and what causes
it?” (last visited 8 August 2018), online: Alzheimer’s Society
United Kingdom <www.alzheimers.org.uk/info/20007/
types_of_dementia/5/vascular_dementia/2>.
123 “e progress of vascular dementia” (last visited 28
August 2018), online: Alzheimer’s Society United Kingdom <www.
alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/
how-dementia-progresses/progression-vascular-dementia>.
124 Dementia in Canada, supra note 22 at 4.
125 “What is Lewy Body Dementia?” (27 June 2018),
online: National Institute on Aging <www.nia.nih.gov/health/
what-lewy-body-dementia>.
126 “Symptoms of Lewy Body Dementia” (27 June 2018),
online: National Institute on Aging <www.nia.nih.gov/health/
symptoms-lewy-body-dementia>.
127 “Understanding Parkinson’s” (last visited 8 August
2018), online: Parkinson Canada <www.parkinson.ca/
about-parkinsons/understanding-parkinsons/>.
128 Ibid.
129 “Parkinson’s Disease Dementia” (last visited 8 August
2018), online: Alzheimer’s Association <www.alz.org/dementia/
parkinsons-disease-symptoms.asp>.
130 Ibid.
131 “Frontotemporal Dementia” (last visited 8 August
2018), online: Alzheimer’s Association <www.alz.org/
dementia/fronto-temporal-dementia-ftd-symptoms.asp>
[Frontotemporal Dementia].
132 “Frontotemporal Dementia” (2011) at 2, online
(pdf): Alzheimer Society of Canada <www.alzheimer.ca/
sites/default/les/les/national/other-dementias/other_
dementias_ftd_e.pdf>.
133 Ibid, at 1.
134 “Causes of frontotemporal dementia” (last visited 8
August 2018), online: Alzheimer’s Society United Kingdom
<www.alzheimers.org.uk/info/20007/types_of_dementia/11/
frontotemporal_dementia/4>.
135 “Mixed Dementia” (last visited 8 August 2018), online:
Alzheimer’s Association <www.alz.org/dementia/mixed-
dementia-symptoms.asp#about>.
136 Ibid.
137 “e progression of Alzheimer’s disease and other
dementias” (last visited 15 November 2018), online: Alzheimer’s
270 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Society United Kingdom <www.alzheimers.org.uk/about-
dementia/symptoms-and-diagnosis/how-dementia-progresses/
progression-alzheimers-disease-dementia>.[e progression of
Alzheimer’s disease].
138 Provincial Dementia Action Plan, supra note 20 at 10.
139 e progression of Alzheimer’s disease, supra note 137.
140 Catherine M Speechly, Charles Bridges-Webb & Erin
Passmore, “e pathway to dementia diagnosis” (2008) 189: 9
Medical Journal of Australia487.
141 Laura C Hanson et al. “Improving Decision Making
for Feeding Options in Advanced Dementia: A Randomized,
Controlled Trial” (2011) 59:11 Journal of the American
Geriatrics Society2009.
142 Seniors Health Strategic Clinical Network in
collaboration with Addiction and Mental Health Strategic
Clinical Network, “Appropriate Use of Antipsychotics in
Dementia: What is all the fuss?”, online (pdf ): Alberta Health
Services, <www.albertahealthservices.ca/assets/about/scn/
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143 “Each person’s experience with dementia is unique”
(last visited 8 August 2018), online: Alzheimer Society of
Ireland <www.alzheimer.ie/About-Dementia/Stages-
progression.aspx>.
144 DSM-5, supra note 78.
145 Provincial Guide to Dementia, supra note 28, at 9.
146 Cognitive Impairment Guidelines, supra note 106 at 6.
e guidelines note that identifying and managing cognitive
impairment in culturally and linguistically diverse groups can be
particularly challenging.
147 What is Dementia, supra note 101.
148 “Diagnosing Dementia” (last visited October 30,
3018): National Institute on Aging <www.nia.nih.gov/health/
diagnosing-dementia> [Diagnosing Dementia]; “e
diagnostic process: assessments and tests” (last visited October
30, 3018): Alzheimer Society of Canada <alzheimer.ca/en/Home/
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149 DSM-5, supra note 78 at 602-603.
150 Ibid at 611-614.
151 Cognitive Impairment Guidelines, supra note 106 at 3.
152 Diagnosing Dementia, supra note 148.
153 Guy M McKhann, et al. “e Diagnosis of Dementia
due to Alzheimer’s Disease: Recommendations from the
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the Alzheimer’s Association263–269.PMC. Web. 15 Oct.
2017 at 266.
154 Marilyn S Albert et al, “e diagnosis of mild cognitive
impairment due to Alzheimer’s disease: Recommendations
from the National Institute on Aging-Alzheimer’s Association
workgroups on diagnostic guidelines for Alzheimer’s disease”
(2011) 7:3 Alzheimer’s & Dementia 270 at 271.
155 See Paula Derrow, “4 Controversial Mental Disorders”
(September 10, 2015), online: Berkeley Wellness, <www.
berkeleywellness.com/healthy-mind/mood/article/4-
controversial-mental-health-diagnoses>; Allen J Frances MD,
“DSM 5 is Guide not Bible—Ignore Its Ten Worst Changes”
(December 2, 2012), online: Psychology Today <www.
psychologytoday.com/intl/blog/dsm5-in-distress/201212/
dsm-5-is-guide-not-bible-ignore-its-ten-worst-changes>.
156 Deborah O’Connor, Incapability Assessments: A Review
of Assessment and Screening Tools, Report prepared for the Public
Guardian and Trustee of BC, 2009 at 3, online (pdf ): <www.
trustee.bc.ca/documents/STA/Incapability_Assessments_
Review_Assessment_Screening_Tools.pdf>.
157 Ibid at 33.
158 omas Grisso, Paul S. Appelbaum, Carolyn Hill-
Fotouhi, “e MacCAT-T: A clinical tool to assess patients’
capacities to make treatment decisions” (1997) 48:11 Psychiatric
Services 1415-1419, cited in O’Connor, supra note 156, at 33.
159 Mathy Mezey, “Decision Making in Older Adults with
Dementia” (last visited 30 August 2018), online: ConsultGeri
<consultgeri.org/try-this/dementia/issue-d9> citing Christine
D Cea & Celia B Fisher, “Health care decision making
by adults with mental retardation” (2003) 41:2 Mental
Retardation 78.
160 Kari Lislerud Smebye, Marit Kirkevold & Knut
Engedal, “How do persons with dementia participate in
decision making related to health and daily care? A multi-case
study” (2012) 12:1 BMC Health Services Research 1 at 2.
161 Ibid.
162 See Richard Dworkin, Life’s Dominion: An Argument
about Abortion, Euthanasia, and Individual Freedom (New York:
Alfred A Knopf, 1993) and Rebecca Dresser, “Dworkin on
Dementia: Elegant eory, Questionable Policy” (1995) 25:6
Hastings Center Report 32 at 32, discussed in Margaret Isabel
Hall, Dementia, “Decision-Making, and the Modern (Adult)
Guardianship Paradigm: Bentley v Maplewood Seniors Care
Society” (2015) 1 CJCCL 293 at 296, and Winston Chiong,
Dementia and personal identity: implications for decision-
making, Handbook of Clinical Neurology, Volume 118, 3
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series, 409-418.
163 Hall, supra note 162.
164 Chiong, supra note 162.
165 BPSD Guideline, supra note 1 at 4. ey are more
commonly referred to as neuropsychiatric symptoms (NPS)
in the USA by the International Psychogeriatric Association.
See Carol Dillon et al, “Behavioral Symptoms Related to
Cognitive Impairment” (2013) 9 Neuropsychiatric Disease and
Treatment 1443.
166 Harrigan, supra note 3 at 8.
167 Constantine G Lyketsos et al, “Prevalence of
Neuropscyhiatric Symptoms in Dementia and Mild Cognitive
Impairment” (2002) 288:12 JAMA 1475; M Margallo-
Lana et al, “Prevalence and Pharmacological Management
of Behavioural and Psychological Symptoms Amongst
Dementia Suerers Living in Care Environments” (2001) 16:1
International Journal of Geriatric Psychiatry 39.
168 Helen C Kales, Laura N Gitlin & Constantine G
Lyketsos, “Management of Neuropsychiatric Symptoms of
Dementia in Clinical Settings: Recommendations from a
Multidisciplinary Expert Panel”(2014) 62:4 Journal of the
American Geriatrics Society762.
169 Constantine G Lyketsos et al, “Neuropsychiatric
symptoms in Alzheimer’s disease”(2011) 7:5 Alzheimer’s &
dementia: the journal of the Alzheimer’s Association 532.
170 Laura N Gitlin, Helen C Kales & Constantine G
Lyketsos, “Nonpharmacologic Management of Behavioral
Symptons in Dementia” (2012) 308:19 JAMA 2020 at 2021.
171 Michelle Brasure et al, Nonpharmacologic Interventions
for Agitation and Aggression in Dementia (Rockville (MD):
Agency for Healthcare Research and Quality (US), 2016),
online: <www.ncbi.nlm.nih.gov/books/NBK356163/>.
Endnotes 271
172 Joaquim Cerejeira, Licinio Lagarto & Elizabeta
B Mukaetova-Ladinska, “Behavioral and Psychological
Symptoms of Dementia” (2012) 3 Frontiers in Neurology 1.
173 Gitlin et al, supra note 170 at 2021.
174 Marianne Smith & Kathleen Buckwalter, “Behaviors
associated with dementia. Whether resisting care or
exhibiting apathy, an older adult with dementia is attempting
communication” (2005) 105:7 American Journal of
Nursing 40 at 45.
175 International Psychogeriatric Association, e IPA
Complete Guide to Behavioural and Psychological Symptoms of
Dementia (1998) Rev 2012, online (pdf): <www.bsa.ualberta.
ca/sites/default/les/____IPA_BPSD_Specialists_Guide_
Online.pdf>.
176 See P.I.E.C.E.S., supra note 32.
177 Smith & Buckwalter, supra note 174 at 45.
178 Kezia Scales, Sherly Zimmerman & Stephanie J. Miller,
“Evidence-Based Nonpharmacological Practices to Address
Behavioural and Psychological Symptoms of Dementia” (2018)
58:1 e Gerontologist S88 at S89.
179 Gitlin et al, supra note 170 at 2021.
180 R Overshott& ABurns,“A Treatment of dementia.
Journal of Neurology, Neurosurgery & Psychiatry” (2005) 76:5
Journal of Neurology, Neurosurgery & Psychiatry v53-v58.
181 Kristina Gotovac et al, “Biomarkers of aggression in
dementia” (2016) 69 Progress in Neuro-Psychopharmacology
and Biological Psychiatry 125 at 126.
182 Peter Rabins, Constantine Lyketsos & Cynthia
Steele (1999).
183 Ibid.
184 Ibid.
185 Karen Amann Talerico, Lois K Evans & Neville
E Strumpf, “Mental Health Correlates of Aggression in
Nursing Home Residents with Dementia” (2002) 42:2 e
Gerontologist 169 citing Beverly Hoeer et al, “Reducing
aggression during bathing cognitively impaired nursing home
residents” (1997) 23:5 Journal of Gerontological Nursing 16.
186 Donna L Algase et al, “Need-driven dementia-
compromised behavior: An alternative view of disruptive
behavior” (1996) 11:6 American Journal of Alzheimer’s
Disease 10 at 13.
187 Ibid; Karen Talerico & Lois K. Evans, “Making Sense
of Aggressive/Protective Behaviors in Persons with Dementia”
(2000) 1:4 Alzheimer’s Care Quarterly 77.
188 Hans Ragneskog et al, “Probable Reasons for Expressed
Agitation in Persons with Dementia” (1998)7:2 Clinical
Nursing Research189.
189 Ibid.
190 “Treatments” (last visited 8 August 2018), online:
Alzheimer’s Association <www.alz.org/alzheimers_disease_
treatments.asp>.
191 “yroid disorders” (last visited November 1, 2018),
online: Alzheimer Europe <www.alzheimer-europe.org/
Dementia/Other-forms-of-dementia/Metabolic-diseases/
yroid-disorders#fragment1>.
192 “Treatments for Behavior” (last visited 8 August 2018),
online: Alzheimer’s Association <www.alz.org/alzheimers-
dementia/treatments/treatments-for-behavior#non-drug>
[Treatments for Behavior].
193 “Brain health” (last modied 23 November 2017),
online: Alzheimer Society of British Columbia <alzheimer.ca/en/
bc/About-dementia/Brain-health>.
194 “Eating and drinking” (last visited 11 December 2018),
online: Alzheimer’s Society United Kingdom <www.alzheimers.
org.uk/get-support/daily-living/eating-drinking>.
195 Sleep and Function Interdisciplinary Group, University
of Alberta, “Sleep: a critical but overlooked aspect of dementia
management”, cited in “Sleep” (last visited November 26,
2018), online: Alzheimer Society of Alberta and the Northwest
Territories <alzheimer.ca/en/ab/Living-with-dementia/
Day-to-day-living/Sleep>.
196 “Reducing Stress”, (last visited 11 December
2018), online: Alzheimer’s Association <www.alz.org/
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197 “Medications for Memory” (last visited 8 August 2018),
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dementia/treatments/medications-for-memory> [Medications
for Memory].
198 “Treating FTD” (last visited 23 November 2018), online:
e Association for Frontotemporal Degeneration <www.theaftd.
org/for-health-professionals/treating-ftd/>.
199 Medications for Memory, supra note 197.
200 “Drugs approved for Alzheimer’s disease” (last visited
31 October 2018), online: Alzheimer’s Society of BC <alzheimer.
ca/en/bc/Living-with-dementia/Treatment-options/Drugs-
approved-for-Alzheimers-disease [Drugs approved for
Alzheimer’s disease]>.
201 Konstantina G Yiannopoulou & Sokratis G
Papageorgiou, “Current and Future Treatments for Alzheimer’s
Disease”(2013) 6:1 erapeutic Advances in Neurological
Disorders19 at 20.
202 Neugroschl, Judith, and Wang, Sophia. “Alzheimer’s
Disease: Diagnosis and Treatment Across the Spectrum of
Disease Severity” (2011) 78:4 e Mount Sinai Journal of
Medicine 596–612 Web. 21 Oct. 2017, at 5.
203 Ibid at 6.
204 Drugs approved for Alzheimer’s disease, supra note 200.
205 Ibid.
206 “Memantine Hydrochloride” (last visited 31 October
2018), online (pdf ): Alzheimer Society of Canada <alzheimer.ca/
sites/default/les/Files/national/Drugs/Drug_Memantine_e.
pdf> [Memantine Hydrochloride].
207 Medications for Memory, supra note 197.
208 “Drug approval process for the treatment of Alzheimer’s”
(last visited 31 October 2018), online (pdf ): Alzheimer Society of
Canada <alzheimer.ca/sites/default/les/les/national/research/
research_drug_approval_e.pdf>.
209 Memantine Hydrochloride, supra note 206.
210 Rupert McShane, Almudena Areosa Sastre & Neda
Minakaran, “Memantine for dementia” (2006) Cochrane
Database Syst Rev. 19:2 1465.
211 Gustavo Alva & Jerey L Cummings, “Relative
tolerability of Alzheimer’s treatments” (2008) Psychiatry
(Edgmont) 5:11 27.
212 Ian Maidment et al, “Ecacy of memantine on
behavioral and psychological symptoms related to dementia: a
systematic meta-analysis” (2008) Ann Pharmacother 42:1 32;
Martin Farlow, “A clinical overview of cholinesterase inhibitors
in Alzheimer’s disease” (2002) Int Psychogeriatr 14:1: 93;
Jacqueline Birks, “Cholinesterase inhibitors for Alzheimer’s
disease” (2006) Cochrane Database Syst Rev 1.
213 See Canada, Standing Senate Committee on Social
Aairs, Science and Technology, Prescription of Pharmaceuticals
in Canada: O-Label Use (January 2014, Chair: Kelvin K.
272 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Ogilvie), at 3-5, for a discussion of meaning of the concept
o-label use.
214 BPSD Guideline, supra note 1 at 6.
215 Ibid.
216 Carol A Tamminga & Adrienne C Lahti, “Treatments
for chronic psychosis” (2001) 3:4 Dialogues in Clinical
Neuroscience 281 at 282.
217 Treatments for Behavior, supra note 192.
218 “Orthostatic hypotension (postural hypotension)” (11
July 2017), online: Mayo Clinic <www.mayoclinic.org/diseases-
conditions/orthostatic-hypotension/symptoms-causes/
syc-20352548>.
219 Mary Ann E Zagaria, “Common Adverse Eects of
Antipsychotic Agents in the Elderly”, US Pharmacist 35:11
(17 November 2010), online: <www.uspharmacist.com/
article/common-adverse-eects-of-antipsychotic-agents-in-
the-elderly>.
220 “Treatments for Behavior,” supra note 192.
221 “Dementia: Medicines to Treat Behaviour Changes”
(last visited 1 November 2018), online: Healthlink BC <www.
healthlinkbc.ca/health-topics/hw136091>.
222 Health Canada, Risperidone—Restriction of the Dementia
Indication (recall) (18 February 2015), online: Government
of Canada <healthycanadians.gc.ca/recall-alert-rappel-avis/
hc-sc/2015/43797a-eng.php> [emphasis in the original source].
223 Antipsychotics Black Box Warnings
for Elderly Patients (updated May 24, 2018),
online: Very Well Mind <www.verywellmind.com/
antipsychotic-medications-black-box-warning-379657>.
224 Jan N M Schieveld et al, “On Benzodiazepines,
Paradoxical Agitation, Hyperactive Delirium, and Chloride
Homeostasis” (2018) 46:9 Critical Care Medicine Journal 1558.
225 Judith Neugroschl & Sophia Wang, “Alzheimer’s
Disease: Diagnosis and Treatment Across the Spectrum
of Disease Severity” (2011) 78:4 Mount Sinai Journal of
Medicine: A Journal of Translational and Personalized
Medicine 596 at 608.
226 Yiannopoulou & Papageorgiou, supra note
201 at 21 citing Ronald F Zec & Nicole R Burkett,
“Non-pharmacological and pharmacological treatment of the
cognitive and behavioural symptoms of Alzheimer disease”
(2008) 23:5 Neuro Rehabilitation 425.
227 “Benzodiazepine use may raise risk of Alzheimer’s
disease” (10 September 2014), online: Harvard Health
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may-raise-risk-alzheimers-disease-201409107397>.
228 “Alternative drugs to antipsychotics” (last visited 1
November 2018), online: Alzheimer Society of UK <www.
alzheimers.org.uk/about-dementia/treatments/drugs/
antipsychotic-alternatives>.
229 Neugroschl & Wang, supra note 225 at 608.
230 “Pharmacological recommendations for the
symptomatic treatment of dementia: the Canadian Consensus
Conference on the Diagnosis and Treatment of Dementia
2012”, online: Alzheimer’s Research and erapy <alzres.
biomedcentral.com/articles/10.1186/alzrt201>.
231 “Lacmictal (Lamotrigine): Drug Safety
Communication—Serious Immune System Reaction”
(25 April 2018) online: US Food and Drug Administration
<www.fda.gov/safety/medwatch/safetyinformation/
safetyalertsforhumanmedicalproducts/ucm605628.htm>.
232 “Depression” (last visited 31 October 2018), online: Alz.
org <www.alz.org/help-support/caregiving/stages-behaviors/
depression>.
233 Yianopoulou & Papageorgiu, supra note 201 at 21 citing
Zec & Burkett, supra note 226.
234 See: Nicolas Farina, Lucy Morrell & Sube Banerjee,
“What is the therapeautic value of antidepressants in
dementia? A narrative review” (2016) 32:1 International
Journal of Geriatric Psychiatry 32; Banerjee et al, “Study of
the use of antidepressants for depression in dementia: the
HTA-SADD trial – a multicentre, randomised, double-blind,
placebo controlled trial of the clinical eectiveness and cost-
eectiveness of sertraline and mirtazapine” (2013) 17:7 Health
Technology Assessment 1; Clive Ballard et al, “Management of
agitation and aggression associated with Alzheimer’s disease:
controversies and possible solutions” (2009) 22:6 Current
Opinion in Psychiatry 532.
235 Canadian Agency for Drugs and Technologies in
Health, “Antidepressants in Elderly Patients with Depression
and Dementia: A Review of Clinical Eectiveness and
Guidelines“ (Ottawa (ON), 24 August 2015).
236 Dementia Australia, Pain and Dementia (2011),
online (pdf): Dementia Australia <www.dementia.org.
au/les/helpsheets/Helpsheet-DementiaQandA16-
PainAndDementia_english.pdf> [Pain and Dementia].
237 Alzheimer Society Ontario, Pain Matters: A Family
Guide to Pain Management in Dementia, online: Alzheimer
Society Ontario <alzheimer.ca/en/on/We-can-help/Resources/
Pain%20Matters>.
238 Pain and Dementia, supra note 236.
239 Ibid.
240 Marian Osterweis, Arthur Kleinman & David
Mechanic, eds, Pain and Disability: Clinical, Behavioral, and
Public Policy Perspectives (Washington, DC: National Academy
Press, 1987) at 146.
241 Sharon Kaasalainen et al, “Pain management decision
making among long-term care physicians and nurses” (2007)
29:5 Western Journal of Nursing Research 561 at 563.
242 Ibid at 563 citing Sharon Kaasalainen et al, “Pain and
cognitive status of institutionalized elderly: Perceptions and
interventions” (1998) 28:4 Journal of Gerontological Nursing
24; and Margo McCaery, Betty Ferrell & Chris Pasero,
“Nurses’ personal opinions about patients’ pain and their eect
on recorded assessments and titration of opioid doses” (2000)
1:3 Pain Management Nursing 79; Laurence Nègre-Pagès
et al on behalf of the DoPaMiP study group, “Chronic pain
in Parkinson’s disease: the cross-sectional French DoPaMiP
survey” (2008) 23:10 Movement Disorder Society 1361; Erik
J A Scherder & Anke Bouma, “Is Decreased Use of Analgesics
in Alzheimer Disease Due to a Change in the Aective
Component of Pain?” (1997) 11:3 Alzheimer Disease and
Associated Disorders 171.
243 See, example, Algorithm for Accommodating and
Managing BPSD in Residential Care, online: BC BPSD
Algorithm Website <www.bcbpsd.ca>.
244 Diane L Chau et al, “Opiates and elderly: Use and side
eects” (2008) 3:2 Clin Interv Aging 273.
245 Ibid at 8; James Stevenson et al, “Managing
comorbidities in patients at the end of life” (2004) 329:7471 e
BMJ 909 at 910; Graziano Onder et al, “Strategies to reduce the
risk of iatrogenic illness in complex older adults” (2013) 42:3
Age and Aging 284; Phillip A Atkin et al, “e Epidemiology
Endnotes 273
of Serious Adverse Drug Reactions Among the Elderly” (1999)
14 Drugs Aging 141.
246 Gijsbertus Ziere et al, “Polypharmacy and falls in the
middle age and elderly population” (2006) 61:2 British Journal
of Clinical Pharmacology 218.
247 Anna Kennerfalk et al, “Geriatric Drug erapy and
Healthcare Utilization in the United Kingdom” (2002) 36:5 e
Annals of Pharmacotherapy 797 at 798.
248 Johanna Jyrkkä et al, “Patterns of drug use and factors
associated with polypharmacy and excessive polypharmacy in
elderly persons” (2009) 26:2Drugs Aging 493 at 498.
249 Shih-Wei Lai et al, “Association between polypharmacy
and dementia in older people: a population-based case-control
study in Taiwan”(2012) 12:3Geriatrics & Gerontology
International 491.
250 Ian A Scott & Sisira Jayathissa, “Quality of drug
prescribing in older patients: is there a problem and can we
improve it?” (2010) 40 Internal Medicine Journal 7.
251 Balamurugan Tangiisuran et al, “Adverse drug
reactions in elderly: challenges in identication and improving
preventative strategies” (2009) 38:4 Age and Ageing 358.
252 Arduino A Mangoni & Stephen H D Jackson,
“Age-related changes in pharmacokinetics and
pharmacodynamics: basic principles and practical applications”
(2004) 57:1 British Journal of Clinical Pharmacology 6 at 7.
253 Ibid.
254 Ronald I Shorr et al, “Opioid Analgesics and the Risk
of Hip Fracture in the Elderly: Codeine and Propoxyphene”
(1992) 47:4 Journal of Gerontology M111 at M114. In this
study the control group were ‘age and sex matched’ with the
group receiving the medications.
255 Diane L Chau et al, supra note 244.
256 Roy J. Romanow, Building on Values: e Future of Health
Care in Canada (Ottawa: Commission on the Future of Health
Care in Canada, 2002) at 3.
257 HCCA, supra note 11, s 1.
258 Ibid.
259 Ibid.
260 Ibid; Health Care Consent Regulation, BC Reg 20/2000, s
4 [HCC Reg].
261 HCCA, supra note 11, s 1.
262 Ibid; See also Bentley (Litigation Guardian of) v
Maplewood Seniors Care Society, 2014 BCSC 165 [Bentley]
(claried that feeding with a spoon or glass was a personal care
service, not a form of health care at para 121).
263 “Legal Issues in Residential Care: An Advocate’s
Manual” at 136, online (pdf): Seniors First BC <seniorsrstbc.
ca/for-professionals/legal-issues-residential-care/> [Seniors
First Advocate’s Manual].
264 Bentley, supra note 262.
265 Ibid at para 144.
266 1996, SO 1996, c 2, Schedule A [Ontario HCCA].
267 Cuthbertson v Rasouli, 2013 SCC 53 [Rasouli].
268 Bentley, supra note 262 at para 82.
269 Health Statutes Amendment Act, supra note 61.
270 e BC Ombudsperson recommended that Part 3 of the
HCCA be brought into force in the report, BC Ombudsperson,
e Best of Care: Getting It Right for Seniors in British Columbia
(Part 2) (2009) at 243, online: e Oce of the Ombudsperson
<bcombudsperson.ca/documents/best-care-getting-it-right-
seniors-british-columbia-part-2>[Best of Care 2].
271 Government of BC, News Release, “Signicant
funding boost to strengthen care for B.C. seniors” (9
March 2017), online: Government of BC <news.gov.bc.ca/
releases/2017HLTH0052-000529>.
272 A section 7 agreement may only cover admission to a
family care home, a group home for the mentally handicapped,
or a mental health boarding home. See RAA, supra note 360,
section 7(2).
273 Health Statutes Amendment Act, supra note 61, cl
6-10, HCCA, s 1.
274 Health Statutes Amendment Act, supra note 61, cl 20.
275 Note that Greyell J commented in Bentley, supra
note 262, at 124 that “when an adult is incapable of making
a personal care decision and has no personal guardian and
no representative, the common law principles of personal
autonomy and bodily integrity require that at minimum a
service provider should consult with friends and family of the
adult, who are best placed to know what the adult would have
wanted, and with any written wishes the adult documented.”
is language suggests that admission decisions could be made
by family and close friends.
276 Hopp v Lepp [1980] 2 SCR 192, 1980
CanLII 14 [Hopp].
277 Reibl v Hughes, [1980] 2 SCR 880, 1980
CanLII 23 [Reibl].
278 Judith Wahl, Mary Jane Dykeman & Brendan Gray,
“Health Care Consent and Advance Care Planning in
Ontario: Legal Capacity, Decision Making and Guardianship”
(2014) at 45, online (pdf ): Law Commission of Ontario
<www.lco-cdo.org/en/our-current-projects/legal-capacity-
decision-making-and-guardianship/funded-research-
papers-legal-capacity-decision-making-and-guardianship/
health-care-consent-and-advance-care-planning-in-
ontario-2/> citing Lorne E. Rozovsky, e Canadian Law
of Consent to Treatment, 3d ed (Canada: LexisNexis, 2003)
at 161 [Wahl].
279 Gerald Robertson, “Health Law in the 21st Century
Informed Consent 20 Years Later,” (2003) Health LJ 153
Special Edition at 153 [Robertson - 20 Years].
280 Fleming, supra note 54 at para 33.
281 Simon N Verdun-Jones & Michelle S Lawrence, “e
Charter Right to Refuse Psychiatric Treatment: A Comparative
Analysis of the Laws of Ontario and British Columbia
Concerning the Right of Mental Health Patients to Refuse
Psychiatric Treatment” (2013) 46:2 UBC L Rev 489 at 492
[Verdun-Jones].
282 Manitoba (Director of Child & Family Services) v c (A.),
2009 SCC 30 at para 199 citing Malette v Schulman et al (1990),
72 OR (2d) 417,1990 CanLII 6868 (ON CA).
283 Hopp, supra note 276; Reibl, supra note 277.
284 Rasouli, supra note 267.
285 Ciarlariello v Schacter, [1993] 2 SCR 119, 1993 CanLII
138 [Ciarlariello].
286 Hopp, supra note 276.
287 Ibid at 210.
288 Jean Torrens, “Informed Consent and the Learned
Intermediary Rule in Canada,” (1994) 58:2 Sask L Rev 399
at note 25, citing White v. Turner, (1981), 31 OR (2d) 773 at
789 [Torrens].
289 Robertson - 20 Years, supra note 279 at 155.
290 Torrens, supra note 288 at 404.
291 Ibid.
274 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
292 Robertson - 20 Years, supra note 279 at 155.
293 Wahl, supra note 278 at 44.
294 Ibid.
295 Ciarlariello supra note 285.
296 Torrens, supra note 288 at 401.
297 Nadine Fontigny, “When Yes Really Means Yes: e
Law of Informed Consent in Canada Revisited” (1996) 4:3
Health L Rev 17 at note 10.
298 Ciarlariello, supra note 285 at para 54.
299 Ibid at paras 54-55.
300 Ibid.
301 Robertson - 20 Years, supra note 279 at notes 16 and 17.
302 Kern v Forest, 2010 BCSC 938, citing Sadlowski v Yeung,
2008 BCSC 456 at para 1.
303 Lue v St. Michael’s Hospital, [1997] OJ no 255, 21 OTC
197 at para 114 [Lue v St Michael’s].
304 Ibid at para 116.
305 Torrens, supra note 288 at 405-406.
306 William McNally, Andrea Manning-Kroon & Barb
Cotton, “An Overview of the Law Regarding Informed
Consent” at 9, online (pdf): Bottom Line Research and
Communications <www.bottomlineresearch.ca/pdf/informed_
consent.pdf>.
307 Torrens, supra note 288 at note 41 citing Layton v.
Wescott (1992), 6 Alta LR (3d) 91 at 102 (QB).
308 Ibid citing Gerald Robertson, “Informed Consent Ten
Years Later: e Impact of Reibl v. Hughes” (1991) 70 Can Bar
Rev 423 at 431.
309 Ibid at 406.
310 Ibid; Ontario HCCA, supra note 266; Consent to
Treatment and Health Care Directives Act, RSPEI 1988, c
C-17.2 [PEI Consent to Treatment Act]; Care Consent Act, SY
2003, c 21, Schedule B [Yukon Care Consent Act]; Civil Code
of Quebec, CQLR c C-1991, arts 11-25 [Civil Code of Quebec];
See also See also Jennifer A. Chandler & Colleen M. Flood,
eds, Law and Mind: Mental Health Law and Policy in Canada
(Ontario: LexisNexis Canada, 2016) at 101 [Law and Mind]. It
should be noted that all other Canadian jurisdictions are subject
to the common law of informed consent to health care.
311 HCCA, supra note 11, s 4.
312 e new federal legislation on medically assisted death
also references a capacity requirement.
313 HCCA, supra note 11, s 6.
314 Ibid.
315 Ibid.
316 Ibid, s 8. See also Adult Guardianship Act, supra note
82, s 3 (2) (“An adult’s way of communicating with others is
not grounds for deciding that he or she is incapable of making
decisions about [health care]”).
317 HCCA, supra note 11, s 9(1.1). An advance directive
cannot be used to provide consent to health care for which
a person chosen under section 16 could not give substitute
consent under section 18 (1), which includes, inter alia,
experimental health care, participation in non-approved
medical research and any treatment, procedure or therapy that
involves using aversive stimuli to induce a change in behaviour:
HCC Reg, supra note 204, s 5.
318 Again, excluding Quebec, which does not set out any
elements of consent.
319 MHA, supra note 55, s 31.
320 HCCA, supra note 11, s 2.
321 HCCA, supra note 11, s 1.
322 Ibid.
323 RC Reg, supra note 14, s 81(3).
324 Ibid, s 81(3)(a).
325 HCCA, supra note 11, s 1.
326 RSBC 1996, c 183 [HPA]. is list in this section of the
report is not exhaustive.
327 Called “medical practitioners” in the Act and Regs:
Medical Practitioners Regulation, BC Reg 416/2008.
328 It should be noted that at this time the BC Government
intends to bring the BC Care Aide and Community Health
Worker Registry under the new amalgamated single nursing
regulatory body, with a view to improving regulation of all
Health Care Assistants, including those who work in long-
term care. Details of this proposed change are discussed in
Chapter 5 of this Report. See Government of BC, “Health Care
Assistants Oversight Policy Intentions Paper for Consultation”,
(November 2016) online: <www2.gov.bc.ca/assets/gov/health/
practitioner-pro/professional-regulation/hca_new.pdf>.
329 ey do, however, have a common law duty to obtain for
personal care. Otherwise, their actions may constitute a battery.
330 British Columbia Law Institute, Report on Common-
Law Tests of Capacity, BCLI Report 73 (2013) at 17 [BCLI
CL Capacity Report]. e categories of status, outcome and
functional approach to mental capability is rooted in the work
of the Law Commission for England and Wales, Consultation
Paper on Mentally Incapacitated Adults and Decision-Making:
An Overview, CP 119 (1991) at 50-53 and the Law Reform
Commission of Ireland, Consultation on Vulnerable Adults and
the Law: Capacity, LRC CP 37-2005 (2005) at 41–50.
331 BC Adult Abuse and Neglect Prevention Collaborative,
Provincial Strategy Document: Vulnerable Adults and Capability
in BC, at 17.
332 Court decisions reinforce the decision-specic nature
of capability determination in the health care context. e
Court in Rasouli, supra note 267 at para 79 stated “the common
law denition of capacity in the context of making decisions
about medical treatment is the ability to understand the
nature, the purpose and the consequences of the proposed
treatment.” is statement was recently armed in the BC
Supreme Court decision of A.A. in the matter of Carter v Canada
(Attorney General), 2016 SCC 4, 2016 BCSC 570; HCCA, supra
note 10, s 7.
333 BCLI Report on CL Tests, supra note 330 at 1.
334 Ibid; Ontario HCCA, supra note 266; PEI Consent to
Treatment Act, supra note 310 ; Yukon Care Consent Act, supra
note 310; Civil Code of Quebec, supra note 310, arts 11-25; See
also Law and Mind, supra note 310. It should be noted that all
other Canadian jurisdictions are subject to the common law of
informed consent to health care.
335 HCCA, supra note 11, s 5(2).
336 Ibid, s 17(2).
337 Ibid, s 17(2.1).
338 Ibid, s 17(2.2).
339 If patient found incapable, may obtain consent from
substitute decision maker: HCCA, supra note 11, s 11 (personal
guardian or representative), s 16 (TSDM).
340 Urgent or emergency health care: “in order to preserve
the adult’s life, to prevent serious physical or mental harm or to
alleviate severe pain,” Ibid, s 12.
341 To “undertake triage or another kind of preliminary
examination, treatment or diagnosis,” Ibid, s 13.
342 Ibid, s 11.
Endnotes 275
343 Ibid, s 11.
344 A temporary substitute decision maker has authority
to consent to major health care under s 14 and to minor health
care under s 15.
345 HCCA, supra note 11, s 10.
346 Ibid, s 12 (i).
347 Ibid, ss 12 (1)(c), 12(2).
348 Ibid, s 12(1)(d).
349 Ibid, s 12.1.
350 British Columbia,Ocial Report of Debates of the
Legislative Assembly (Hansard), 37-3, Vol 7, No 14 (14 May
2002) at 3461 (Hon K. Whittred).
351 HCCA, supra note 11, s 12(3). However, where the
health care provider believes that the substitute decision maker
has not complied with their duties under the HCCA, they
may go ahead and provide the emergency health care anyway:
s 12.2, HCCA.
352 Ibid, s 13.
353 SBC 2008, c 28.
354 Ontario HCCA, supra note 266, s 1(b); PEI Consent to
Treatment Act, supra note 310, s 1(ii).
355 Ontario HCCA, supra note 266, s 1(g); PEI Consent to
Treatment Act, supra note 310, s 1(vii).
356 Civil Code of Quebec, supra note 310, art 11.
357 Civil Code of Quebec, supra note 310, art 13.
358 “Supported decision-making: An alternative to
guardianship” (last visited 12 December 2018) at 3, online (pdf ):
Mental Disability Advocacy Center <mdac.info/en/resources/
supported-decision-making-alternative-guardianship>.
359 Ibid.
360 RSBC 1996, c 405 [RAA].
361 Ibid, s 7.
362 “Routine management of the adult’s nancial aairs” is a
broad category. Section 7(b) states that it includes: “(i) payment
of bills, (ii) receipt and deposit of pension and other income,
(iii) purchases of food, accommodation and other services
necessary for personal care, and (iv) the making of investments.”
e Representation Agreement Regulation provides a lengthy
list of activities that are included, such as opening accounts,
renewing a mortgage, applying to defer property taxes, making
donations (under certain circumstances), completing income
tax returns, and redirecting mail. See Representation Agreement
Regulation, BC Reg 199/2001, s 2(1).
363 Ibid.
364 Ibid, s 9.
365 e dissimilar statutory drafting of sections 7 and 9 of
the Act suggest that only section 7 was intended to capture
supported decision making. Comments by Robert Gordon, who
was one of the drafters of the statute, conrm this perspective:
see Robert Gordon, “e Emergence of Assisted (Supported)
Decision-Making in the Canadian Law of Adult Guardianship
and Substitute Decision-Making” (2000) 23:1, Intl J L &
Psychiatry 61. Ministry of Health templates for representation
agreements also conrm this interpretation: the section 7
template allows a person to indicate whether the agreement is
to “help me make decisions” or “make decisions on my behalf ”;
this option is not available on the section 9 agreement template.
See “Incapacity Planning” (last visited 12 December 2018),
online: Government of BC <www2.gov.bc.ca/gov/content/
health/managing-your-health/incapacity-planning>.
366 e supportive decision maker is called an “associate
decision maker” in the Yukon. In the Yukon a representative is a
substitute decision maker authorized by agreement. Under the
Adult Guardianship and Trusteeship Act of Alberta a “supporter”
can be empowered via a document called a supported decision
making authorization. In Alberta and Saskatchewan a
“co-decision maker” can also be authorized via a court process.
367 CCEL, Understanding the Lived Experience of
Supported Decision Making, 2017: online: <www.bcli.org/
project/understanding-lived-experience-supported-decision-
making> [Understanding the Lived Experience of Supported
Decision Making].
368 Decision-Making Support and Protection to Adults Act, SY
2003, c 21, s 5(1).
369 HCCA, supra note 11, s 8.
370 Hall, supra note 162 at 296.
371 Law Commission of Ontario, Legal Capacity, Decision-
making and Guardianship, Final Report (2017) at 64. [LCO
Report on Capacity].
372 Gerald B. Robertson, “Mental Health” in Joly Yann &
Bartha M. Knoppers, eds, Routledge Handbook of Medical Law
and Ethics, (New York: Routledge, 2015) [Routledge]. e
common law principle of parens patriae gives the court broad
jurisdiction to make an order to protect an individual who does
not have capacity.
373 Ibid.
374 MHA, supra note 55, s 31.
375 HCCA, supra note 11, s 11, and PPA, supra note 383, s 19.
376 RAA, supra note 360, ss 7, 9.
377 Ibid, s 7(1)(c).
378 “Refusing Health Care: What are my Rights?” (2016),
online (pdf): Nidus Personal Planning Resource Centre and
Registry <www.nidus.ca/?page_id=255>.
379 RAA, supra note 360, s 9(1)(b).
380 Ibid, s 9(3).
381 HCCA, supra note 11, s 34; HCC Reg, supra note 260, s 5.
382 RAA, supra note 360, s 8.
383 Patient’s Property Act, RSBC 1996, c 349, s 6 [PPA].
384 Ibid, s 15.
385 Ibid, s 16.
386 ere is some case law that suggests that this reference
in the jurisprudence to the benet of the person’s family only
applies with respect to nancial decision making, not health
care decisions. Leeming (Re); Mawdsley v. Austin, [1984] B.C.J.
No. 3048 at para 10.
387 PPA, supra note 383, s 18.
388 HCCA, supra note 11, s 11.
389 Ibid, s 16(1).
390 Ibid, s 16(2).
391 Ibid, s 16(3).
392 Health care providers are required to complete Form
1 each time for each major health care decision for which
substitute consent occurs under section 16: see HCC Reg, supra
note 260, s 6. Although the obligation to notify the adult of the
appointment of a TSDM for major health care is clearly laid
out in the HCCA at s 14(4)(b), this section does not require
notice in writing.
393 Ibid.
394 Ibid, s 16(4).
395 Ibid, s 17(1).
396 Ibid, ss 18(1)–(2). See Duties of a temporary substitute
decision maker, ibid, s 19(1) and (2).
397 Ibid, ss 5, 34; HCC Reg, supra note 260, s 5(1).
398 HCCA, supra note 11, Part 2.1.
276 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
399 Wahl, supra note 278 at 108.
400 HCCA, supra note 11, s 19.7.
401 HCCA supra note 11, s 19.7(1); or in the case of
emergency health care, if neither a personal guardian nor
representative is reasonably available, HCCA, s 12; An
exception exists to the priority of a representation agreement
over an advance directive where an adult species in their
representation agreement that a health care provider need
not obtain a representative’s consent for health care decisions
covered in the adult’s advance directive: HCCA, s 19.3(2).
402 Ibid, s 19.7(3).
403 Ibid, s 19.9.
404 is is unless the advance directive expressly states that
the advance directive is to apply regardless of any change in
medical knowledge.
405 HCCA, supra note 11, s 19.8.
406 Ibid, ss. 9, 19.7–19.8. is is in contrast with Ontario,
where the substitute decision maker must interpret the
advance directive: See Wahl, supra note 278 at 110. Note,
a representative who is tasked with making the health care
decision will be required to interpret the advance directive for
the purpose of complying with expressed known wishes: HCCA,
supra note 11, s 19.3.
407 HCCA, supra note 11, s 19.1.
408 HCC Reg, supra note 260 s 5(1).
409 PPA, supra note 383.
410 RAA, supra note 360.
411 HCCA, supra note 11, Part 2.1.
412 Ibid, s 16.
413 PPA, supra note 383.
414 HCCA, supra note 11, s 19.3(1)(a).
415 Ibid, s 19.3(2).
416 Ibid, s 19.3(1)(b).
417 RAA, supra note 360, s 16 (1).
418 HCCA, supra note 11, s 16(2).
419 RAA, supra note 360, s 16(2.1)
420 Ibid, ss 9(1)(b)(vii)–(viii).
421 HCCA, supra note 11, s 19(1)(a).
422 Section 18 was amended and subsection (2) added
by SBC 2014-9-35. e subsection came into force on 1
December 2014.
423 HCCA, supra note 11, s 4(e).
424 RAA, supra note 360, s 16(3); HCCA, supra note
11, s 19(1)(b).
425 RAA, supra note 360, s 16(3).
426 HCCA, supra note 11, s 19(1)(b).
427 When it comes to appointing a committee, a court
should consider the known wishes expressed by the adult as to
their preference of committee, provided the wishes are rational
and reasonable: Palamarek (Re), 2011 BCSC 563, at para 193.
428 “Private Committee Handbook” (2014), online (pdf ):
Public Guardian and Trustee of British Columbia <www.
trustee.bc.ca/Documents/PCS/PCS%20Handbook.pdf>
[PGT Handbook].
429 Ibid at 29.
430 Ibid.
431 Adult Guardianship Act, supra note 82, as amended by,
Part 2 [not in force], s 29(1) – (2), online: <www.bclaws.ca/
civix/document/id/consol9/consol9/sup00600#section%2029>.
432 Ibid, 20(3)(a).
433 HCCA, supra note 11, s 16(2); RAA, supra note
360, s 16(4).
434 HCCA, supra note 11, s 19(3)(a).
435 Ibid s 19(3).
436 Leeming, supra note 386.
437 See for example, Melinda Munro, “Guardianship of
Adults: Good Faith and the Philosophy of Mental Disability in
British Columbia”, (1997) 14 Can. J. Fam. L. 217-246.
438 DSM-5, supra note 78.
439 MHA, supra note 55, ss 1 (denition of “treatment”), 31;
See also John F. Gray. Margaret A. Shone & Peter F. Liddle,
Canadian Mental Health Law and Policy (Ontario: LexisNexis,
2008) [Gray].
440 MHA, supra note 55, s 22.
441 Ibid, s 1.
442 Mental Health Regulation B.C. Reg. 233/99, s 11 [Mental
Health Reg].
443 MHA, supra note 55, ss 22–23.
444 Mental Health Reg, supra note 442, (Form 5 Consent for
Treatment (Involuntary Patient)) [Form 5].
445 Ibid.
446 MHA, supra note 55, s 8.
447 Form 5, supra note 444.
448 Operating in Darkness, supra note 59 at 90.
449 Section 24 of the Mental Health Services Act, SS 1984-
85-86, c M-13.1 [Sask Mental Health Services Act] sets out
the criteria for involuntary commitment: the patient must
be mentally disordered, a danger to himself or others, and “as
a result of the mental disorder the person is unable to fully
understand and to make an informed decision regarding
his need for treatment or care and supervision”. According
to Luther and Mela, this approach came about as a result
of a recommendation of the Saskatchewan Law Reform
Commission in 1985: “e Top Ten Issues in Law and
Psychiatry” (2006) 69 Sask L Rev 401.
450 Mental Health Care and Treatment Act, SNL 2006,
c M-9.1, s. 17(1)(b)(ii)(B) [NL Mental Health Care and
Treatment Act].
451 Involuntary Psychiatric Treatment Act, SNS 2005, c 42, s
17(e) [Involuntary Psychiatric Act].
452 Routledge, supra note 372 at 104.
453 Mental Health Act, RSA 2000, c M-13, s 29 [Alberta
Mental Health Act]
454 Mental Health Act, RSY 2002, c 150, s 23(2) [Yukon
Mental Health Act]; Gray, supra note 439 at 202.
455 Civil Code of Quebec, supra note 310, arts 11, 16; Mental
Health Act, RSNB 1973, c M-10.
s 8.11(3) [NB Mental Health Act]; Gray, supra note 439.
Robertson points out that in Alberta, statistics show that
most applications to the Review Panel to override the capable
involuntary patient’s refusal in the patient’s best interests are
successful, and as a result, at least in Alberta, the right to refuse
treatment is not actually protected in any meaningful way. See
Routledge, supra note 372, at 105.
456 Ontario HCCA, supra note 266, s 10(1).
457 Mental Health Act, CCSM c M110, s 29(1)(a) [Manitoba
Mental Health Act].
458 Mental Health Act, RSPEI 1988, c M-6.1, s 23(1) [PEI
Mental Health Act].
459 Mental Health Act, RSNWT (Nu) 1988, c M-10, s 21
[NWT Mental Health Act].
460 Routledge, supra note 372 at 105.
461 Law and Mind, supra note 310 at 102.
462 Gray, supra note 439 at 23–24.
Endnotes 277
463 Sask Mental Health Services Act, supra note 449, s 25(2);
NL Mental Health Care and Treatment Act, supra note 450, s
35(1); Gray, supra note 439 at 23–24.
464 NB Mental Health Act, supra note 455, s 8.11; Gray, supra
note 439 at 23–24.
465 An Act Respecting the Protection of Persons Whose Mental
State Presents a Danger to themselves or to Others, CQLR c
P-38.001, s 9.
466 Ontario HCCA, supra note 266 ss 1 and 10; Mental
Health Act, RSO 1990, c M.7, ss 1, 15 and 16 [Ontario Mental
Health Act].
467 Mental Health Act Alberta, supra note 454, s 28(3); Gray,
supra note 439 at 23–24.
468 Ontario HCCA, supra note 266, s 21(1); PEI Consent
to Treatment Act, supra note 310, s 13(1); Gray, supra note 439
at 23–24. In addition, under mental health legislation in PEI,
substitute decision makers can only consent to mental health
treatment where the treatment is medically necessary and the
benets outweigh the risks: PEI Mental Health Act, supra note
458, s 23 (9).
469 Care Consent Act, SY 2003, c 21, Schedule B, s 19; Yukon
Mental Health Act, supra note 454, s 21.
470 Manitoba Mental Health Act, supra note 457, s 28(4)(b);
Involuntary Psychiatric Act, supra note 451, s 39(b); Gray, supra
note 439 at 23–24.
471 e Best of Care 2, supra note 270 at 267.
472 Ibid.
473 MHA, supra note 55, ss 25 and 33; Seniors First
Advocate’s Manual, supra note 263 at 19.
474 Ibid and Best of Care 2, supra note 270 at 267. e
ombudsperson noted that the Supreme Court procedures were
rarely used as they were costly and time-consuming,
475 MHA, supra note 55, s 37.
476 Seniors First Advocate’s Manual, supra note 263 at 41.
477 HCCA, supra note 11, s 33.4 Section 33.4 was enacted by
2007-34-30 eective September 1, 2011 (BC Reg 14/2011).
478 Ibid, s 33.4(2).
479 Ibid, s 33.4(3).
480 Ibid, s 33.4(1).
481 Ibid, s 33.4(4); E (Mrs) v Eve, [1986] 2 SCR 388at para
77, 31 DLR (4th) 1: “Simply put, the discretion is to do what
is necessary for the protection of the person whose benet it is
exercised … [t]he discretion is to be exercised for the benet of
that person, not for that of others.” [E v Eve].
482 PPA, supra note 383, s 4.
483 Ibid, s 4(3)(b).
484 MHA, supra note 55, s 25.
485 Mental Health Act Reg, supra note 442, s 6(5).
486 Ibid, s 6(6).
487 MHA, supra note 55, s 25(1)(c).
488 Ibid, s 25(2.8).
489 Black’s Law Dictionary Online, 2
nd
ed. sub verbo “habeus
corpus”. e MHA does not aect the right of habeus corpus; see
MHA, supra note 55, 33(3).
490 Operating in Darkness, supra note 59, at 67.
491 R vSaskatchewan Wheat Pool, [1983] 1 SCR 205 at paras
226–28, [1983] SCJ No 14.
492 Ibid.
493 Ibid; MH Matthews, “Negligence and Breach of
Statutory Duty” (1984) 4:3 OJLS 429 at 431.
494 HCCA, supra note 11, s 33.
495 Some recent examples of such cases include: Kemp
v. Vancouver Coastal Health Authority Ltd, 2017 BCCA 229
at paras 104–105 [Kemp v VCH] (alleged a failure to obtain
express or implied informed consent for resuscitation eorts of
mother); Brodeur (Litigation guardian of ) v Provincial Health
Services Authority (c.o.b. British Columbia Women’s Hospital
and Health Center), 2016 BCSC 968 (alleged a failure to
obtain informed consent in terms of disclosing the material
risks of a vaginal delivery instead of elective caesarean section
delivery) [Brodeur]; Chen v Ross, 2014 BCSC 374, armed
on appeal, Chen v Ross, 2015 BCCA 250, (alleged a failure
by opthamologist to adequately disclose material risks of eye
surgery, thereby failing to obtain informed consent) [Chen v
Ross]; Ediger (Guardian ad litem of ) v Johnston, 2009 BCSC 386,
(alleged a failure to obtain informed consent of mother for use
of forceps during birth).
496 Chen v. Ross, supra note 495 at para 302. On appeal, the
doctor’s claim that consent was given by plainti was successful.
497 Kemp v VCH, supra note 495 at para 104-105.
498 Brodeur, supra note 495 at para 19.
499 Lue v St. Michael’s, supra note 303.
500 Arndt v Smith, [1997] 2 SCR 539 at para 6, 148
DLR (4th) 48.
501 Robertson - 20 Years, supra note 279 at 155.
502 See case examples at supra note 495.
503 Human Rights Code, supra note 68, s 8.
504 Ibid, s 21.
505 Ibid, s 8(1)(b).
506 Ibid, s 37.
507 Patient Care Quality Review Board Act, SB
2008, c 35, s 2.
508 External Complaint Regulation, BC Reg 305/2008, s 2(e)
[External Complaint Reg]: “(A) a licensed hospital within the
meaning ofsection 5of theHospital Act, (B) an institution,
operated for the reception and treatment of persons referred to
in paragraph (b) or (c) of the denition of “hospital” insection
1of theHospital Act, that has been designated as a hospital
under that Act, or (C) subject to paragraph (a), a licensed
community care facility.”
509 Provincial Services Health Authority, Patient Care
Quality Oce Resource Guide, (2012) at 5, online (pdf): <www.
phsa.ca/Documents/PCQO/PCQOResourceGuideMoHS_
PHSA2012.pdf>.
510 External Complaint Reg, supra note 508, s 2(e).
511 Ibid.
512 Such complaints should generally be directed to the
appropriate regulatory college.
513 External Complaint Reg, supra note 508, s 2(b).
514 Patient Care Quality Review Board Act, supra note 507,
s 15(12)(b).
515 Patient Care Quality Oce, Resource Guide (2012) at
8, online (pdf ): Provincial Services Health Authority <www.
phsa.ca/Documents/PCQO/PCQOResourceGuideMoHS_
PHSA2012.pdf>.
516 Patient Care Quality Review Boards, 2016/2017 Annual
Report, online (pdf ): Patient Care Quality Review Boards
<www.patientcarequalityreviewboard.ca/pdf/pcqrb-annual-
report-2017-18.pdf> [PCQRB Annual Report].
517 Ibid at 17.
518 Ibid at 27.
519 Ibid.
520 Ibid at 42.
278 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
521 Community Care and Assisted Living Act, SBC 2002, c 75,
s 5 [CCAL Act].
522 British Columbia, Ministry of Health at al, A
Guide to Community Care Facilities, at 8 (last visited
9 February 2019), online (pdf): Ministry of Health
<www2.gov.bc.ca/assets/gov/health/accessing-health-
care/nding-assisted-living-residential-care-facilities/
residential-care-facilities/a_guide_to_community_care_
facility_licensing_in_british_columbia_spring_2016_
update.pdf>.
523 Ibid at 54.
524 British Columbia, Ministry of Health, “Making
Concerns and Complaints”, online: Ministry of Health
<www2.gov.bc.ca/gov/content/health/accessing-health-care/
home-community-care/concerns-and-complaints>.
525 CCAL Act, supra note 521, ss 13 and 33.
526 British Columbia, Ministry of Health, “Making
a Complaint About an Assisted Living Facility”,
online: Ministry of Health <www2.gov.bc.ca/gov/
content/health/accessing-health-care/nding-assisted-
living-or-residential-care/assisted-living-residences/
making-a-complaint-about-an-assisted-living-residence>.
527 CCAL Act, supra note 521, s 27.
528 “About the Health Professions Review Board” (last
visited 16 August 2018), online: Health Professions Review
Board <www.hprb.gov.bc.ca/about.stm>.
529 e HPRB also has the power to review registration
decisions of the colleges: Health Professions Act, RSBC 1996, c
183, s 50.53 [HPA].
530 Ibid, s 50.
531 For example: “Decision No. 2015-HPA-182(a)(cataract
surgery)”, online (pdf ): Health Professions Review Board <www.
hprb.gov.bc.ca/decisions/>; “Decision No. 2015-HPA-076(a)
(cataract surgery)”, online (pdf): Health Professions Review
Board <www.hprb.gov.bc.ca/decisions/>.
532 For example: “HPRB Decision No. 2015-HPA-088(a)
(consent regarding a wart removal procedure)”, online (pdf ):
Health Professions Review Board <www.hprb.gov.bc.ca/
decisions/>.
533 Telephone interview of Dr. Heidi Oetter, Registrar,
College of Physicians and Surgeons of British Columbia, by
Rachel Kelly, Canadian Centre for Elder Law (22 June 2017).
534 “e Complainant v. the College of Physicians and
Surgeons of British Columbia, Decision No. 2016-HPA-048(a),
September 23, 2016”, online (pdf): Health Professions Review
Board <www.hprb.gov.bc.ca/decisions/>.
535 Complainant v. e College of Physicians and Surgeons of
British Columbia, 2016 CanLII 61757 (BC HPRB).
536 Ibid at para 35-38.
537 Ibid at para 83.
538 British Columbia, Ministry of Health, “Overview of
Complaint, Investigative and Referral Agencies in British
Columbia”, online (pdf): Ministry of Health <www2.gov.bc.ca/
gov/content/family-social-supports/seniors/about-seniorsbc/
seniors-action-plan/concerns-and-complaints>.
539 “What We Investigate” (last visited 17 August 2018),
online: Oce of the Ombudsperson <www.bcombudsperson.ca/
complaints/what-we-investigate>.
540 e Best of Care 2, supra note 270.
541 Legal Services Society Act, SBC 2002, c 30; “Legal Aid
Services” (last visited 17 August 2018) online: Legal Aid Services
Society <legalaid.bc.ca/legal_aid/>.
542 “2016/17 Annual Service Plan Report” at 6, online
(pdf): Legal Services Society <lss.bc.ca/about/annualReports.
php> [2016/17 Annual Service Plan Report].
543 “Advice” (last visited 17 August 2018), online: Legal
Services Society <www.lss.bc.ca/legal_aid/legalAdvice.php>;
2016/17 Annual Service Plan Report, supra note 542 at 6: Legal
aid for criminal matters may also be available to individuals who
are unable to represent themselves because of a disability.
544 British Columbia Law Institute, A Comparative Analysis
of Adult Guardianship Laws in BC, New Zealand and Ontario,
BCLI Report 46 (2006) at 59 [BCLI AGA Paper].
545 “Immigration problems” (last visited 26 November
2018), online: Legal Services Society <lss.bc.ca/legal_aid/
immigrationProblems.php>.
546 Note, there are numerous other issues which impact the
fundamental rights of older people for which legal aid funding
is not provided. ese include advice and representation in
respect of detention pursuant to the Mental Health Act and
related applications and Adult Guardianship Act measures,
including support and assistance orders and emergency
interventions against an adult’s wishes under Part 3. However,
while we recognize these topics as presenting important access
to justice issues which require addressing, they fall outside the
scope of this project.
547 BCLI CL Capacity Report, supra note 330 at 160–63.
548 Ibid at 162.
549 Ibid at 160 citing Bank of Nova Scotia v. Kelly (1973), 41
DLR (3d) 273 at 275.
550 Ibid at 160.
551 Law Society of BC, Code of Professional Conduct for BC -
annotated, Vancouver: Law Society of BC, 2013), Rule 3.2-9
552 Ibid at Commentary Note 1.
553 RAA, supra note 360, s 8(1)(a).
554 BCLI CL Capacity Report, supra note 330 at 172–73.
555 Barbara Buchanan, “Acting for a client with dementia”,
online: Law Society of BC <www.lawsociety.bc.ca/Website/
media/Shared/docs/bulletin/BB_2015-01-Spring_Part4.pdf>
at 15-16 [Buchanan].
556 BCLI CL Capacity Report, supra note 330 at 173
(Recommendation 27).
557 Health Statutes Amendment Act, supra note 61, cl 26.1.
558 Ibid.
559 H Archibald Kaiser, “Restraint and Seclusion in
Canadian Mental Health Facilities: Assessing the Prospects for
Improved Access to Justice” (2001) 19 Windsor YB Access Just
391 at 403 [Kaiser].
560 British Columbia Law Institute, A Bill of Rights
for Assisted Living Residents, Memorandum No. 16 (2011)
[unpublished, archived at British Columbia Law Institute].
561 Wellesley Hospital v Lawson, [1978] 1 SCR 893 at 896,
76 DLR (3d) 688, Laskin CJ (“It was not doubted by counsel
for the parties that at common law a hospital, especially one
providing treatment for mentallyill persons, would be under
a common law liability if by reason of its failure to provide
adequate control and supervision injury occurred to third
persons by reason of the conduct or behaviour of a patient.”).
562 Conway v Fleming (1999), 43 OR (3d) 92, 173 DLR
(4th) 372 (Div Ct). R. v Webers (1999), 95 CCC (3d) 334, 25
WCB (2d) 305 (Ont Gen Div) [Webers cited to CCC]; R v
McKenzie, 2004 ABPC 239; R v Labrèche, 2011 ONSC 2828.
563 See Mullins v. Levy, 2009 BCCA 6 at paras 147-50.
564 Webers, supra note 562 at 349.
Endnotes 279
565 Verdun-Jones, supra note 281 at 520-21.
566 RC Reg, supra note 14,
ss 73-75.
567 CCAL Act, supra note 521.
568 Hospital Act, RSBC 1996, c 200 [Hospital Act].
569 Telephone interview of Ministry of Health sta
by Kathleen Cunningham, Krista James and Rachel Kelly
(2 May 2017).
570 RC Reg, supra note 14, s 1.
571 Ibid, ss 74(1)(b)(i)-(ii).
572 Ibid, s 1.
573 Ibid.
574 Ibid, s 74(1)(b).
575 Ibid , s 74(1)(b)(ii).
576 HCCA, supra note 11, s 16.
577 RC Reg, supra note 14, s 74(a) (emphasis added).
578 Ibid, s 1.
579 Ibid, s 74(3).
580 Ibid, Schedule D, s 1.
581 Ibid, s 77(2).
582 Ibid, s 75(3).
583 Ibid, s 73(2); It should be noted that the Ministry of
Health has recommended, upon its review of anti-psychotic
medications in long term-care, a review of s 73(2) to determine
whether it provides appropriate protections: Best of Care 2, supra
note 270 at 288.
584 RC Reg, supra note 14, ss 74(1) and 75(2).
585 Ibid, s 84; see also ss 81 (3)(a)(iii) and 73(2)(c).
586 Ibid, s 75(1).
587 Black’s Law Dictionary, 10th ed, sub verbo
“Consent, noun”.
588 Ibid, sub verbo “Agreement”.
589 R v Conception, 2014 SCC 60 at para 88.
590 HCCA, supra note 11, s 9(1).
591 RC Re, supra note 14, s 85(2)(i).
592 Ibid, s 88.
593 Ibid, s 77(2)(c). In addition to a medical health ocer,
the “parent, or representative, or contact person, of the person in
care” and the medical or nurse practitioner responsible for the
person in care must also be notied if the person is involved in a
reportable incident.
594 CCAL Act, supra note 521, s 4.
595 RC Reg, supra note 14, s 1.
596 Health Statutes Amendment Act, supra note 61, cl 22.
597 Ontario HCCA, supra note 266, s 7; Yukon Care Consent
Act, supra note 310, s 62; PEI Consent to Treatment Act, supra
note 310, s 2(2).
598 SO 2007, c 8, s 36 [LTCH Act].
599 Kaiser, supra note 559 at 405.
600 Manitoba Mental Health Act, supra note 457; ss 5(2), 9(1)
(b), 19 and 21(4); PEI Mental Health Act, supra note 458, ss 6(3)
(b), 15 and 16(3); NWT Mental Health Act, supra note 459, ss 18,
23, 23.3(7) and 26(2); Alberta Mental Health Act, RSA 2000, c
M-13, ss7(1) and 8(3) (Alberta uses the term ‘control’); Ontario
Mental Health Act, supra note 466, ss 20(4) and 32(1); Yukon
Mental Health Act, supra note 454 s 18.
601 Manitoba Mental Health Act, supra note 457, s 1.
602 An Act respecting health services and social services, RSQ,
c S-4.2, as amended by s 49, An Act respecting the protection of
persons whose mental state presents a danger to themselves or to
others, SQ 1997, c 75, s 118.1: “Force, isolation, mechanical
means or chemicals may not be used to place a person under
control in an installation maintained by an institution except
to prevent the person from inicting harm upon himself or
others. e use of such means must be minimal and resorted
to only exceptionally, and must be appropriate having regard
to the person’s physical and mental state.”; see also Kaiser,
supra note 559.
603 NB Mental Health Act, supra note 455, s 7.1(4) (An
“examination certicate…is sucient authority ... for the
attending psychiatrist, without consent ... to administer
such restraint as, in the attending psychiatrist’s opinion, is
necessary.”)
604 Ibid.
605 MHA, supra note 55, ss 31–32; Kaiser, supra
note 559 at 404.
606 NL Mental Health Act, supra note 408, s 3 simply
provides that one of the purposes of the Act is “to provide for
the apprehension, detention, custody, restraint, observation,
assessment, treatment and care and supervision of a person with
a mental disorder by means that are the least restrictive and
intrusive for the achievement of the purpose[s] [of the Act].”
607 See for example, Homes for Special Care Regulations, NS
Reg 127/77, ss 5A(1) and 7; Facility Designation Regulations,
RRS c R-8.2 Reg 6, s 17(2) [SK Facility Designation
Regulations] and e Provincial Health Authority Act, SS 2017, c
P-30.3, s 9-5(1)( ).
608 LTCH Act, supra note 598, s 29.
609 Long Term Care Homes Regulation, O Reg 79/10, s
109 [LTCH Reg].
610 LTCH Act, supra note 598, s 30(3).
611 Ibid, s 30(4).
612 Ibid, s 30(5).
613 Ibid, s 30(6).
614 Ibid, ss 30 and 36.
615 Ibid, s 30(1).
616 Ibid, s 31(2).
617 Ibid, s 36, 110(2); LTCH Reg, supra note 609, s137(1).
618 LTCH Act, supra note 598, s 36.
619 RC Reg, supra note 12, s 74(1)(b).
620 LTCH Reg, supra note 609, s 137(2).
621 LTCH Act, supra note 598, s 110(7)
622 Patient Restraint Minimization Act, 2001, SO 2001, c
16 [PRM Act].
623 “Health Law – Bill 85, Patients Restraint
Minimization Act,”(11 July 2001), online: Cassels Brock
LLP <www.casselsbrock.com/CBNewsletter/Health_
Law___BILL_85____i_Patient_Restraints_Minimization_
Act__2001__i___July_11__2001> [Cassels Brock LLP].
624 PRM Act, supra note 562, ss 5-6.
625 Ibid, s 5.
626 Ibid, s 6.
627 Ibid, s 6(2).
628 Cassels Brock LLP, supra note 623.
629 Monik Renault, “e Use of Control Measures”
(2008), online (pdf ): Between You and I <www.vigisante.
com/Data/Bulletins/EntreVousEtMoi/Entrevousetmoi_
Num24_ang.pdf>.
630 Alberta, Ministry of Health, “Continuing Care Health
Service Standards” ( January 2016), online (pdf): Ministry of
Health <www.health.alberta.ca/documents/Continuing-Care-
Standards-2016.pdf> [CCHSS]; Note, minimum standards
with respect to the accommodation provided in long term
care, which also apply to nursing homes are contained in
the Ministry of Health, “Long-Term Care Accommodation
280 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
Standards & Checklist”, online: <www.health.alberta.ca/
documents/CC-Long-Term-Care-Standards-2010.pdf>.
631 Nursing Homes General Regulation, Alta Reg 232/1985.
632 RSA 2000, c N-7.
633 RSA 2000, c R-10.
634 CCHSS, supra note 630 at 3; Nursing Homes General
Regulation, Alta Reg 232/1985, s 4(2); Regional Health
Authorities Act, RSA 2000, c R-10.
635 CCHSS, supra note 630 at 7.
636 Ibid at 10.
637 Ibid at 33 (para 16.1(g)).
638 Ibid at 10.
639 Ibid at 9.
640 Ibid at 33 (para 16.1(g)(i)).
641 Ibid at 33 (para 16.1).
642 Ibid at 33 (para 16.3).
643 Nova Scotia Health and Wellness, “Long Term Care
Program Requirements: Nursing Homes & Residential Care
Facilities” (15 March 2016) at 5, online (pdf ): Nova Scotia
Health and Wellness <novascotia.ca/dhw/ccs/policies/Long-
Term-Care-Facility-Program-Requirements.pdf> [Nova Scotia
Health and Wellness].
644 Ibid at 12.
645 Ibid at chapter 8.3 para 10.
646 SK Facility Designation Regulations, supra note 607,
s 17(2)-(3); “Program Guidelines for Special-care Homes”
(last modied May 2016) at 1 of Title 1.1, online (pdf ):
Government of Saskatchewan <www.publications.gov.sk.ca/
details.cfm?p=85127> [Sask Program Guidelines for Special-
care Homes].
647 Ibid, at chapter 15.10(a) & (c).
648 Ibid at chapter 15.10(d).
649 Community Care Facilities and Nursing Homes Act,
RSPEI 1988, c C-13; PEI Reg EC391/84.
650 Prince Edward Island Department of Health,
“Operational and Care Service Standards for Community
Care Facilities” (23 March 2009, revised 2016), online: Prince
Edward Island Deparment of Health <www.princeedwardisland.
ca/en/publication/operational-and-care-service-standards-
community-care-facilities-revised-2016> [CCF Standards].
651 Prince Edward Island Deparment of Health,
“Operational and Care Service Standards for Private Nursing
Homes”, (last revised November 2016), online (pdf): Prince
Edward Island Health and Wellness <www.princeedwardisland.
ca/sites/default/les/publications/ocsspnh11h.pdf> [Nursing
Home Standards].
652 Ibid at 4.4.26.
653 Ibid at 4.4.49.
654 Ibid.
655 PEI Consent to Treatment Act, supra note 310, s 2(2).
656 is part of the Washington Administrative Code 388-97
[WAC] mirrors the language of the federal regulation of
restraint in Code of Federal Regulations, 42 CFR § 483.10 and
483.12 [CFR].
657 WAC, supra note 656, 388-97-0620 (1).
658 Revised Code of Washington, 7.70.020 (1) [RCW].
659 Ibid, 7.70.020 (2)–(3).
660 In 1975, Washington enacted Chapter 7.70 of the
Revised Code of Washington, “Actions for Injuries Resulting
from Health Care.” is Chapter makes a “health care provider”
liable in an action for damages where injury has resulted from
health care to which the patient or their representative did
not consent. However, courts have refused to interpret this
provision as placing equal informed consent obligations on
hospitals and health care facilities, instead conrming that
primary responsibility for obtaining informed consent remains
on the individual health care professional. Despite the court’s
interpretation of this provision, “there are regulatory and
accreditation requirements which demand the involvement of
hospitals and other health care facilities in the consent process”
contained in the Washington State Health Law Manual: see
Barbara Shickich & Sarah Joye, Washington State Health Law
Manual Chapter 2A: Consent to Healthcare – General Rules,
4th ed by Heath Fox at 2A-4, online (pdf ): Washington State
Hospital Association <www.wsha.org/our-members/resources-
for-hospitals/washington-health-law-manual-third-edition/>
[Washington Health Law Manual] and Howell v. Spokane &
Inland Empire Blood Bank, 114 Wn.2d 42, 55, 785 P.2d 815
(1990) (citing Alexander v. Gonser, 42 Wn. App. 234, 711 P.2d
347 (1985), rev. denied, 105 Wn.2d 1017 (1986)).
661 WAC, supra note 656, 388-97-0260 (1).
662 Ibid, 388-97-0260 (3)(b).
663 Ibid, 388-97-0260 (3)(b).
664 Ibid, 246-320-141.
665 Washington Health Law Manual, supra
note 660 at 2A-4
666 Ibid at 2A-5 citing Joint Commission Hospital
Accreditation Standards 2016, RI.01.03.01.
667 Ibid at 2A-5.
668 WAC, supra note 656, 388-97-0300 (3).
669 CFR, supra note 656, tit 42, § 482.13(b)(2); Washington
Health Law Manual, supra note 660 at 2A-6.
670 CFR, supra note 656, tit 42, § 482.24(c)(4)(v);
Washington Health Law Manual, supra note 660 at 2A-6.
671 Washington State Health Care Authority, “Shared
decision-making” (last visited 11 February 2019), online:
Washington State Health Care Authority <www.hca.wa.gov/
about-hca/shared-decision-making-putting-patients-values-
forefront-health-care>.
672 Washington State Health Care Authority, “Patient
Decision Aids” (last visited 11 February 2019), online:
Washington State Health Care Authority <www.hca.wa.gov/
about-hca/healthier-washington/patient-decision-aids-pdas>.
673 California Hospital Consent Manual, p. 1.1, online
(pdf): California Hospital Association <www.calhospital.
org/sites/main/les/le-attachments/consent2016_
webpreview_0.pdf>.
674 California Code of Regulations, 22 CCR tit 22, §
72052 [CCR].
675 CCR, ibid, 22, § 72528(c).
676 CFR, supra note 656, tit 42, § 482.24(c)(4)(v).
677 CCR, supra note 674 tit 22, § 72103.
678 California Health and Safety Code, §1418.9 [Cal
HSC]; For the purposes of this section, resident is dened as
“a patient of a skilled nursing facility who has the capacity to
consent to make decisions concerning his or her health care,
including medications”: §1418.9 (c)(1).
679 CCR, supra note 674, § 72527 (2017), s (a)(5).
680 Ibid, § 72527 (2017); Cal HSC, supra note 678, §
1599.1 (2017).
681 CCR, supra note 674, § 72527 (2017), s (a)(3)-(5).
682 Ibid, § 72528 (2017), s (b)(6).
683 42 USC § 1395cc(f ) (Medicare) and 1396a(w)
(Medicaid) (1994)) [PSDA].
Endnotes 281
684 Kim Dayton, “Standards for Health Care Decision-
Making: Legal and Practical considerations” (2012) 3 Utah L
Rev 1329 at 1338.
685 Kaiser, supra note 559 at 392.
686 “Practice Standards: Restraints” (2017) at 4, online
(pdf): College of Nurses of Ontario <www.cno.org/en/learn-
about-standards-guidelines/educational-tools/learning-
modules/restraints/> [Practice Standards: Restraints].
687 LL Emanuel et al, eds, “e Patient Safety
Education Program—Canada Curriculum, Module
13d: Mental Health Care: Seclusion and Restraint:
When All Else Fails”, (2013) online (pdf): Canadian
Patient Safety Institute <www.patientsafetyinstitute.
ca/en/education/PatientSafetyEducationProgram/
PatientSafetyEducationCurriculum/Documents/Module%20
13d%20Seclusion%20and%20Restraint.pdf> [Emanuel et al] .
688 “Position Statement on the Use of Restraints in Client
Care Settings” (2009) at 4, online (pdf ): College and Association
of Registered Nurses of Alberta <www.nurses.ab.ca/content/dam/
carna/pdfs/DocumentList/PositionStatements/Restraints_
ClientCare_Jun2009.pdf> [Position Statement on the Use of
Restraints].
689 “Restraint in the Care of People in Residential Aged
Care Facilities – 2015” (24 March 2015), online: Australian
Medical Association <ama.com.au/position-statement/
restraint-care-people-residential-aged-care-facilities-2015>.
690 Government of Australia, Department of Health &
Ageing,Decision Making Tool: Supporting a Restraint Free
Environment in Residential Aged Care(Canberra: Dept of
Health & Ageing, 2012) at 24 [Commonwealth Decision
Making Tool].
691 Ibid at 24.
692 South Australian Oce of the Public Advocate,
Guardian Consent for Restrictive Practices in Residential Aged
Care Settings (SA: OPA, 10 March 2015) at 4[SA Oce of the
Public Advocate].
693 “e Use of Restraints in Residential Care Facilities:
Community Care Facilities Licensing Program” (August 2016),
online (pdf): Island Health <www.islandhealth.ca/sites/default/
les/2018-12/restraints-use-residential-care.pdf> [e Use of
Restraints in Residential Care Facilities].
694 LTCH Act, supra note 598, s 31.
695 Ontario HCCA, supra note 266, s 2.
696 M. (Re), 2008 CanLII 42405 (ON CCB).
697 CCHSS, supra note 630 at 10.
698 Austl, New South Wales Department of Ageing,
Disability and Home Care, “Behaviour Support: Policy
and Practice Manual: Guidelines for the Provision
of Behaviour Support Services for People with an
Intellectual Disability, Part 1” ( January 2009) at 28,
online: National Library of Australia <trove.nla.gov.au/
work/161582057?selectedversion=NBD48489150>;
699 Ibid.
700 National Disability Insurance Scheme (Restrictive Practices
and Behaviour Support) Rules 2018, (Austl).
701 Austl, New South Wales, Central Restrictive Practices
Team, “NSW Restrictive Practices Authorisation Procedural
Guide” ( June 2018) at 7, online (pdf ): Government of
New South Wales, Family and Community Services <www.
facs.nsw.gov.au/__data/assets/pdf_le/0003/593319/
RPA-Procedural-Guide.pdf>.
702 Nick O’Neill, Carmelle Peisah, Capacity and the Law
(Sydney: Sydney University Press Law Books, 2011), ch 12.8.1
citing BCB,[2002] WAGAB 1;Re BCB, Application for a
Guardianship Order,[2002] SR (WA) 338 [BCB Guardianship].
703 BCB Guardianship, supra note 702.
704 Ibid.
705 J P, [2008] WASAT 3 (8 January 2008), para 66.
706 Ibid at paras 74–75; O’Neill, supra note 699 at
paras 7.3–5.
707 ADP,[2005] WASAT 131, at paras 27–28; O’Neill, supra
note 699 at para 12.8.1.
708 Seniors Advocate, “Seniors Housing in BC:
Aordable, Appropriate, Available” (2015) at 11,
online: <www.seniorsadvocatebc.ca/osa-reports/
seniors-housing-in-b-c-aordable-appropriate-available/>
709 Continuing Care Act, RSBC 1996, c 70, s 3
[Continuing Care Act].
710 Ibid.
711 Continuing Care Programs Regulation, BC Reg 146/95
[Continuing Care Programs Regulation].
712 British Columbia, Ministry of Health, “Home Support”
(last visited 17 August 2018), online: Ministry of Health
<www2.gov.bc.ca/gov/content/health/accessing-health-care/
home-community-care/care-options-and-cost/home-support>.
713 British Columbia, Ministry of Health, “Care
Options and Cost” (last visited 17 August 2018), online:
Ministry of Health <www2.gov.bc.ca/gov/content/
health/accessing-health-care/home-community-care/
care-options-and-cost>.
714 Ibid.
715 British Columbia, Ministry of Health, “Assisted Living”
(last visited 17 August 2018), online: Ministry of Health
<www2.gov.bc.ca/gov/content/health/accessing-health-care/
home-community-care/care-options-and-cost/assisted-living>.
716 CCAL Act, supra note 521.
717 Community Care and Assisted Living Regulation, BC Reg
217/2004 [CCAL Reg].
718 Assisted Living Regulation, BC Reg 218/2004.
719 CCAL Act, supra note 521, s 26(3).
720 RC Reg, supra note 14, s 2(2)(c).
721 CCAL Act, supra note 521.
722 CCAL Reg, supra note 714.
723 RC Reg, supra note 14. Other pieces of legislation
relevant to the care of seniors in residential care facilities
include the Adult Guardianship Act, supra note 82, Continuing
Care Act, RSBC 1996, c 6, HCCA, supra note 11, Power of
Attorney Act, RSBC 1996, c 370. and the Patient Care Quality
Review Board Act, SBC 2008, c 35.
724 British Columbia, Ministry of Health, “Long Term
Residential Care” (last visited 17 August 2018), online: Ministry
of Health <www2.gov.bc.ca/gov/content/health/accessing-
health-care/home-community-care/care-options-and-cost/
long-term-residential-care>.
725 A single list of services is prescribed under s 34(4) of the
CCAL Act for both residential care and assisted living.
726 CCAL Reg, supra note 714, s 2.
727 British Columbia, Ministry of Health, “Short Term
Residential Care” (last visited 17 August 2018), online: Ministry
of Health <www2.gov.bc.ca/gov/content/health/accessing-
health-care/home-community-care/care-options-and-cost/
short-term-residential-care>.
728 Hospital Act, supra note 568, Part 2, s 5(1).
282 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
729 Ibid, s 1(c) denes hospitals as “a non-prot institution
that has been designated as a hospital by the Minister of
Health Services and is operated primarily for the reception
and treatment of persons… requiring extended care at a higher
level than that generally provided in a private hospital licensed
under Part2.”
730 Seniors First Advocate’s Manual, supra note 263 at 16.
731 Seniors’ First Advocate’s Manual, ibid, at 16; Hospital
Act, supra note 568; Hospital Act Regulation, BC Reg
121/97; Patients’ Bill of Rights Regulation, BC Reg 37/2010
[Patients’ Bill Reg].
732 BC Ombudsperson, “Update on Status of
Recommendations, Best of Care: Getting it Right for
Seniors in British Columbia (Part 2)”, (June 2015), online:
BC Ombudsperson <bcombudsperson.ca/documents/best-
care-getting-it-right-seniors-british-columbia-part-2> [Best of
Care 2015 Update].
733 Best of Care 2 supra note 270 at 22.
734 Ibid at 206-212 for Ombudsperson’s discussion of the
dierences between facilities governed by the Hospital Act and
those governed by the CCAL Act.
735 Hospital Act, supra note 568, ss 4(3)–(4).
736 Patients’ Bill Reg, supra note 728, s 2(2).
737 Best of Care 2015 Update, supra note 729, at 10 re Fraser
Health, at 12 re Interior Health p 12, at 13 re Island Health p
13, and at 11 re Northern Health.
738 Ruth Lavergne, “Regional Variation in Alternate Level
of Care (ALC) Service Use in British Columbia Hospitals:
An Opportunity for Intervention?” (2015) at 1, online (pdf):
Institute for Health System Transformation & Sustainability
<ihsts.ca/wp-content/uploads/2016/06/BC-ALC-Report-
Lavergne-2015.pdf> [Lavergne].
739 Ibid.
740 Jason Sutherland & R. Truord Crump, “Exploring
alternative level of care (ALC) and the role of funding policies:
An evolving evidence base for Canada” (2011) at 2, online:
Canadian Health Services Research Foundation <www.cfhi-fcass.
ca/SearchResultsNews/11-09-20/29f5b70f-e94f-4986-9455-
231888e40f4a.aspx>.Alternative Level of Care: Canada’s
Hospital Beds, the Evidence and Options” (2013) 9:1 Healthc
Policy 26 at 27, online: <www.ncbi.nlm.nih.gov/pmc/articles/
PMC3999549/>.
741 Ibid.
742 British Columbia, Oce of the Seniors Advocate,
“Monitoring Senior’s Services” (2017) at 33, online (pdf):
Oce of the Senior’s Advocate BC <www.seniorsadvocatebc.ca/
app/uploads/sites/4/2017/12/MonitoringReport2017.pdf>
[Senior’s Advocate Report].
743 Ibid.
744 Barry Clarke & Karen Pyra, “From Care by Default
to Care by Design: Improving Primary Care of the Elderly in
Capital Health, Report of Capital Health’s Primary Care of
the Elderly Project” (2006), online (pdf): Nova Scotia Health
Authority <medicine.dal.ca/content/dam/dalhousie/images/
faculty/medicine/departments/department-sites/family/DFM_
research_carebydesign_cdhaproject.pdf>.
745 British Columbia, Ministry of Health, “Primary and
Community Care in BC: A Strategic Policy Framework”,
(2015) at 80, online (pdf ): <www.health.gov.bc.ca/library/
publications/year/2015/primary-and-community-care-policy-
paper.pdf> [BC Policy Framework].
746 Ibid.
747 British Columbia, Ministry of Health, “Home Support”
(last visited 17 August 2018), online: Ministry of Health
<www2.gov.bc.ca/gov/content/health/accessing-health-care/
home-community-care/care-options-and-cost/home-support>.
748 British Columbia, Ministry of Health, “Community
Nursing” (last visited 17 August 2018), online: Ministry of
Health <www2.gov.bc.ca/gov/content/health/accessing-
health-care/home-community-care/care-options-and-cost/
community-nursing>; BC College of Nursing Professionals,
“Types of Nurses: Nurse Practitioner” (last visited 4 October
2018), online: BC College of Nursing Professionals <www.bccnp.
ca/becoming_a_nurse/Pages/Types_of_nurses.aspx> [NP
Streams of Practice].
749 Seniors First Advocate’s Manual, supra note 263 at 9-10.
750 Ibid.
751 Paul R Katz et al, “Physician Practice in the Nursing
Home: Exploring New Models” (2011) 1:1 Canadian Geriatrics
Society Journal of CME, 23 at 24, online (pdf ): Canadian
Geriatrics Society <canadiangeriatrics.ca/blog-post/cme-journal-
vol-1-issue-1-2011/> [Katz].
752 Seniors First Advocacy Manual, supra note 263 at
9 (Table 2).
753 Ibid; RC Reg, supra note 12, s 54.
754 Seniors First Advocacy Manual, supra note 263 at 13.
755 HPA, supra note 326, s 12.
756 Ibid, s 16(1).
757 Ibid, s 16(2)(a), (d), (g).
758 Lesley Charles et al, “Care of the Elderly Program at
the University of Alberta: Meeting the Challenges of Treating
the Aging Population” (2014)60:11 CFP e 521 at2523, online
(pdf): Canadian Family Physician <www.cfp.ca/content/
cfp/60/11/e521.full.pdf>.
759 Vancouver Division of Family Practice Residential
Care Committee, “Residential Care Baseline Research Project”
(2014), at 2, online (pdf ): Divisions of Family Practice <www.
divisionsbc.ca/node/377>
760 “Role of the Attending Physician in the Nursing
Home” (1 March 2003), online: Society for Post-Acute
and Long-Term Care Medicine <www.paltc.org/amda-
white-papers-and-resolution-position-statements/
role-attending-physician-nursing-home>.
761 Geriatric Medicine Prole, supra note 8 at 3–5.
762 Ibid at 3.
763 Ibid.
764 “Denition of a Geriatric Psychiatrist” (last visited 18
August 2018), online: Canadian Academy of Geriatric Psychiatry
<www.cagp.ca/page-1257712>.
765 Ibid.
766 Detailed legislative guidance with respect to consent of
minors under the Infants Act and involuntary admissions under
the Mental Health Act is available: See College of Physicians
and Surgeons, Practice Standards and Professional Guidelines,
online: <www.cpsbc.ca/for-physicians/standards-guidelines>.
767 Canadian Medical Association, Code of Ethics and
Professionalism (rev 2014), online (pdf ): Canadian Medical
Association <policybase.cma.ca/dbtw-wpd/Policypdf/
PD19-03.pdf>.
768 Kenneth G Evans, Consent: A Guide for Canadian
physicians (Canadian Medical Protective Association:
2006), online: Canadian Medical Protective Association
<www.cmpa-acpm.ca/en/advice-publications/handbooks/
consent-a-guide-for-canadian-physicians>.
Endnotes 283
769 “Guideline: Prescribing Practices, Countersigning
Prescriptions and Internet Prescribing” (last modied October
2009), online (pdf ): College of Physicians and Surgeons of
BC <www.cpsbc.ca/les/pdf/PSG-Prescribing-Practices-
Countersigning-Prescriptions-Internet-Prescribing.pdf>.
770 College of Physicians and Surgeons of BC, “Bylaws”
(last modied 13 March 2018) at 3-5(1), online (pdf ): College
of Physicians and Surgeons of British Columbia <www.cpsbc.ca/
college-bylaws> [College of Physicians and Surgeons Bylaws].
771 “Continuing Professional Development” (last visited 18
August 2018), online: College of Physicians and Surgeons of BC
<www.cpsbc.ca/for-physicians/registration-licensing/cpd>.
772 “CPD Activities you can record” (last visited 18
August 2018), online: Royal College of Physicians and Surgeons
of Canada <www.royalcollege.ca/rcsite/cpd/moc-program/
cpd-activities-can-record-e>.
773 Pursuant to Bill 10, Health Professions Amendment Act,
2017, 2nd Sess, 41st Parl, BC, 2017 (assented to 2 November
2017.) Legislation amending the Health Professions Act
to enable this amalgamation was given Royal Assent on
November 2, 2017.
774 Nurses (Registered) and Nurse Practitioners Regulation,
BC Reg 284/200, s 6(1) [Nurses Regulation].
775 Ibid, s 6(1)(k).
776 Nurses Regulation, supra note 774; BC College of
Nursing Professionals, “Scope of Practice for Registered Nurses”
(2018), online: BC College of Nursing Professionals <www.bccnp.
ca/Standards/RN_NP/Pages/Default.aspx> [Scope of Practice
for Registered Nurses].
777 “Registered Nurse Roles in Long Term Care” (2013) at
5, online (pdf ): Association of Registered Nurses in Newfoundland
and Labrador <www.arnnl.ca/document-type/position-
statements> [Registered Nurse Roles].
778 Ibid.
779 “In it for the Long Term” ( June 2011), online: Canadian
Nurse <canadian-nurse.com/en/articles/issues/2011/june-2011/
in-it-for-the-long-term> [Canadian Nurse].
780 Registered Nurse Roles, supra note 777 at 5.
781 Canadian Nurse, supra note 779.
782 “Scope of Practice for Nurse Practitioners” (2018) at
6, online: BC College of Nursing Professionals <www.bccnp.ca/
Standards/RN_NP/Pages/Default.aspx> [Scope of Practice for
Nurse Practitioners].
783 “NP Streams of Practice,” supra note 748.
784 Email from Tansey Ramanzin, BC College of Nursing
Professionals to Rachel Kelly, Canadian Centre for Elder Law
(26 July 2017).
785 Scope of Practice for Nurse Practitioners, supra
note 782 at 5.
786 Schedule 1 drugs require a prescription and must be
provided to the public by a pharmacist following the diagnosis
and professional intervention of a ‘practitioner’ (with exceptions
that are not relevant to this project). Schedule 1A drugs,
referred to a Triplicate/Duplicate Prescription Program, are
those drugs which may be sold by a pharmacist to a practitioner
or on the prescription of a practitioner in accordance with
Bylaw 5(31)(6) of the bylaws to thePharmacists, Pharmacy
Operations and Drug Scheduling Act. See Drug Schedules
Regulation, BC Reg 9/98.
787 Nurses Regulation, supra note 774, s 9(1).
788 Scope of Practice for Nurse Practitioners, supra
note 780 at 6.
789 Nurses Regulation, supra note 774, s 8.
790 “Certied Practice – Overview” (last visited 4 October
2018), online: BC College of Nursing Professionals <www.bccnp.
ca/Standards/RN_NP/CertiedPractice/Overview/Pages/
Default.aspx>.
791 Ibid; Nurses Regulation, supra note 774, s 8.
792 “Practice Standard: Medication Administration”
(last visited 4 October 2018), online: BC College of
Nursing Professionals <www.bccnp.ca/Standards/RN_NP/
PracticeStandards/Pages/Default.aspx> [Medical
Administration Practice Standard]; “Practice Standard:
Dispensing Medications” (last visited 4 October 2018), online:
BC College of Nursing Professionals <www.bccnp.ca/Standards/
RN_NP/PracticeStandards/Pages/Default.aspx>.
793 Ibid.
794 “Practice Standard: Consent” (last visited 2 October
2018), online: BC College of Nursing Professionals <www.bccnp.
ca/Standards/RN_NP/PracticeStandards/Pages/Default.aspx>
[Consent Practice Standard].
795 Ibid. “Employers are responsible for providing necessary
systems and supports to enable nurses to meet consent
requirements.”
796 Ibid, Principle 3.
797 Ibid, Principle 4.
798 Best of Care 2, supra note 270 at 291.
799 Consent Practice Standard, supra note 794, Principle 4.
800 Consent Practice Standard, supra note 794, Principle 12.
801 BC College of Nursing Professionals, “Standard 4:
Ethical Practice” (last visited 2 October 2018), online: BC
College of Nursing Professionals <www.bccnp.ca/Standards/
RN_NP/ProfessionalStandards/Pages/EthicalPractice.aspx>.
802 Ibid.
803 Practical Nursing, “8 Roles of the LPN”, online:
Practical Nursing <www.practicalnursing.org/8-roles-of-lpn>.
[Practical Nursing].
804 Ibid.
805 Nurses (Licensed Practical) Regulation, BC Reg
224/2015 [LPN Regulation]; See also “Scope of Practice”
(last modied 9 February 2018) at 9-26, online: BC College of
Nursing Professionals <www.bccnp.ca/Standards/LPN/LPN_
ScopePractice/Pages/Default.aspx> [LPN Scope of Practice].
806 LPN Regulation, supra note 805, ss 6(1)(m), 7(1)(h);
Medical Administration Practice Standard, supra note 790;
LPN Scope of Practice, supra note 805 at 23 (“LPNs dispense
medications with a client-specic order from an authorized
health professional”).
807 e authority of an LPN with respect to dispensing
or administering medications ordered on a PRN basis are not
distinguished from the administration of medications generally
in the Regulations or Practice Standards.
808 “Practice Standard: Consent” (last modied June 2016)
at 2, online (pdf ): BC College of Nursing Professionals <www.
bccnp.ca/Standards/LPN/PracticeStandards/Pages/Default.
aspx> [Consent Practice Standard Licensed Practical Nurses].
809 Ibid at 1.
810 Ibid at 2.
811 Ibid.
812 “Professional Standards for Licensed Practical Nurses”
(last modied February 2017) at 9, online (pdf): BC College
of Nursing Professionals <www.bccnp.ca/Standards/LPN/
ProfessionalStandards/Pages/Default.aspx > [Professional
Standards LPN].
284 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
813 Consent Practice Standard Licensed Practical Nurses,
supra note 808 at 2.
814 Professional Standards LPN, supra note 812 at 9.
815 Canadian Council for Practical Nurse Regulators,
“Standards of Practice for Licensed Practical Nurses in
Canada”, online (pdf ): College of Licensed Practical Nurses of
Alberta <www.clpna.com/governance/standards-code/>.
816 Ibid at 6.
817 Ibid.
818 “Jurisprudence Exam” (2018), online: BC College of
Nursing Professionals <www.bccnp.ca/PracticeSupport/lpn/QA/
Pages/jurisprudence_exam.aspx>
819 BC Care Aide & Community Health Worker Registry,
supra note 9.
820 “Recognized BC Health Care Assistant Programs”,
online: BC Care Aide & Community Health Worker Registry
<www.cachwr.bc.ca/About-the-Registry/List-of-HCA-
programs-in-BC.aspx>.
821 British Columbia, Ministry of Health, “Health Care
Assistants Oversight Policy Intentions Paper for Consultation”,
(November 2016), online (pdf ): Ministry of Health <www2.
gov.bc.ca/assets/gov/health/practitioner-pro/professional-
regulation/hca_new.pdf>.
822 Canadian Nurse, supra note 779.
823 British Columbia, Ministry of Health, “Practice
Standard: Delegating Tasks to Unregulated Care Providers”,
online: BC College of Nursing Professionals <www.bccnp.
ca/Standards/RN_NP/PracticeStandards/Pages/Default.
aspx> [Delegating Tasks to Unregulated Care Providers
Practice Standard].
824 Ibid at 2.
825 Ibid.
826 Ibid at 1–2.
827 British Columbia, Ministry of Health, “BC Health Care
Assistants Core Competency Prole” (2014) at 3, online (pdf ):
Ministry of Health
<www.health.gov.bc.ca/library/publications/year/2014/
HCA-Core-Competency-Prole_March2014.pdf> [HCA
Core Competency Prole]
828 Ministry of Advanced Education and Labour Market
Development, “Health Care Assistant Program Provincial
Curriculum” (2015) at 6 online (pdf ): BC Care Aide &
Community Health Worker Registry <solr.bccampus.ca:8001/
bcc/le/e4e61b7e-6615-436e-9cf1-ce808dce5c63/1/BC%20
Provincial%20HCA%20Curriculum%20Guide%202015%20
Final.pdf> [HCA Curriculum].
829 Ibid at 8.
830 “Internationally Educated Health Care Professional”
(last visited 18 August 2018), online: BC Care Aide &
Community Health Worker Registry <www.cachwr.bc.ca/
Application/International.aspx> [BC Care Aide Internationally
Educated Health Care Professional].
831 “Role and Mandate” (last visited 18 August 2018),
online: BC Care Aide & Community Health Worker Registry
<www.cachwr.bc.ca/About-the-Registry/Role-Mandate.aspx>
[BC Care Aide Role and Mandate].
832 British Columbia, Oce of the Auditor General,
“Physician Funding Models” (last visited 18 August 2018),
online: Oce of the Auditor General of BC <www.bcauditor.
com/online/pubs/775/779> [Auditor General BC Physician
Funding Models].
833 Ibid.
834 Ibid.
835 RSBC 1996, c 286 [Medicare Protection Act].
836 British Columbia, Ministry of Health, Health Sector
Information, Analysis and Reporting Division, “MSP: MSP
Fee-for-service Payment Analysis 2012/2013-2016/2017”,
online (pdf): Ministry of Health <www2.gov.bc.ca/gov/
content/health/practitioner-professional-resources/msp/
publications> [MSP].
837 British Columbia, Ministry of Health, “MSP:
Physicians” (last visited 18 August 2018), online: Ministry of
Health <www2.gov.bc.ca/gov/content/health/practitioner-
professional-resources/msp/physicians> [MSP-Physicians].
838 Canadian Medical Association, “Module 8: Physician
Remuneration Options” (2012) at 4, online: Canadian Medical
Association <www.cma.ca/Assets/assets-library/document/en/
practice-management-and-wellness/module-8-physician-
remuneration-options-e.pdf> [CMA].
839 Garey Mazowita & William Cavers, “Reviving Full-
Service Family Practice in British Columbia” (2011) 19 e
Commonwealth Fund (August 2011) at 5, online (pdf ): General
Practices Services Committee <www.gpscbc.ca/sites/default/les/
uploads/GPSC%20Reviving%20full-service%20family%20
practice%20in%20BC%20August%202011.pdf> [Mazowita].
840 Ibid.
841 Ibid at 3.
842 Ibid at 7.
843 “Mental Health Billing Guide” (last modied January
2018), online (pdf ): General Practice Services Committee <www.
gpscbc.ca/what-we-do/longitudinal-care/billing-guides>.
844 e GP Frailty Complex Care Planning and
Management Fee is payment for the creation of a care plan and
advance payment for the complex work of caring for eligible
patients. e Complex Care Planning and Management Fee is
payment for the creation of a care plan and advance payment for
the complex work of caring for patients with eligible conditions.
845 “Complex Care Billing Guide” (last modied January
2018), online (pdf ): General Practice Services Committee <www.
gpscbc.ca/what-we-do/longitudinal-care/billing-guides>.
846 “Palliative Care Billing Guide” (last modied January
2018), online (pdf ): General Practice Services Committee <www.
gpscbc.ca/what-we-do/longitudinal-care/billing-guides>.
847 “Residential Care Billing Guide” (last modied January
2018), online (pdf ): General Practice Services Committee <www.
gpscbc.ca/what-we-do/longitudinal-care/billing-guides>.
848 “Alternative Payment Programs” (last visited 18
August 2018) online: Government of BC <www2.gov.bc.ca/
gov/content/health/practitioner-professional-resources/
physician-compensation/alternative-payments-program>.
849 Ibid. For example, in rural areas, teaching hospitals and
community and hospital psychiatric services.
850 Ibid.
851 British Columbia, Ministry of Health, “Alternative
Payments Program Policy Framework” (last modied January
2014), at Chapter 1, Section 1 Policy Preamble, online:
Ministry of Health Government of BC <www2.gov.bc.ca/
gov/content/health/practitioner-professional-resources/
physician-compensation/alternative-payments-program>.
852 Interview of Nadeen Johansen, Senior Policy Analyst,
Compensation Initiatives Compensation Policy and Programs
Branch, Workforce Planning, Health Human Resources and
Labour Relations Division,Compensation and Beneciary
Services Division, BC Ministry of Health and Mike Atkinson,
Endnotes 285
consultant to BC Ministry of Health, by Rachel Kelly,
Canadian Centre for Elder Law (7 September 2017).
853 We use the term “physician” broadly to encompass the
medical professionals interviewed as key informants, which
includes family physicians, geriatricians and psychiatrists.
854 Note, two stakeholders advised of their involvement in a
new joint project to address issues around access to information
and resources on topics relevant to palliative care, including
substitute decision making, in languages other than English.
855 CRPD, supra note 65.
856 HCCA, supra note 11, s 3.
857 Ibid, s 7.
858 Ibid, s 6.
859 Ibid, s 6(e).
860 Ibid, s 17.
861 PEI Consent to Treatment Act, supra note 310, s 7(3)-(4)
(bolding to titles added by us).
862 Ontario HCCA, supra note 266, s 15.
863 Manitoba Law Reform Commission, Substitute Consent
to Health Care, Report 110 (2004) at 27 [Manitoba Law Reform
Commission].
864 Understanding the Lived Experience of Supported Decision
Making, supra note 367.
865 Although the Representation Agreement Act does not use
the expression “supported decision making” but instead refers
to authority “to help the adult make decisions”, this language
was incorporated into the Act as a result of advocacy by families
who make use of supported decision making, and the reference
is widely understood, both locally and internationally, to have
codied supported decision making in BC.
866 CRPD, supra note 65.
867 Department of Economic and Social Aairs,
Division for Inclusive Social Development, Handbook for
Parliamentarians, 2007, No 14, at Chapter Six: From provisions
to practice: implementing the Convention – Legal capacity and
supported decision-making, online: United Nations—Disability
<www.un.org/development/desa/disabilities/resources/
handbook-for-parliamentarians-on-the-convention-on-the-
rights-of-persons-with-disabilities.html>. Canada has entered
a reservation with respect to Article 12 in order to preserve its
ability to retain substitute decision making, where appropriate.
868 HCCA, supra note 11, ss 11, 12(3).
869 Ibid, s 4.
870 Ibid, s 2.
871 MHA, supra note 55, s 31.
872 PRN is the term commonly used in medical practice to
describe a physician order to administer medication as needed,
or as circumstances require, as opposed to on an ongoing basis,
such as to manage pain. e abbreviation comes from the Latin,
pro re nata. See Merriam-Webster, sub verbo “prn”.
873 RC Reg, supra note 14, s 81.
874 HCCA, supra note 11, s 1, denition of “health care”.
875 Ibid, ss 4, 12.
876 RC Reg, supra note 14, s 81(2).
877 Ibid.
878 Ibid, s 81(3).
879 RC Reg, supra note 14, s 85.
880 WAC, supra note 656, 246-320-141.
881 Washington State Health Law Manual, supra note
660 at 2A-4.
882 Residents’ Bill of Rights, s 1, being Schedule to theCCAL
Act, supra note 521.
883 CCAL Act, supra note 521, Schedule, s 3.
884 Hospital Act, supra note 568, s 4(4); CCAL Act, supra note
521, s 7(1)(c.1).
885 LTCH Act, supra note 598, s 3.
886 CCR, supra note 674, tit 22, § 70707(b)(6)(1975).
887 WAC, supra note 656, 388-97-0300 (3).
888 RAA, supra note 360, s 16(2).
889 HCCA, supra note 11, s 19(1)(a).
890 PPA, supra note 383. e subsection came into force on 1
December 2014.
891 RAA, supra note 360, ss 16(3).
892 HCCA, supra note 11, s. 19(1).
893 Ibid, s 16(2); RAA, supra note 360, s 16(4).
894 PPA, supra note 383, s 18(1).
895 Ibid, s 18(2).
896 Adult Guardianship Act, supra note 82, c 6, Part 2, not
yet in force; see Adult Guardianship and Planning Statutes
Amendment Act, SBC 2007 c 34 ss 1-18 and 64.
897 Ibid, s 20(1) – (3), not yet in force; see Adult
Guardianship and Planning Statutes Amendment Act, SBC
2007 c 34, s 4.
898 Private hospitals providing long-term care and extended
care hospitals are not governed by these regulations, and instead
by the Hospital Act, supra note 511, which does not regulate
the use of restraints. It is anticipated that the new regulations
associated with Part 3 of the Health Care (Consent) and Care
Facility (Admissions) Act, which are expected to come into force
in 2019, will widen the application of the restraint provisions
in the RC Regulation to a broader range of facilities, private
hospitals under Part 2 of the Hospital Act and institutions
designated as hospitals under (b) and (c) of the denition of
“hospital” in the Hospital Act (rehabilitation or extended care
hospitals).
899 RC Reg, supra note 14, at s 1.
900 Ibid, ss 74(1)(b)(i)–(ii).
901 Ibid, s 1.
902 Ibid.
903 Ibid, s. 1
904 RAA, supra note 360, s 9.
905 LTCH Act, supra note 598, s 31(2).
906 RC Reg. supra note 14, s 75(1).
907 Ibid, s 75(3).
908 Ibid, s 73(3).
909 Ibid, Schedule D, s 1.
910 Ibid, s 77(2).
911 Ibid, s 1.
912 “Practice Standards: Restraints”, supra note 686, at 4.
913 Position Statement on the Use of Restraints, supra
note 688 at 4.
914 Use of Restraints in Residential Care Facilities,
supra note 693.
915 Emanuel et al, supra note 687.
916 RC Reg, supra note, 14, s 85(2)(i).
917 “Consent of “Minors”: Infants Act” (30 July 2015), online
(pdf): College of Physicians and Surgeons of BC <www.cpsbc.ca/
for-physicians/standards-guidelines>.
918 “Standard of Practice: Informed Consent”, online
(pdf): Yukon Medical Council <www.yukonmedicalcouncil.ca/
standards.html>; “Consent to Treatment” (last modied May
2015), online: College of Physicians Ontario <www.cpso.on.ca/
Policies-Publications/Policy/Consent-to-Treatment>.
286 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
919 Code of Ethics of Physicians (Quebec), Division III,
Consent, online: Collège des Médecins du Québec <www.cmq.org/
publications-pdf/p-6-2015-01-07-en-code-de-deontologie-
des-medecins.pdf?t=1479755746220>.
920 Canadian Medical Association, Code of Ethics,
supra note 69.
921 “Non-Hospital Medical and Surgical Facilities
Accreditation Standards: Consent” (30 December 2017),
online (pdf): College of Physicians and Surgeons <www.cpsbc.ca/
programs/nhmsfap/standards>.
922 e CMPA is a membership-based, not-for-prot
organization that provides legal defense, liability protection, and
risk management education for physicians practicing in Canada.
923 “Standard of Practice: Client Consent” (2018), online
(pdf): College of Speech and Hearing Health Professionals
<cshhpbc.org/docs/consent_standard636565552211467907.
pdf?LanguageID=EN-US>.
924 “Clinical Practice Guideline: Health Care Providers’
Guide to Health Care Consent” (2018), online (pdf): College
of Speech and Hearing Health Professionals <cshhpbc.org/docs/
health-care-providers_-guide-to-consent-to-health-care_
(2)636548226741445071.pdf>.
925 “Our Impact: Early data from seven divisions
show positive impact” (last visited 19 August
2018), online: General Practice Services Committee
<www.gpscbc.ca/our-impact/residential-care/
early-data-seven-divisions-show-positive-impact>.
926 Ibid.
927 Consent Practice Standard, supra note 794; Consent
Practice Standard Licensed Practical Nurses, supra note 808.
928 In spite of the title, the exam is largely focused on
statutory law, not case law.
929 HCA Core Competency Prole, supra note 827.
930 HCA Curriculum, supra note 828 at 6.
931 Ibid at 8.
932 BC Care Aide Internationally Educated Health Care
Professional, supra note 830.
933 BC Care Aide Role and Mandate, supra note 831.
934 HCCA, supra note 11, s 3.
935 HCCA, supra note 11, ss 6(e) and 7. is is not an exact
quotation of s 7. e section has been edited to include elements
of s 6 in order to avoid cross-referencing.
936 O’Connor, supra note 156 at 1.
937 Ibid, at 3.
938 British Columbia, Public Guardian and Trustee, Practice
Guidelines for Incapability Assessments for the Purposes of
the Adult Guardianship Act Part 3: Support and Assistance for
Abused and Neglected Adults and the Adult Guardianship
(Abuse and Neglect) Regulation (revised draft Sept 1, 2011).
939 O’Connor, supra note 156 at 3.
940 Ibid, at 7.
941 Ibid, at 3.
942 Ibid, at 33.
943 Ibid, at 34
944 Ibid, at 33.
945 Where a TSDM is chosen to make a decision under s
16 of the HCCA with respect to major health care, the health
care provider is required to notify the adult and spouse or family
member that a TSDM has been chosen, who the TSDM is, and
whether the TSDM has consented to or refused consent for
health care recommended by the physician: HCCA, supra note
11, s 14(4)(b) and HCC Reg, supra note 260, s 6: Form 1: Notice
of Incapability and Substitute Consent (Major Health Care).
946 Best of Care 2, supra note 270 at 291.
947 Ibid at 292.
948 Ibid.
949 Ibid at 291.
950 Ibid; Consent Practice Standard, supra note 794.
951 Consent Practice Standard Licensed Practical Nurses,
supra note 808.
952 Consent Practice Standard, supra note 794; Best of Care
2, supra note 270 at 291.
953 LTCH Reg, supra note 609, s29.
954 CCR, supra note 674, tit 22, § 72528(c)).
955 WAC, supra note 656, 388-97-0260 (1).
956 CFR, supra note 656, tit 42, § 482.24(c)(4)(v);
Washington Health Law Manual, supra note 660 at 2A-6.
957 “MOST Information for Health Care Providers” (last
visited 19 August 2018), online: Island Health <www.viha.ca/
advance_care_planning/most_healthcareprofessionals.htm>.
958 HCCA, supra note 11, s 19.5.
959 Health Care Consent Project Advisory
Committee meeting.
960 College of Physicians and Surgeons Bylaws, supra note
770 at 3–5(1).
961 See discussion in supra note945.
962 British Columbia, Ministry of Health, “A Health Care
Providers Guide to Consent to Health Care” (2011) at 6, online
(pdf): College of Physical erapists of British Columbia <cptbc.
org/resources/health-care-providers-guide-consent-health-
care-ministry-health-2011/> [Health Care Providers Guide
to Consent].
963 Dementia in Canada, supra note 22 at 41.
964 Dementia Care (last visited 19 August 2018), online:
Douglas College <www.douglascollege.ca/programs-courses/
continuing-education/health/dementia-care>. e material was
updated in 2017 and developed with stakeholder input.
965 “Gentle Persuasive Approaches” (last visited 19 August
2018), online: Advanced Gerontological Education <ageinc.ca/
about-gpa-2/>.
966 P.I.E.C.E.S., supra note 32.
967 “Learning Hub” (last visited 19 August 2018), online:
Provincial Health Services Authority <learninghub.phsa.ca/
Learner/Search?CourseTitle=dementia>.
968 “Dementia Care Workshops Train Nearly 300” (30
March 2015), online: SafeCare BC <safecarebc.ca/2015/03/30/
dementia-care-workshops-train-nearly-300/>.
969 Provincial Guide to Dementia, supra note 28 at 14.
970 Ibid.
971 BPSD Guideline, supra note 1 at 3, 13.
972 LCO Report on Capacity, supra note 371 at 92.
973 Ibid at 94.
974 MHA, supra note 55, ss 31, 1 (denition of “treatment”);
See also Gray, supra note 401.
975 Ibid at s 22.
976 Ibid at s 1.
977 e DSM-5 uses the equivalent term “major
neurocognitive impairment”: see DSM-5, supra note 78.
978 Adult Guardianship Act, supra note 82 at 59.
979 MHA, supra note 55, s 22(3)(c). In addition to being
of the opinion that the person has a “mental disorder” the
physician must be of the view that the person (i) requires
treatment in or through a designated facility, (ii) requires care,
Endnotes 287
supervision and control in or through a designated facility to
prevent the person’s or patient’s substantial mental or physical
deterioration or for the protection of the person or patient or
the protection of others, and(iii) cannot suitably be admitted as
a voluntary patient.
980 MHA, ibid, s 23; Seniors First Advocate’s Manual,
supra note 473.
981 MHA, ibid, s 24.
982 Ibid, s 37.
983 Ibid, s 39(1)
984 Best of Care 2, supra note 270, at 267.
985 Ibid at 270 – Recommendation 130.
986 Best of Care 2015 Update, supra note 734 at 31.
987 RC Reg, supra note 14, s 42.
988 CCAL Act, supra note 521, s 7; RC Reg, supra note
14, s 37(2).
989 Hospital Act, supra note 568, s 17.
990 Daniel Fontaine, “e Case for Minimum Direct Care
Hours Per Site” (28 February 2017) online: BC Care Providers
Association <bccare.ca/2017/02/the-case-for-minimum-direct-
care-hours-per-site/> citing Home and Community Care
Program, “Costing Assumptions #3 for the Proposed Stang
Framework for Residential Care Facilities,” 11 August 2009,
at note iv. e reference to care “per resident day” denotes
an averaging across all residents within the health authority,
that is to say, a recognition that some residents would require
more, or less, than the minimum recommended. is number
does not include non-medical services such as housekeeping,
laundry and meals.
991 “Residential Care Facilities: Quick Facts Directory”
(2018) at 7, online (pdf ): Oce of the Seniors Advocate <www.
seniorsadvocatebc.ca/residential-care-quick-facts-directory/>.
992 British Columbia, Minister for Seniors, “Residential
Care Stang Review” (2017) at 6–8, online (pdf ): Ministry of
Heath <www.health.gov.bc.ca/library/publications/year/2017/
residential-care-stang-review.pdf>.
993 British Columbia, Ministry of Health, “Action Plan to
Strengthen Home and Community Care for Seniors” (2017),
online (pdf): Ministry of Health <www2.gov.bc.ca/gov/content/
health/accessing-health-care/home-community-care>.
994 Ibid at 9.
995 Ibid at 10.
996 “Promising Practices in Long Term Care: Ideas Worth
Sharing” (2015) at 74, online (pdf): Canadian Centre for Policy
Alternatives <www.policyalternatives.ca/publications/reports/
promising-practices-long-term-care>.
997 “Position Statement – Mandated Nurse-Patient Ratios”
(2015) at 5, online (pdf ): BC Nurses Union <www.bcnu.org/
about-bcnu/position-statements>.
998 “Stand Up For Seniors Care: Fact Sheet #1 Stang
and Quality of Care” online (pdf ): Hospital Employees Union
<www.heu.org/sites/default/les/uploads/2010%20seniors/
SUSC_FactShtALL.pdf>.
999 “Aging with Condence: Ontario’s
Action Plan for Seniors” (2017), online (pdf ):
Government of Ontario <www.ontario.ca/page/
aging-condence-ontario-action-plan-seniors>.
1000 NP Streams of Practice, supra note 745.
1001 Lesley Charles et al, “Care of the Elderly Program
at the University of Alberta” (2014) 60:11 Canadian Family
PhysicianNovember e521, online: Canadian Family Physician
<www.cfp.ca/content/60/11/e521.full>.
1002 Auditor General BC Physician Funding Models,
supra note 832.
1003 Ibid.
1004 Medicare Protection Act, supra note 835.
1005 MSP, supra note 836.
1006 MSP-Physicians, supra note 837.
1007 CMA, supra note 838 at 4.
1008 Mazowita, supra note 839 at 5.
1009 Ibid.
1010 Ibid at 3.
1011 Ibid at 7.
1012 “Mental Health Billing Guide” (last modied January
2018), online (pdf ): General Practice Services Committee <www.
gpscbc.ca/what-we-do/longitudinal-care/billing-guides>.
1013 e GP Frailty Complex Care Planning and
Management Fee is payment for the creation of a care plan and
advance payment for the complex work of caring for eligible
patients. e Complex Care Planning and Management Fee is
payment for the creation of a care plan and advance payment for
the complex work of caring for patients with eligible conditions.
1014 “Complex Care Billing Guide” (last modied January
2018), online (pdf ): General Practice Services Committee <www.
gpscbc.ca/what-we-do/longitudinal-care/billing-guides>.
1015 “Palliative Care Billing Guide” (last modied January
2018), online (pdf ): General Practice Services Committee <www.
gpscbc.ca/what-we-do/longitudinal-care/billing-guides>.
1016 “Residential Care Billing Guide” (last modied January
2018), online (pdf ): General Practice Services Committee <www.
gpscbc.ca/what-we-do/longitudinal-care/billing-guides>.
1017 Truth and Reconciliation Commission of Canada, Call
to Action (Winnipeg: Truth and Reconciliation Commission of
Canada) at 23-24.
1018 Deepthi Jayatilaka, “Dancing in Both Worlds: A Review
of the Aboriginal Patient Liaison/ Navigator Program in
British Columbia” ( July 2015) at 21, online (pdf ): Vancouver
Provincial Health Services Authority <www.phsa.ca/Documents/
DancinginBothWorldsFINALJuly2015.pdf>.
1019 Ibid at 5–6.
1020 e PHSA also provides sign-language interpreting
services through the Western Institute for the Deaf and
Hard of Hearing (WIDHH), for which there is no charge
to the patient or the relevant department of the health
authority. Sign-language interpreting must be booked directly
through the WIDHH.
1021 “Spoken Language Interpreting Services”, online:
Provincial Health Services Authority <www.phsa.ca/health-
professionals/professional-resources/interpreting-services>
[Provincial Health Services Authority].
1022 Ibid.
1023 Ibid.
1024 Ibid.
1025 Telephone call between Rachel Kelly, CCEL and
a representative of the Provincial Language Service on
October 25, 2018.
1026 Ibid.
1027 Charter, supra note 52.
1028 Carter v Canada (Attorney General), 2015 SCC 5 at 67.
1029 We have noted some of the matters covered by s. 33.4
are being brought in other ways. For example, an application
to rescind the appointment of a committee when other family
members did not like the treatment decisions being made
for the adult or a petition seeking an injunction preventing
288 Conversations about Care: The Law and Practice of Health Care Consent for People Living with Dementia in British Columbia
a committee from ever making a decision to withdraw life
support (Ng. v. Ng, 2013 BCSC 1997) or a petition seeking a
declaration that an adult not be given nourishment that she
allegedly did not consent to (Bentley, supra note 262).
1030 British Columbia, Oce of the Ombudsperson, “No
longer your decision: British Columbia’s process for appointing
the public guardian and trustee to manage the nancial aairs
of incapable adults” (6 February 2013) at 110, online: Oce
of the Ombudsperson <www.bcombudsperson.ca/documents/
no-longer-your-decision-british-columbias-process-
appointing-public-guardian-and-trustee> [Ombudsperson].
1031 Ibid.
1032 Ibid.
1033 Ibid.
1034 Ibid.
1035 SBC 2003 c 96, ss 28-36.
1036 Ombudsperson, supra note 1030 at 110.
1037 BCLI AGA Paper supra note 544, at 25.
1038 Ibid.
1039 Ontario HCCA, supra note 266, Schedule A at s 32(1).
1040 LCO Report on Capacity, supra note 371 at 105
(Recommendation 7), 108 (Recommendation 8).
1041 Ibid at 229 (Recommendation 29).
1042 Ibid at 248.
1043 Yukon Care Consent Act, supra note 310, s 37.
1044 Ibid, s 39(1).
1045 Ibid, 39(2)
1046 Ibid, s 40.
1047 Manitoba Law Reform Commission, supra
note 863 at 50.
1048 “Administrative Tribunals and the Courts: an
Evolutionary Relationship” (last visited 11 February 2019),
online: Supreme Court of Canada <www.scc-csc.ca/judges-juges/
spe-dis/bm-2013-05-27-eng.aspx>.
1049 HCCA, supra note 11, s 33.4 Section 33.4 was enacted
by 2007-34-30 eective September 1, 2011 (BC Reg 14/2011).
1050 Ibid, s 33.4(2).
1051 PPA, supra note 383 at s 4.
1052 Ibid, s 6.
1053 MHA, supra note 55, s 25.
1054 Ibid, s 24(2).
1055 Ibid, s 33(2).
1056 “Legal representation by a lawyer” (last visited 28 August
2018), online: Legal Services Society <lss.bc.ca/legal_aid/
legalRepresentation.php>.
1057 Note, there are numerous other issues which impact the
fundamental rights of older people for which legal aid funding
is not provided. ese include advice and representation in
respect of detention pursuant to the Mental Health Act and
related applications and Adult Guardianship Act measures,
including support and assistance orders and emergency
interventions against an adult’s wishes under Part 3. However,
while we recognize these topics as presenting important access
to justice issues which require addressing, they fall outside the
scope of this project.
1058 BCLI AGA Paper, supra note 544 at 59–60.
1059 Ibid.
1060 Ibid at 60.
1061 Ibid at 61.
1062 BC Civil Liberties Association, Community Legal
Assistance Society, West Coast Leaf & Pivot, “Justice
Reform for BC: Priorities for the Attorney General and
Solicitor General of BC” (Fall 2017) at 1, online (pdf):
Community Legal Assistance Society <www.clasbc.net/
justice_reform_bc_priorities_for_the_provincial_government>.
1063 Operating in Darkness, supra note 59 at 61-62.
1064 Ibid at 60.
1065 Ibid at 68.
1066 “CBABC Statement supporting CLAS
report” (December 5, 2017), online: Canadian
Bar Association British Columbia Branch <www.
cbabc.org/News-Media/Media-Releases/2017/
CBABC-statement-of-support-for-CLAS-Operating-in-D>.
1067 “An Agenda for Justice” (February 2017), online:
Canadian Bar Association BC Branch <www.cbabc.org/
Our-Work/Advocacy/An-Agenda-for-Justice>.
1068 Ibid at 4.
1069 Clare Henning, “Legal aid funding in B.C. budget
doesn’t cover demand for services, CBA says” (21 February
2018), online: CBC News <www.cbc.ca/news/canada/british-
columbia/2018-budget-falls-short-on-legal-aid-1.4545805>;
Ian Burns “B.C. budget boosts legal aid funding but it’s still
‘woefully underfunded,’ women’s equality group says” (26
February 2018), online: LexisNexis Canada e Lawyer’s Daily
<www.thelawyersdaily.ca/articles/5971/b-c-budget-boosts-
legal-aid-funding-but-it-s-still-woefully-underfunded-
women-s-equality-group-says>.
1070 BCLI CL Capacity Report, supra note 330, at 160-163.
1071 Ibid at 162.
1072 Ibid at 160 citing Bank of Nova Scotia v. Kelly (1973), 41
DLR (3d) 273 at 275.
1073 Ibid at 160.
1074 RAA, supra note 360, s 8.
1075 RAA, supra note 360, s 8(1)(a).
1076 Ibid, s 8(2).
1077 Code of Professional Conduct, supra note 551 at
Rule 3.2-9.
1078 Ibid at Commentary Note 1.
1079 Buchanan, supra note 555 at 15.
1080 Ibid, at 15-16.
1081 BCLI CL Report, supra note 330, at 172
(Recommendation 26).
1822 East Mall, University of British Columbia, Vancouver, BC, V6T 1Z1
www.bcli.org/ccel
289
PRINCIPAL FUNDERS IN 2018
e British Columbia Law Institute expresses its thanks to its funders in 2018:
• Law Foundation of British Columbia
• Ministry of Attorney General
• Notary Foundation of British Columbia
• Real Estate Foundation of British Columbia
• Real Estate Council of British Columbia
• Real Estate Institute of British Columbia
• Strata Property Agents of British Columbia
• Association of British Columbia Land Surveyors
• Vancouver Island Strata Owners Association
• Condominium Home Owners Association
• Ministry of Municipal Aairs and Housing
• Coalition of BC Businesses
• BC Government Employees Union
• Health Employees Union
• Ministry of Labour
• Law Foundation of Ontario Access to Justice Fund
• AGE-WELL NCE (Aging Gracefully across Environments using Technology to Support
Wellness, Engagement and Long Life NCE Inc.)
• Ministry of Social and Family Development, Adult Protection Service, Singapore
BCLI also reiterates its thanks to all those individuals and organizations who have provided nancial
support for its present and past activities.
Photography by Flora Gordon and Jenna Pullen.
Graphic design by June Pang.
