Another week? Another week! I can't take another week

303 Pages·2016·2.38 MB·English

“Another week? Another week! I can’t take another
week”

Addressing barriers to effective access to legal assisted
dying through legislative, regulatory and other means

Pam Oliver

A thesis submitted in fulfilment of the requirements for the degree of Doctor of Philosophy
in Law, The University of Auckland, 2016.
Addressing access barriers to legal assisted dying
Abstract

Those who oppose a change in the law often shift their arguments to hypothetical victims,
some of them glimpsed at the bottom of a slippery slope.1

Although assisted dying has been legalised by specific statute in 10 jurisdictions in just over
two decades, to date none of those statutes has undergone a rigorous, systematic formative
evaluation to identify its strengths and weaknesses, in particular any barriers to access for
people seeking legal assisted dying. The research literature suggested that such barriers
might arise in part as a result of various ‘safeguards’ built into the statutes to protect against
any potential for abuse of people vulnerable to being pressured into seeking assisted dying.
Applying an interdisciplinary approach, integrating law and medicine with some aspects of
psychology and sociology, this research adopted a ‘utilization-focused’ evaluation research
paradigm to identify both barriers to access and attempts across jurisdictions to mitigate
such barriers, whether by legislative, regulatory or other means. It then analysed the
effectiveness of those mitigation strategies and explored other ways in which access barriers
might be avoided or mitigated. Significant barriers were identified not only for people
seeking legal assisted dying but also for doctors and other health practitioners who wanted
to become involved in undertaking assisted dying functions. An analysis of the underlying
causes of the diverse barriers identified revealed a pattern of both purposeful and
inadvertent gatekeeping by those opposing or equivocal about legal assisted dying. The
research explored current developments across jurisdictions proposing to legislate for
assisted dying and identified a process of evolution where new assisted dying Bills are
innovating rather than transplanting statutory provisions and frameworks. Specific
suggestions have been proposed for ‘critical enablers’ within assisted dying statutes to
facilitate fair and reasonable access and provide a balance against gatekeeping. A proposal
is made for mainstreaming formative evaluation of new statutes as a standard practice in
health and social law reform.

1 Tony Delamothe, Rosamund Snow and Fiona Godlee “Why the Assisted Dying Bill should become law in
England and Wales” (2014) 349 BMJ g4349.
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Addressing access barriers to legal assisted dying
Dedication

For my Mum

Title quote

The title quote is from Colin Marriage, 40, newly married, dying from adenocarcinoma of
the oesophagus and liver, suffering constant uncontrollable vomiting and unrelievable pain,
replying to his doctor when told that he might live for at least another week, despite having
refused all life-prolonging treatments and nutrition and hydration in desperation to hasten
death (“Good care but a bad death” in Lesley Close and Jo Cartwright (eds) Assisted Dying:
Who Makes the Final Decision? (Peter Owen, London, 2014)).

Acknowledgements

My greatest debt in undertaking this project is to the people who told me their stories, often
emotional and always frank and articulate, about being involved in helping dying people to
ease their death. You have my admiration as well as my thanks, I hope I’ve represented
your experience faithfully. Big thanks are owed to Jo Manning and Phillipa Malpas for
being willing to support a research paradigm that they were not familiar with and give
detailed and always thought-provoking comments, and to Katrina Roen for invaluable
intellectual and moral support. Special thanks to Rob Jonquiere and Robb Miller for being
always available to keep patiently clarifying my questions about what might or wouldn’t
work for doctors and others who have to navigate the laws, and to many other people both
in New Zealand and elsewhere who gave me their thoughtful and often detailed
commentary on suggestions for making law that could work. Thanks to David Wexler for
superb networking, Erin Sandberg for providing translation that went beyond the literal,
Rob Brennan and Jocelyn Downie for nitpicking at my ideas about what might and couldn’t
work in a statute, to Hilary Lapsley for reminding me of the courage of my convictions,
Jack Havill for his public support when I was being attacked by the religious righteous, the
wonderful Lisa Morice for intelligent proofing, and Mike Wilson for keeping me sane when
my computer wouldn’t comply. My gratitude to Prue Taylor and Klaus Bosselman for
moral support and practical advice, to the generously helpful staff at the Davis Law Library,
and to Phil Carr who first showed me how gentle the euthanasia process is for much-loved
animal family members. And above all thanks to my Dad, for teaching me to be meticulous,
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and my Mum, for perching in my head and reminding me constantly to think about what
will be best for everyone, not just the people who agree with me.

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Addressing access barriers to legal assisted dying
Table of contents

Abstract
Dedication i
Title quote ii
Acknowledgements ii
Table of contents iv
List of tables vii
List of figures vii
Table of statutes and Bills viii
Table of cases x
List of abbreviations xi

Preface xii
A The starting point xii
B Caveats xiii
1 Research focus - out of scope xiii
2 Contemporary dynamics of the legal assisted dying movement xiv
C Thesis style and structure xiv
1 Author’s voice xiv
2 Terminology xiv
3 Layout of the thesis xviii
4 Environmental impact xix

Chapter 1. Why was evaluative research needed? 1
A Current status of the assisted dying debate 1
B International developments in legalising AD 2
1 Existing and pending legislation 2
2 Legalisation through the courts 3
3 Factors affecting the momentum towards legalising assisted dying 4
4 Public attitudes towards legalising AD 6
C The New Zealand situation 7
1 New Zealand law relevant to AD 7
2 New Zealanders’ attitudes towards AD 9
3 Attempts at AD legislation in New Zealand 12
D Legislative models for AD 14
E Access barriers and related issues in implementing AD laws 25
1 The evidence to date 25
2 Access barriers and related issues 26
3 Lack of formative evaluation or qualitative research on AD implementation 30
F Purposes, focus and scope of the research 30
1 Focus and scope 30
2 Purposes of the research 31
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Chapter 2. Research design and approach 32
A Scoping the research 32
B Research questions 32
C Design principles and methodological framework 33
1 Design principles 33
2 Methodological framework - grounded theory 34
D Data collection 35
1 Evidence review 35
2 Stakeholder interviews 36
3 Cultural considerations 38
4 Ethical considerations and protections 39
5 Limitations of the methods 39
E Data analysis and synthesis 39
F Reporting the findings 40

Chapter 3. Theoretical perspectives on AD access 41
A Therapeutic jurisprudence 41
1 TJ and AD law 42
2 TJ and medical ethics 44
3 TJ as a research tool 45
B Social ecological model of health policy 46
1 Social ecology of AD law-making and decision-making 46
C Legislative intent and interpretation 48
1 Permissive and restrictive intent 48
2 Is it relevant, or even possible, to determine legislative intent? 50
3 The evolving intent of AD laws 52
D Health law and risk regulation 53
1 Risk perception and individual decision-making 53
2 ‘Nudge’ – risk regulation and behavioural economics 54
3 Regulation and social control 56
4 Regulation and compliance 58
E Health law, rights and medical ethics 59
1 Can there be a right to die with dignity? 59
2 Rights, medical ethics and TJ 61
F Evaluating health law 63
G Applying the frameworks to the research findings 63

Chapter 4. Assisted dying as a relational decision-making process 64
A Structuring the discussion 64
1 Chapter structure 64
2 Communicating the research findings 65
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B Part 1. Making the initial decision to seek AD 66
1 End-of-life decision-making 66
2 What motivates hastened death? 67
3 Barriers affecting initial decision-making 69
4 Effective measures enabling initial AD decision-making 79
5 How might legislation and regulation further enable access to AD? 85
6 Beyond regulation? 96
7 Summary 98
C Part 2. Making a viable AD request 98
1 Trends in AD uptake 98
2 Making a formal request 99
3 Barriers to a viable AD request 101
4 What enables a viable AD request, and what more is needed? 118
5 Beyond regulation? 141
6 Summary 143
D Part 3. Eligibility assessment 143
1 Eligibility and due care requirements - Commonalities and differences across 143
jurisdictions
2 Patterns in granting AD 144
3 Barriers in the assessment process 146
4 What has enabled an effective assessment process, and what more is needed? 164
5 Beyond regulation? 183
6 Summary 184
E Part 4. Administering, reporting and accountability 184
1 Administration methods 184
2 Barriers to effective administration 186
3 What has enabled effective AD administration, and what more is needed? 193
4 AD by advance directive 202
5 Regulating for effective reporting and accountability 203
6 Summary 205
F Table of suggestions for statutory provisions 206

Chapter 5. So what’s been learned and how can it be used? 218
A Summary – The root of the access problem 218
B Looking at the trends - Consumer-driven law reform 219
C Addressing access barriers – ‘Critical enablers’ 220
1 What are ‘critical enablers’? 220
2 What are the ‘critical’ enablers of AD? 221
3 Are some enablers essential? 221
D Making AD law that ‘works’ 224
1 Caveat 224
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2 How to determine what constitutes ‘good’ AD law 225
3 What comprises ‘good’ AD law-making? A suggested paradigm for 233
constructing effective AD legislation
4 What revisions are possible to the existing laws? 236
5 What is the role of the courts in facilitating access to legal AD? 236
E Evaluating AD law reform 237
1 Why evaluate AD law reform? 237
2 Indicators and standards for evaluation of laws 238
3 A methodology for evaluation of health law reform 240
F Implications for an AD law in New Zealand 242
1 Need for end-of-life and AD policy 242
2 The End of Life Choice (EOLC) Bill 2015 242
3 Te Tiriti o Waitangi and other cultural considerations 244
4 Rights 245
5 Free AD 245
G Directions for future research 246
H Meta-evaluation of the research design 247
I A comment on undertaking interdisciplinary research and solo research on 248
sensitive topics
J The last word 249

Appendix 1. Interview sample 250
Appendix 2. Interview guide 251
Appendix 3. Consent Form and Participant Information Sheet 253
Bibliography 255

List of tables

Table 1. Summary of key statutory provisions across jurisdictions 16
Table 2. Suggested statutory provisions for facilitating effective and 206
equitable access to AD
Table 3. Aspects of methodology for evaluating AD law 241
Table 4. Interview sample 250

List of figures

Figure 1. A social ecology of assisted dying law-making and decision- 47
making
Figure 2. Action research cycle for evaluating new laws 240
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Table of statutes and Bills

Acts Abbreviation
New Zealand
New Zealand Bill of Rights Act 1990. NZBORA
Contraception, Sterilisation, and Abortion Act 1977.
Crimes Act 1961.
Health and Disability Commissioner Act 1994.
Health Practitioners Competence Assurance Act 2003. HPCA Act
New Zealand Public Health and Disability Act 2000.

Australia
The Rights of the Terminally Ill Act 1995 (NT).2
Charter of Human Rights and Responsibilities Act 2006 (Victoria).

Canada
Canadian Charter of Rights and Freedoms 1982.

Europe
Code pénal Suisse 1937 (Switzerland).
European Convention on Human Rights 1950.
Law on Euthanasia of 28 May 2002 (Belgium).
Termination of Life on Request and Assisted Suicide (Review
Procedures) Act 2002 (The Netherlands).

Québec
Bill 52: An Act respecting end-of-life care 2014. Bill 52

South Africa
Constitution of the Republic of South Africa 1996 (South Africa)
Chapter 2 Bill of Rights.

Switzerland
Loi sur la santé (LS) (K 1 03) (Neuchatel) art. 39A.
Loi sur la santé publique (LSP) (Vaud) AS art. 27d.

United Kingdom
Abortion Act 1967 (UK).

2 Assisted dying statutes are in italics.
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United States
No. 39. An act relating to patient choice and control at end of life
2013 (Vermont).
Death with Dignity Act (Oregon) 1997. DWDA
Death with Dignity Act Oregon Revised Statutes 2013.
Death with Dignity Act (RCW 70.245) (Washington).
End of Life Option Act 2015 (California).
Matt Adler Suicide Assessment, Treatment and Management Act
2012 (Washington).
Patient Protection and Affordable Care Act 2010 (P.L. 111-148). PPACA

Bills Abbreviation
New Zealand
Death with Dignity Bill 1995 (Member’s Bill). DwD (NZ) Bill 1995
Death with Dignity Bill 2003 (Member’s Bill). DwD (NZ) Bill 2003
End of Life Choice Bill 2012 (Member’s Bill).
End of Life Choice Bill 2015 (Member’s Bill). EOLC Bill

Australia
Medical Services (Dying with Dignity) 2014 (Exposure Draft
Bill 2014 No. 2014) (Parliament of Australia).
Voluntary Assisted Dying Bill 2013 (Bill 61 of 2013)
(Tasmania).

Israel
‘Physician Assisted Suicide’ Bill 2014.

United Kingdom
Assisted Dying Bill 2014 (HL Bill 6). Lord Falconer’s Bill
Assisted Dying for the Terminally Ill Bill [HL]. Lord Joffe’s Bill
Assisted Dying (No.2) Bill 2015-16 (HC Bill 7). Maris’s Bill
Assisted Suicide (Scotland) Bill 2013 (SP Bill 40).
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