“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

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 Addressing access barriers to legal assisted dying v 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 Addressing access barriers to legal assisted dying vi 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 jurisdictions 143 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 Addressing access barriers to legal assisted dying vii 2 How to determine what constitutes ‘good’ AD law 225 3 What comprises ‘good’ AD law-making? A suggested paradigm for constructing effective AD legislation 233 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 sensitive topics 248