DECIDING FOR OTHERS: INCOMPETENCE, BEST INTERESTS AND END-OF-LIFE CASES Kathryn McAuley A Thesis Submitted for the Degree of Doctor of Philosophy at Te Whare Wānanga o Otāgo, University of Otago, Aotearoa, New Zealand, 2016 Abstract The ideal way through life for each of us is a journey, where we can control our own lives and make our own decisions. For some this is not possible, and for these people decisions need to be made on their behalf. Healthcare decisions are of fundamental importance, and of these, the most acute are about life and death. This thesis discusses the tragedy of the incompetent patient, for whom such a life or death decision must be made. The difficulty of these sorts of decisions has necessitated decision-making on behalf of these incompetent patients by the judiciary. The case may have gone to court because of differences of opinion between the medical profession and the families, or it may be because it is unclear whether the proposed action is even legal. Regardless of how it came within the court’s domain, the judges then become the decision-makers for the incompetent patient. To make these difficult decisions the judge uses the best interests of the patient as the decision-making principle. Best interests is a complicated term, as it necessitates the involvement of other values, which are compared and evaluated. To understand how well judges are using this principle, this thesis analyses cases from four Commonwealth jurisdictions, concluding that the best interests test has been applied in a way that is less consistent than can be expected from a common law jurisdiction focused on predictability. Specifically, there is little agreement on the definition of best interests, nor is there a common formula for the weighting and balancing of the various interests which are inevitably at stake. What counts as interests, and which interests a permanently incompetent person is attributed with also varies. Additionally, the focus on the individual, which is fixed in its centrality to the best interests test, has become its primary goal, to the detriment of recognising a wider interpretation of interests that the patient may have, including the interest that he or she may have for others, such as their family. This thesis discusses all of these issues, and concludes with a list of recommendations for the consideration of the best interests test when applied to the permanently incompetent person. ii For Elizabeth and Laura iii Table of Contents Abstract ii Dedication iii Table of Contents iv List of Tables viii List of Appendices ix List of Abbreviations x CHAPTER ONE: INTRODUCTION 1 Thesis Overview 2 Prospective, End-of-Life Cases with an Incompetent Patient 5 End-of-life 6 Permanently, Terminally Incompetent and Unconscious 8 Best Interests 9 The Role of Autonomy in Decision-Making for the Incompetent Patient 10 Prospective Decisions 12 Common Law Jurisdiction 13 Some Further Considerations 14 CHAPTER TWO: BEST INTERESTS 16 An Introduction to Best Interests 17 Five Themes in Prospective, End-of-Life Cases 20 Complex Relationship Between Law and Ethics 21 Acknowledgement of Ethical Issues 23 Best Interests as a Multi-Faceted Concept 25 Value-laden and Inconsistent Use of Language 25 Differences in Outcome With the Same Reasoning 29 Ancillary Guidance 31 Inadequacy of Existing Law 35 Parens Patriae Jurisdiction 37 Guidance Principles: Best Interests and Substituted Judgment 38 Best Interests in Law 41 Summary of Chapter Two 50 CHAPTER THREE: EXPLORATION AND CATEGORISATION OF INTERESTS 52 Part One: Exploration of Interests 55 Dworkin 55 Experiential Interests 55 Critical Interests 56 iv Feinberg 61 Welfare and Ulterior Interests 61 Want-Regarding and Ideal-Regarding Interpretations of Interests 63 Interests of Others 64 Surviving Interests 65 Sperling 66 Life Interests 66 After-Life Interests 67 Far-Lifelong Interests 69 Summary of Part One 70 Part Two: A Framework for the Interests of Incompetent Patients 71 A Proposal for Categorising Interests 71 Self-Regarding Interests 72 The Self, Not Selfish 72 Experiential interests 73 Non-Experiential Interests 73 Other-Regarding Interests 76 Whānau 78 Community 84 An Overlap of Interests 88 Way Family Remember You 88 Family’s Views Respected 89 Taxonomy of Interests 92 Summary of Chapter Three 93 CHAPTER FOUR: DISTINGUISHING BETWEEN DIFFERENT INCOMPETENT PATIENTS 95 Part One: The Concepts of Competence and Incompetence 96 Informed Consent 97 Competence and Capacity 98 Components Needed for Competence 100 Capacity to Understand, Reason and Communicate a Decision 102 Possession of a Set of Values 104 Summary of Part One 106 Part Two: Interests and the Relationship with Prior Competence 107 Permanently Incompetent Patients 107 Previously Competent 108 Never Competent 117 Summary of Chapter Four 118 v CHAPTER FIVE: PRIOR VIEWS OF THE PERMANENTLY INCOMPETENT ADULT 120 Part One: The Importance and Veracity of Prior Views 121 The Significance Problem 122 Respect for Autonomy 122 The Individual Patient 125 Statutory Guidance 126 The Conflict Problem 127 The Patient with Current Views 127 The Epistemic Problem 128 Expectations Regarding Prior Views 130 Ascertaining Authenticity of Prior Views 132 Summary of Part One 139 Part Two: Case Analyses 140 Cases With No Clearly Expressed Prior View 141 Inferred-General Cases 144 Inferred-Specific Cases 148 The Previous Self in End-of-Life Cases 150 Cases With Explicitly Expressed Prior Views 152 Explicit-General Cases 152 Explicit-Specific Cases 158 Summary of Chapter Five 165 CHAPTER SIX: NARROW APPLICATIONS OF BEST INTERESTS 168 Possible Interpretations of Best Interests 169 Application One: Only Experiential Interests Matter 170 What Does it Mean to be a Person? 172 Definitions of Personhood 174 The Opposition of the Mind and Body 176 Application Two: Deferment to a Medicalised View 181 Bolamising Best Interests 182 Medicalising Best Interests 184 Application Three: Objective and Subjective Test 185 Best Interests as an Objective Test 187 The ‘Reasonable Person’ 188 Best Interests as a Qualified-Objective Test 190 Summary of Chapter Six 191 vi CHAPTER SEVEN: CONFLICTING AND CONFLUENT INTERESTS 193 Conflicting Interests 195 Sanctity of Life and Quality of Life 196 Experiencing a Quality Life 200 Twin vs Twin 202 Jodie’s Best Interests 204 Mary’s Best Interests 207 Parental Views and Child’s Interests 210 Prior Views and Other Interests 215 Experiential 216 Non-Experiential 222 Other-Regarding Interests 226 Other-Regarding Interests of the Previously Competent 226 Other-Regarding Interests of the Not Previously Competent 228 Summary of Chapter Seven 230 CHAPTER EIGHT: CONCLUSIONS AND RECOMMENDATIONS 233 Proposal for Weighting of Interests 237 Sensate with a Prior Self 240 Sensate with no Prior Self 241 Non-Sensate with Prior Self 242 Non-Sensate with no Prior Self 242 Deciding in the Best Interests of Incompetent Patients 242 APPENDIX ONE: TABLE OF CASES 244 APPENDIX TWO: CHART OUTLINING REASONING 260 APPENDIX THREE: PRÉCIS OF CASES 263 New Zealand Case Law 263 Australia Case Law 265 Canada Case Law 267 England and Wales Case Law 275 ACKNOWLEDGMENTS 286 BIBLIOGRAPHY 288 vii List of Tables Table 1: Four Categories of Views 136 Table 2 Proposal for Weighting of Interests 238 viii List of Appendices Appendix One: Table of Cases 244 Appendix Two: Chart Outlining Reasoning 260 Appendix Three: Précis of Cases 263 ix List of Abbreviations ANH Artificial Nutrition and Hydration ACT Australian Capital Territory CPR Cardiopulmonary Resuscitation CCB Consent and Capacity Board, Ontario CRPD Convention on the Rights of Persons with Disabilities GAA (Qld) Guardianship and Administration Act 2000, Queensland The Code of Patient Rights The Health and Disability Commissioner Code of Health and Disability Services Consumers’ Rights Regulation 1996 HCCA Health Care Consent Act 1996, Ontario MCA Mental Capacity Act, 2005, England and Wales MCS Minimally Conscious State NHS National Health Service, United Kingdom NSW New South Wales PEG tube Percutaneous Endoscopic Gastrostomy tube PVS Persistent Vegetative State PPPR The Protection of Personal and Property Rights Act 1988, New Zealand x CHAPTER ONE: INTRODUCTION “The time has come to redirect the focus of bioethics toward the problem of the incompetent patient.” 1 Anne Blythe was 58 years old when she suffered a devastating medical event that changed her life irrevocably. She had lived what she considered to be a good life, had a husband and three children to whom she was close. Whilst the doctors saved her life after the initial trauma, afterwards she showed no signs of comprehension or deliberate movement. She was then put on various life supports, including ventilation and artificial nutrition and hydration (ANH) to keep her alive. Eventually she was able to breathe unassisted. Her loving family were convinced that she was improving, that they could see her respond to their voices and their touch. But her medical carers told them no, she is not able to respond to anything, it is just spontaneous movement. They gently told the Blythe family that Anne was effectively ‘gone’ and that, to give her a dignified death, ANH should be removed, or if that was not acceptable to the family then if Anne got an infection she should not be treated with antibiotics. Anne’s family refused to consent to this treatment plan. They said “Anne would not give up at this stage and neither are we”. Anne had left no document behind that had set out her wishes should something like this happen to her. There were many family conferences, many medical opinions sought, much attempt at persuasion by the doctors, who did not want to prolong Anne’s life needlessly. The doctors were convinced that it was in Anne’s best interests for treatment to be withdrawn or withheld, just as Anne’s family were convinced it was in her best interests to continue treatment. They had reached an impasse, and eventually the only way forward was to seek an answer from the only institution who could provide a declaration as to which treatment options were in Anne’s best interests – the courts.