NAVIGATING CONFLICTS ABOUT LIFE- SUSTAINING TREATMENT IN A HEALTH SYSTEM WITH LIMITED RESOURCES: RECONCILING LAW, POLICY AND PRACTICE Eliana Close BSc (First Class Hons), MA Submitted in fulfilment of the requirements for the degree of Doctor of Philosophy School of Law, Faculty of Law Queensland University of Technology 2020 KEYWORDS Conflict resolution – distributive justice – life-sustaining medical treatment – end-of-life law – end-of-life policy – futile treatment – medical ethics – non-beneficial treatment – procedural fairness – rationing – resource allocation – shared decision making – transparency – treatment disputes – withholding of treatment – withdrawal of treatment i ABSTRACT This thesis by published papers examines the legal and ethical issues that arise when doctors make decisions about whether or not to provide life-sustaining treatment to adult patients who are critically ill. Approximately 30% of Australians die after a decision to withhold or withdraw life-sustaining treatment, including mechanical ventilation, cardiopulmonary resuscitation, dialysis and artificial nutrition and hydration. Often these decisions are straightforward. However, when a patient or substitute decision maker seeks treatment that doctors believe is ‘non-beneficial’, ‘potentially inappropriate’ or ‘futile’, the situation is more complex. How is benefit defined and who decides what is in the patient’s interests? What role do scarce resources play in doctors’ decisions? Does the concept of ‘futility’ operate as a mask for bedside rationing? While significant literature has addressed the concept of ‘futility’ in end-of-life decisions, the tensions between patient interests and scarce resources and how the Australian regulatory system responds to them remain unexplored. The central aim of this thesis is to determine whether the current regulatory mechanisms that govern, or purport to govern, decisions about life-sustaining treatment in Australia adequately promote transparent and procedurally-fair decision making and conflict resolution, or whether an alternative regulatory response is needed. This issue is examined from a number of perspectives in a series of six publications. The thesis combines an analysis of laws and policies with a qualitative study of doctors’ perceptions, to situate the regulatory critique within what occurs in practice. As a whole, this thesis reaches two primary conclusions. First, doctors perceive that resource considerations can impact end-of-life decision making (sometimes under the guise of ‘futility’) and this creates ethical tensions that should be addressed by the regulatory system. Second, existing laws and professional guidance about life-sustaining treatment in Australia do not sufficiently promote transparent and procedurally-fair decisions. To address these conclusions, an improved regulatory framework is needed to better distinguish between patient interests and distributive justice as two distinct non-treatment rationales. On the legal front, this thesis argues that a new legal framework is needed to shift decision making power to patients and families, while also promoting the development of explicit resource allocation policies that doctors can rely on when treatment is extremely unlikely to work. On the policy front, the thesis contends that the Australian regulatory system would be improved by an ii overarching policy on decisions about life-sustaining treatment to promote consistent terminology and guidance about decision making and dispute resolution. To achieve this, engagement with a broad cohort of stakeholders is necessary, including medical professionals, lawyers, patients, families and the community. iii TABLE OF CONTENTS Keywords .................................................................................................................................. i Abstract .................................................................................................................................... ii Table of Contents .................................................................................................................... iv Original and Significant Contributions to Knowledge............................................................ vi List of Publications ................................................................................................................ vii Statement of Original Authorship ......................................................................................... viii Acknowledgements ................................................................................................................. ix A Note on the Thesis ............................................................................................................... xi Chapter 1: Introduction .......................................................................................2 1.1 Focusing on Conflicts About Life-Sustaining Treatment ...............................................2 1.2 Aims of the Thesis ..........................................................................................................6 1.3 Objectives of the Thesis: How the Aims Will be Achieved ...........................................7 1.4 Structure of the Thesis ..................................................................................................10 1.5 Linking the Publications ...............................................................................................12 1.6 Connection Between the Publications and the Thesis Objectives ................................24 1.7 Key Concepts ................................................................................................................28 1.8 Methodological Approach ............................................................................................37 1.9 Scope ............................................................................................................................41 1.10 Significant and Original Contributions to Knowledge .................................................45 1.11 Conclusion ....................................................................................................................48 Chapter 2: Review of the Literature and Current Law ..................................49 2.1 Introduction ..................................................................................................................49 2.2 The Medical Context: Withholding and Withdrawing Life-Sustaining Treatment ......50 2.3 The Healthcare System Context: A Backdrop of Scarce Resources .............................59 2.4 Ethical Rationales for Non-Treatment Decisions .........................................................62 2.5 Law on Withholding or Withdrawing Futile Treatment ...............................................68 2.6 Critique of the Law .......................................................................................................78 2.7 Medical Policies on Withholding and Withdrawing Life-Sustaining Treatment .........80 2.8 Summary of Gaps in the Literature ..............................................................................82 2.9 Conclusion ....................................................................................................................83 Chapter 3: Futile or ‘Disputed’ Treatment Chapter .......................................85 Chapter 4: Doctors’ Perceptions of Practice Paper .........................................86 Chapter 5: Charlie Gard Paper .........................................................................88 Chapter 6: Critique of Legal Models Chapter .................................................94 iv Chapter 7: Medical Futility Policy Analysis...................................................121 Chapter 8: Balancing Patient and Societal Interests Policy Analysis ..........159 Chapter 9: Conclusion ......................................................................................188 9.1 Introduction ................................................................................................................188 9.2 Cumulative Effect of the Publications ........................................................................189 9.3 Synthesis of Recommendations ..................................................................................202 9.4 Significance of Findings .............................................................................................208 9.5 Directions for Future Research ...................................................................................209 9.6 Concluding Comments ...............................................................................................211 Appendix A – Statements of Contribution ...........................................................213 Bibliography ............................................................................................................223 v ORIGINAL AND SIGNIFICANT CONTRIBUTIONS TO KNOWLEDGE This thesis makes an original and significant contribution to knowledge in the following ways: 1. It critically evaluates the concept of futility as a basis for decisions about life- sustaining treatment and identifies concerns about transparency and procedural fairness relating to both patient and society; 2. It provides the first empirical analysis to investigate doctors’ perceptions of the relationship between futility and resource constraints in practice, providing evidence that resource allocation considerations influence end-of-life