International Perspectives on End-of-Life Law Reform: Politics, Persuasion and Persistence (Cambridge Bioethics and Law)

Much has been written about whether end-of-life law should change and what that law should be. However, the barriers and facilitators of such changes – law reform perspectives – have been virtually ignored. Why do so many attempts to change the law fail but others are successful? International Perspectives on End-of-Life Law Reform aims to address this question by drawing on ten case studies of end-of-life law reform from the United Kingdom, the United States, Canada, the Netherlands, Belgium and Australia. Written by leading end-of-life scholars, the book's chapters blend perspectives from law, medicine, bioethics and sociology to examine sustained reform efforts to permit assisted dying and change the law about withholding and withdrawing life-sustaining treatment. Findings from this book shed light not only on changing end-of-life law, but provide insight more generally into how and why law reform succeeds in complex and controversial social policy areas. Cover Half-title Series information Title page Copyright information Contents Preface About the Editors List of Contributors Table of Cases Table of Statutes, Bills and Regulations 1 End-of-Life Law Reform: Context and Challenges Introduction What Is End-of-Life Law? Assisted Dying Withholding or Withdrawing Potentially Life-Sustaining Treatment Palliative Care Other End-of-Life Practices Concluding Thoughts on End-of-Life Law The Challenges of End-of-Life Law Reform The Goal of This Book 2 The Path from Rodriguez to Bill C-14 and Beyond: Lessons about MAiD Law Reform from Canada Introduction From Rodriguez to Bill C-14 Litigation Strategy When to Litigate How to Use Social Science and Humanities Research Consultation Confusion Controversy Litigation Legislative Drafting Ambiguity Unforeseen/Unintended Consequences Staged Reform Legislative vs. Judicial Path From Bill C-14 to BILL C-7 Litigation Strategy Consultation Legislative Drafting Staged Reform Legislative vs. Judicial Path Conclusions Appendix: Chronology 3 The Extension of the Belgian Euthanasia Law to Minors in 2014 Introduction Terminology The 2002 Law on Euthanasia The Legislative Process The Criteria of Due Care Conditions of the Euthanasia Request Medical Condition of the Patient Procedural Requirements Societal Control (Reporting and Reviewing Euthanasia Cases) The Content and Use of the 2014 Extension Minors with the 'Capacity for Discernment' The Differences between Euthanasia for Adults and Euthanasia for Non-emancipated Minors The Practice of Euthanasia for Minors 2014-2019 Overview of the Legislative Process Potential Catalysts for Reform Legislative Process Reception and Judgement by the Constitutional Court on the Amendment Key Arguments Raised in the Debate Congruence with the Law Concerning Rights of Patients Practice Competence and Capacity for Discernment Concluding Remarks 4 The Role of Scientific Evaluations of the Dutch Termination of Life on Request and Assisted Suicide (Review Procedure) Act: Old Law, New Boundaries Introduction The Evolving Regulation of Euthanasia and Physician-Assisted Suicide The Dutch Termination of Life on Request and Assisted Suicide (Review Procedures) Act Evaluation Studies The First Evaluation Study 2005-2006 The Second Evaluation Study 2010-2011 The Third Evaluation Study 2015-2016 Legal Study Clinical Practices Study The Review Procedure Study Recommendations from the Third Evaluation Study Conclusion 5 The Challenging Path to Voluntary Assisted Dying Law Reform in Australia: Victoria as a Successful Case Study Introduction Brief History of Australian Experience The Victorian Law Reform Process Parliamentary Committee Inquiry into End-of-Life Choices (7 May 2015-9 June 2016) Committee's Report (9 June 2016) Victorian Government's Response to the Report (8 December 2016) Ministerial Advisory Panel (December 2016-21 July 2017) Enactment of the Voluntary Assisted Dying Act 2017 (Vic) (20 September-29 November 2017) Analysis of Victoria's VAD Reform Process Government-Supported Reform Process and Bill Two-Staged Review Extensive Consultation Membership of the Parliamentary Committee and the Ministerial Advisory Panel Nature of the Reports of the Parliamentary Committee and Ministerial Advisory Panel Concluding Observations about Victorian VAD Law Reform 6 Should Assisted Dying Require the Consent of a High Court Judge? Introduction Existing Regulatory Regimes Retrospective Scrutiny Prospective Scrutiny Consultation Approval by a Civil Servant, Regulatory Body, Panel or Tribunal Approval by a Court Calls for Prospective Approval Canada United Kingdom Would a Prospective Judicial Approval Requirement Meet the Regulatory Goals? The Typical Condition of a Patient Who Requests Assistance in Dying Respecting Autonomy Protecting the Vulnerable Compassionate Response to Unbearable Suffering Conclusion 7 Aid in Dying in the United States: Past, Present and Future Introduction Aid in Dying in the United States The Right to Aid in Dying and Its Underlying Moral Principles Evolution of the Right to Refuse Life-Sustaining Treatment Evolution of the Law for Aid in Dying Rejecting Alternative Explanations for the Distinction between Treatment Withdrawal and Aid in Dying The Timeline for the Adoption of Aid-in-Dying Laws Future of Aid in Dying in the United States Conclusion Postscript 8 The Medical Regulator as Law Reformer: Québec's Act Respecting End-of-Life Care Introduction Chronology of Key Events in Québec and Canada Québec Canada Collège des Médecins du Québec ('CMQ') The Medical Regulator in Québec The CMQ's Working Group on Clinical Ethics An Act Respecting End-of-Life Care Lessons for Law Reform Appendix: Chronology 9 Extrajudicial Resolution of Medical Futility Disputes: Key Factors in Establishing and Dismantling the Texas Advance Directives Act Introduction The Texas Advance Directives Act Provides a Unique Dispute Resolution Mechanism for Conflicts over Life-Sustaining Treatment The Attending Physician Refers the Dispute to a Review Committee The Hospital Provides the Surrogate with Notice of Committee Review The Review Committee Holds an Open Meeting The Review Committee Makes Its Decision and Provides a Written Explanation The Hospital Attempts to Transfer the Patient to a Willing Facility The Hospital May Stop Life-Sustaining Treatment Summary of the TADA Dispute Resolution Process Five Key Factors Enabled the Enactment of TADA in 1999 Enabling Factor One: An Exceptionally Broad Stakeholder Consensus Supported TADA Enabling Factor Two: TADA's Dispute Resolution Provisions Were Only a Small Part of a Much Broader Bill Enabling Factor Three: Would-Be Opponents Were Willing to Compromise Because the Status Quo Presented Even Greater Risk Enabling Factor Four: Would-Be Opponents Thought that the Transfer Mechanism Would Work and that Hospitals Would Never Stop Desired Treatment Enabling Factor Five: Lawmakers Used to Trust Physicians and Hospitals to Adjudicate Treatment Disputes Lawmakers Have Partially Dismantled TADA Since 2015 2015: TADA No Longer Applies to Artificial Nutrition and Hydration 2017: TADA No Longer Applies to Many DNR Orders 2019-2021: Texas Courts Weigh TADA's Constitutionality Factors Enabling Judicial and Legislative Attacks on TADA Factor One: TADA Violates Constitutional Procedural Due Process Requirements Factor Two: TADA Lacks a Systematic Data Collection and Reporting Mechanism Conclusion Postscript 10 Challenging Mandatory Court Hearings for People in Vegetative and Minimally Conscious States: How to Change the Law Introduction Diagnostic Terminology The Supreme Court Judgement in Re Y 'The Law' Prior to the Supreme Court Decision Legal Arguments Developed to Challenge This 'Law' Developing and Deploying Research Showing the Need for Legal Reform Generating the Evidence Base Advocacy for Reform Traditional Academic Dissemination Broader Dissemination outside Academia Creation of Targeted Events for Dissemination The CDOC Practice Direction 9E Working Party After the Supreme Court Decision Outcomes of the Decision Our Reflections on Our Role(s) Strategies for Reform 11 Withholding and Withdrawing Life-Prolonging Treatment and the Relevance of Patients' Wishes: Reforming the Mental Capacity Act 2005 Introduction From Bolam to a Presumption of Primacy Presumptions versus Judicial Discretion Law Reform Conclusion and Unresolved Questions 12 International Perspectives on Reforming End-of-Life Law Introduction Conceptualising Law Reform Law Reform Can Occur through Different Regulatory Paths Law Reform Is More Likely to Succeed with 'Good Process' Law Reform Often Requires Compromise Law Reform Is Increasingly Dependent on Evidence An Environment Conducive to Law Reform Critical Evaluation of Law Reform and Proposed Law Reform Is Important Law Reform Efforts Are Ongoing Design of Law Is Challenging Limits of a Case Study Approach: What Is Missing? Future of End-of-Life Law Reform Index End-of-life Law Reform : Context And Challenges / Ben P. White And Lindy Willmott -- The Path From Rodriguez To Bill C-14 And Beyond : Lessons About Maid Law Reform From Canada / Jocelyn Downie And Kate Scallion -- The Extension Of The Belgian Euthanasia Law To Minors In 2014 / Kasper Raus, Luc Deliens, And Kenneth Chambaere -- The Role Of Scientific Evaluations Of The Dutch Termination Of Life On Request And Assisted Suicide (review Procedure) Act : Old Law, New Boundaries / Agnes Van Der Heide, Johan Legemaate, Johannes (hans) J. M. Van Delden, And Bregje Onwuteaka-philipsen -- The Challenging Path To Voluntary Assisted Dying Law Reform In Australia : Victoria As A Successful Case Study / Lindy Willmott And Ben P. White -- Should Assisted Dying Require The Consent Of A High Court Judge? / Penney Lewis -- Aid In Dying In The United States : Past, Present And Future / David Orentlicher -- The Medical Regulator As Law Reformer : Quebec's Act Respecting End-of-life Care / Mona Gupta -- Extrajudicial Resolution Of Medical Futility Disputes : Key Factors In Establishing And Dismantling The Texas Advance Directives Act / Thaddeus Mason Pope -- Challenging Mandatory Court Hearings For People In Vegetative And Minimally Conscious States : How To Change The Law / Celia Kitzinger And Jenny Kitzinger -- Withholding And Withdrawing Life-prolonging Treatment And The Relevance Of Patients' Wishes : Reforming The Mental Capacity Act 2005 / Emily Jackson -- International Perspectives On Reforming End-of-life Law / Ben P. White, Lindy Willmott, Jocelyn Downie, Penney Lewis, Celia Kitzinger, Jenny Kitzinger, Kenneth Chambaere, Thaddeus Mason Pope, Luc Deliens, Mona Gupta, Emily Jackson, Agnes Van Der Heide, Eliana Close, Katrine Del Villar, And Jodhi Rutherford. Edited By Ben P. White, Lindy Willmott. Includes Bibliographical References And Index. Electronic Reproduction. Cambridge Available Via World Wide Web. "However, the barriers and facilitators of such changes - law reform perspectives - have been virtually ignored. Why do so many attempts to change the law fail but others are successful? International Perspectives on End-of-Life Law Reform aims to address this question by drawing on ten case studies of end-of-life law reform from the United Kingdom, the United States, Canada, the Netherlands, Belgium and Australia. Written by leading end-of-life scholars, the book's chapters blend perspectives from law, medicine, bioethics and sociology to examine sustained reform efforts to permit assisted dying and change the law about withholding and withdrawing life-sustaining treatment. Findings from this book not only shed light on changing end-of-life law but also provide insight more generally into how and why law reform succeeds in complex and controversial social policy areas"-- Provided by publisher "However, the barriers and facilitators of such changes - law reform perspectives - have been virtually ignored. Why do so many attempts to change the law fail but others are successful? This book aims to address this question by drawing on ten case studies of end-of-life law reform from the United Kingdom, the United States, Canada, the Netherlands, Belgium, and Australia. Written by scholars, the book's chapters blend perspectives from law, medicine, bioethics, and sociology to examine sustained reform efforts to permit assisted dying and change the law about withholding and withdrawing life-sustaining treatment. Findings from this book not only shed light on changing end-of-life law but also provide insight more generally into how and why law reform succeeds in complex and controversial social policy areas"-- Provided by the publisher This interdisciplinary analysis will appeal to those in the fields of law, health and medicine, bioethics, regulation and political science, as well as those working in parliaments and government bodies with responsibility for reform, non-government organisations, advocacy groups and civil society groups engaged in reform debates.