Death, Dying and Discontent: Law’s Imperfect Governance
It is no surprise that law’s governance, even if it commits to nothing more than ‘order’, is imperfect. The legal enterprise, as a human enterprise, reflects the imperfections of humans; and its reliance on rules as its principal instruments of governance means that compliance is neither mechanical nor guaranteed. Where law commits to more than order and the justice of governance by rules, the stresses are increased and further imperfections will become apparent.
It is also no surprise that law’s imperfections provoke discontent. While some discontent is voiced by legal professionals who bemoan the quantity, quality, unconstitutionality, or unintended effects of legislation, much of it is experienced by members of the public who are frustrated by the poor performance of law, or by the positions it takes, or by miscarriages of justice, or by problems with access to justice and the like.
In this paper, I will focus on discontent with law’s governance of death and dying, where there is a commitment to just and democratic order and where the community is divided on the key ethical issues. In the UK, those who argue for the permissibility of assisted dying will be disappointed by decisions that go against them in Parliament and the courts; but, is it reasonable to escalate such disappointment to discontent with law’s governance?
Responding to this question, I will consider whether it is reasonable to do so if we believe (i) that it is morally wrong to prohibit assisted suicide, or (ii) that the law is incompatible with fundamental values in the UK, or (iii) that the law is incoherent (doctrinally, or relative to the generic conditions of agency).
Roger Brownsword has professorial positions in Law at King’s College London and at Bournemouth University. His many books and articles are known throughout the English-speaking world; and, he also has publications in Chinese, French, German, Italian, and Portuguese. His most recent books is Technology, Humans, and Discontent with the Law: the Quest for Better Governance (2024).
Assisted Dying: Slippery Slopes and Unintended Consequences
This paper will consider some oddities in debates over the legalisation of assisted dying. Slippery slope claims are common, but do they make sense? Are supporters and opponents of assisted dying talking about different people, with different concerns, when they argue over legalisation? Are there mismatches between what the law can achieve and what matters most to patients? And might there sometimes be unintended consequences, where we solve one problem but create another?
Emily Jackson is a Professor of Law at the London School of Economics and Political Science, where she teaches Medical Law. She is a Fellow of the British Academy, and was previously a Member and then Deputy Chair of the HFEA, and a Judicial Appointments Commissioner.
Assisted dying in Belgium in the 21st century: developments and complexities
More than 20 years after the legalisation of assisted dying on request in Belgium (local term used: euthanasia), practice is still evolving, along with the public, ethical and legal debate. This presentation will go over these evolutions to date, and will touch upon the pressure points of today and tomorrow. It will reflect on their meaning and significance in the context of the (ill-termed) 'slippery slope' hypothesis, and its many facets such as: adherence to legal safeguards, expansion of eligibility, impact on the vulnerable, suicide contagion. A case will also be made for systematic rigorous research to underpin earnest scrutiny of assisted dying practices, at the same time delineating its limits in providing clarity to feed into a continued balanced debate.
Prof. Kenneth Chambaere is Interdisciplinary Professor of Public Health, Sociology & Ethics of the End of Life at the End-of-Life Care Research Group. He obtained an MSc in Sociology in 2004 and a Postgraduate in Logic, History and Philosophy of Science in 2005, before obtaining a PhD in Medical-Social Sciences in 2010. From 2010 to 2016 he was a Postdoctoral Fellow of the Research Foundation Flanders (FWO), researching slippery slope phenomena in countries with assisted dying legislation. As part of the group’s Public Health research program, Prof. Chambaere’s current research focusses on three main themes: (1) end-of-life practices, (2) palliative care in and by the community and (3) end-of-life care for people in vulnerable positions. He conducts and is involved in projects on following topics: assisted dying/euthanasia; palliative sedation; palliative care and end-of-life decision-making in the perinatal period; tiredness of life in older people; Compassionate Communities; palliative home care for difficult-to-reach groups; volunteerism in palliative care provision; palliative day care models. To date he has published more than 110 international peer-reviewed papers and contributed several book chapters, including a chapter on the ethics of end-of-life practices in the Springer Textbook of Palliative Care.
Physician-assisted dying in the Netherlands: results of the 4th national evaluation study
The Dutch Termination of Life at Request and Assisted Suicide Review Act (Wtl) came into effect in 2002. The Act's objectives are to provide legal certainty to physicians who end a patient's life on this patient’s request, to guarantee the carefulness of that action, to provide an accountability framework for physicians and to promote social transparency. The legal regulation requires physicians to report the provision of euthanasia or assistance in suicide to the municipal coroner. The regional euthanasia review committees then assess whether the legal due care criteria have been met in the process.
The interpretation of the Wtl, its criteria and regulations in physicians’ practices of end-of-life decision making, are evaluated every five years by an independent multidisciplinary group of scientific researchers. The results of the fourth evaluation were published in 2023. The overall conclusion was that the objectives of the Wtl with regard to legal certainty for physicians, due care and transparency are achieved. However, the evaluation also showed that the debate on physicians’ role and responsibility in the practice of end-of-life decision making has not subsided in recent years. The first criminal prosecution of a physician since the Act came into force has certainly contributed to this debate.
In my presentation I will explain the regulation of physician-assistance in dying in the Netherlands, give an overview of the main results of the evaluation study, reflect upon the operation of the Wtl and discuss some challenges that were identified in the latest review.
Agnes van der Heide is professor in end-of-life care and decision making. She works as a researcher at the department of Public Health of Erasmus MC, University Medical Center Rotterdam, the Netherlands. Agnes has over 25 years of experience in end-of-life care research. She has been involved in many local, national and international studies on clinical, ethical, legal, organisational and societal aspects of end-of-life care and end-of-life decision making. She is one of the PI's of the Dutch series of nationwide end-of-life decision making studies that include scientific evaluations of the Dutch law on Medical Assistance in Dying. Further, she is a member of the executive board of the International Collaborative for Best care for the Dying Person. Agnes has co-authored over 300 papers in international peer-reviewed journals.
When Death Becomes Therapy: Canada’s Rapid Normalization of Health Care Provider Ending of Life
Trudo Lemmens, LicJur, LLM (bioethics), DCL, Professor and Scholl Chair in Health Law and Policy, Faculty of Law and Dalla Lana School of Public Health, University of Toronto
This presentation will explore the development of Canada’s euthanasia and assisted suicide law and practice, which became widely known under the odd acronym MAiD (Medical Assistance in Dying). I will explain how and why Canada’s MAiD practice has, in a very short period of time, gone beyond the most liberal euthanasia regimes in the world, in terms of numbers and scope of practice. A key and under-recognized reason, so I will put forward, is the remarkable failure to treat health-care provider induced death as a last resort option, in contrast with other liberal euthanasia regimes. The paper discusses how the rhetoric of a constitutional right to MAiD contributed to an over-emphasis, in law, professional guidance, and in practice, on the right to access death as therapy, rather than the right to protection against premature death. This resulted in a significant expansion of the law and practice, from one focused on more exceptional cases in a broad end-of-life context, to a quasi-universal therapy for (sometimes only remotely) illness and disability related suffering. This expansion, including an explicit expansion of the law, was pushed through even though it became clear that some were requesting and being approved for MAiD primarily because of socio-economic reasons. The paper further suggests that rights rhetoric has replaced engagement with evidence-informed clinical, policy, and ethics arguments in Canada. In conclusion, I will reflect on what we can learn from how Canada’s law and health professional practice embraced death as medical therapy.
Trudo Lemmens is Professor and Scholl Chair in Health Law and Policy at the Faculty of Law and the Dalla Lana School of Public Health of the University of Toronto. Professor Lemmens’ publications include the co-authored books Medical Law in Canada and Reading the Future? Legal and Ethical Challenges of Predictive Genetic Testing; the co-edited volumes Regulating Creation: The Law, Policy and Ethics of Assisted Human Reproduction, and Law and Ethics in Biomedical Research: Regulation, Conflict of Interest, and Liability; and numerous chapters and articles in leading national and international law, policy, science, medicine and bioethics journals. He was a member of the Council of Canadian Academies’ expert panel on Medical Assistance in Dying and testified as an expert witness for the federal Attorney General in the Truchon and Lamb cases. He has appeared before Canadian Parliamentary committees mandated to discuss draft legislation and the review of the practice. He has also been consulted as an expert on these issues internationally, including as witness for the UK House of Commons Health and Social Care Committee, a Jersey Citizen Jury, an Irish parliamentary committee; and a South African Human Rights Organization. As member of an expert committee for the Jersey Government, he co-authored a report on legal and ethical issues of different options of legalized Assisted Dying. He currently is a member of a MAiD Death Review Panel of Ontario’s Coroner Office and a member of an academic content committee for a Nuffield Council Project on Assisted Dying.
For more information: https://www.law.utoronto.ca/faculty-staff/full-time-faculty/trudo-lemmens
The moral universe of Muslim clinicians
In this paper, I will share findings from an empirical study that offers a thematic analysis of 76 interviews with Muslim doctors, nurses, allied health professionals, chaplains and community faith leaders across the UK, as well as patients and families. The data show that for many Muslim healthcare practitioners, Islam - its texts and lived practice – is of central importance when they are deliberating death and dying and end of life care decision-making. Central to these deliberations are virtues rooted within Islamic theology and ethics, the traditions of adab (virtue) and aqhlaq (proper conduct). Themes analysed include theological and moral understandings around what constitutes care and obligations at the end of life. The study provides an analysis of these themes in relation to the experiences of Muslim healthcare practitioners as they deliberate personal and professional moral commitments. The data show that the juxtaposition of different values and moral frameworks require careful negotiation when Muslim healthcare practitioners are caring for the dying. The study also describes how healthcare systems and training programmes lack deliberative mechanisms to support Muslim practitioners to work through competing moral frameworks and how to develop a coherent identity.
A senior researcher at the Ethox centre, University of Oxford, Mehrunisha is a medically trained bioethicist and public health researcher, whose research experience spans healthcare systems analysis to empirical ethics evaluation. Her research interests intersect global health research ethics and clinical ethics particularly where religious and cultural views and values of patients, clinicians and researchers are pertinent. She has extensive outreach and engagement experience, including working with minority groups and diverse sectors across the UK and globally.
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