Regulating the End of Life

Death Rights

Sue Westwood, Sue Westwood

• Publisher: Routledge
• Year: 2021
• ISBN:
  9781000439496
• Edition: 1
• Topic: Derecho
• Subtopic: Teoría y práctica del derecho

Regulating the End of Life: Death Rights is a collection of cutting-edge chapters on assisted dying and euthanasia, written by leading authors in the field.

Providing an overview of current regulation on assisted dying and euthanasia, both in the UK and internationally, this book also addresses the associated debates on ethical, moral, and rights issues. It considers whether, just as there is a right to life, there should also be a right to death, especially in the context of unbearable human suffering. The unintended consequences of prohibitions on assisted dying and euthanasia are explored, and the argument put forward that knowing one can choose when and how one dies can be life-extending, rather than life-limiting. Key critiques from feminist and disability studies are addressed. The overarching theme of the collection is that death is an embodied right which we should be entitled to exercise, with appropriate safeguards, as and when we choose.

Making a novel contribution to the debate on assisted dying, this interdisciplinary book will appeal to those with relevant interests in law, socio-legal studies, applied ethics, medical ethics, politics, philosophy, and sociology.

1 Introducing ‘Regulating the End of Life: Death Rights’

Sue Westwood

DOI: 10.4324/9780429329739-1

Overview

This edited volume engages with, and advocates for, the ‘right to die’ in law. The volume is multi-disciplinary, with contributions from authors from a wide range of backgrounds, including law, socio-legal studies, applied ethics, medical ethics, bioethics, embodied rights, human rights, disability rights, gender studies, feminism, gerontology, politics, philosophy, sociology and vulnerability theory. It is a cutting-edge volume, combining the best of recent debates with new and incisive critical contributions, aimed at progressing the assisted dying and euthanasia debate further forward. This introductory chapter places these contributions in context, offers guidance about how the book can be approached, and provides an outline of each of the chapters and related themes.

Context

Although ending one’s life is no longer a crime in many parts of the world, including the UK,¹ assisting someone else to do so still is. This is despite growing support among both the general public (Hendry et al., 2013) and the medical professions (Davis, 2018) and a series of poignant legal challenges in recent years, including, in the UK, those made by Diane Pretty,² Debbie Purdy,³ Tony Nicklinson,⁴ and, most recently, Noel Conway.⁵ Several attempts to introduce new legislation to the UK Parliament have been unsuccessful, for example the Assisted Suicide (Scotland) Bill (2013), Lord Falconer’s Assisted Dying Bill (2014) and Rob Marris’s Assisted Dying Bill (2015).

The debate about assisted dying and euthanasia (Lewis, 2007) has engaged internationally with many moral and ethical tensions (Huxtable, 2007, 2012), very few of which, however, have questioned why death and dying are regulated in the way that they are (Tierney, 2010). Why, for example, should we have to accept passive deaths, rather than deaths in the manner and timing of our choosing? Why do we have a right to life, but not a right to death, even in the face of unbearable suffering? Why do we have embodied reproductive rights, to control the beginnings of life, but not embodied death rights to control the endings of life?

This edited volume aims to review and engage with the various debates about assisted dying and euthanasia, and offer new and cutting-edge critiques. It is explicitly in favour of legalising assisted dying and euthanasia (with appropriate safeguards) and moreover of establishing a ‘right to die’ in law (Coggon, 2006), which would be on a par with a ‘right to life’.

How this book can be used

This book can be used in several ways.

• Those who are interested in the broad content can do a straightforward ‘begin at the beginning’ and work their way through.
• Those who are interested in particular themes may wish instead to delve first into specific sections. Part 1 addresses regulatory contexts; Part 2 addresses ethics, morals and values; Part 3 addresses rights; and in Part 4, I take an overview approach, tying all of the chapters together under an overarching claim for the right to die.
• The book includes chapters which take very different approaches. Readers interested in more abstract analyses may be drawn in particular to the chapters by Penney Lewis (Chapter 2), Isra Black (Chapter 7) and Thomas Tierney (Chapter 10). Readers more interested in lived experience may wish to focus on chapters by Alex Ruck Keene (Chapter 3), Ari Gandsman (Chapter 11) and Els van Wijngaarden (Chapter 12) as well as, perhaps, my own final overview chapter (Chapter 14), which asks what an ‘outsider’ perspective (through the eyes of hypothetical aliens) can offer to the ‘right to die’ debate. Readers interested in particular countries’ regulatory approaches will wish to consider Penney Lewis’s overview in Chapter 2; Chapters 3 and 5 for an analysis of the English context; Chapter 4 which relates to Australia; Chapters 10 and 11 which come from the US; Chapter 12 which relates to the Netherlands; and Chapters 9 and 10 which relate to a European context, particularly to the European Convention on Human Rights.
• For those who wish to engage with all authors’ approaches to particular sub-topics, the Index will guide them to the relevant sections. Alternatively, readers can just dip in and out according to their needs/interests.

Definition of terms

Assisted dying is an umbrella term that encompasses voluntary euthanasia, physician-assisted suicide and assisted suicide. In voluntary euthanasia, a person’s life is ended for them, at their request. This is distinguishable from involuntary euthanasia where a person’s life is ended without their consent or wish. Physician-assisted suicide is where a person is helped to end their own lives by a medical practitioner. Assisted suicide is where a person is helped to end their own lives by someone who is not a medical practitioner. Some authors avoid the term suicide for its association with criminalisation. For example, it was unlawful to end one’s life in the UK prior to the 1961 Suicide Act, and until then, people who tried to end their lives and failed were liable to criminal prosecution. For those who wish to avoid referring to ending one’s life as ‘suicide’, ‘assisted suicide’ can also be referred to as ‘assisted dying’ (whether physician assisted or not).

The nature of the assistance can be passive, that is, to not do things which would keep the person alive (e.g. to not conduct CPR on someone whose heart has stopped) or active, either by stopping doing things which are keeping the person alive (e.g. removing feeding tubes) or by doing something which will actively bring about someone’s death (e.g. providing or administering poisons). Very often the lines between all three can become blurred (see Chapter 7 which goes into this in more detail).

Chapter outlines

This volume is clustered around four main themes: legal changes and challenges; ethics, morals and values; rights claims; and transgressions.

Part 1: Legal change and challenges

In Chapter 2, Penney Lewis, a leading UK academic and now a law commissioner (the Law Commission being responsible for reviewing and proposing reforms to the law of England and Wales), reflects on her landmark book, Assisted Dying and Legal Change (Lewis, 2007). In that book, she explored how different regulatory systems in different countries inform legal responses to assisted dying. In this chapter, she considers certain legal routes in light of subsequent legal developments and suggests that one jurisdiction’s approach may not be simply transferable to another’s without taking the wider socio-legal context into account. Lewis first examines constitutionally entrenched human rights (focussing on legal systems in Canada sand Colombia). She then goes on to consider statutory interpretations of both the duty-based defence of necessity (focussing on the Netherlands) and the defence of medical exception (in multiple countries). She then explores legislative approaches, that is, restrictions on assisted dying to those with a terminal illness (focussing on Washington and Oregon in the US) and use of the rationale of unbearable suffering in cases of euthanasia (considering the Belgium context).

Lewis then goes on to examine and re-evaluate both the claims she makes in her 2007 book and newer claims about the significance of the following for each regulatory approach: the patient’s request; the patient’s condition, whether related to a terminal illness or unbearable suffering; the type of assistance; prospective approval and retrospective assessment; and the identity of the assistor. Lewis’s rich, layered analysis gives a remarkable overview of different legal approaches to assisted dying in different parts of the world, and the legal frameworks that shape them. It also, rarely, demonstrates a leading academic revisiting and reviewing their original work and updating it for contemporary applicability, relevance and salience.

Often, debates about assisted dying can involve complex theory and abstract ideas which take us away from the lived experience that is involved. In Chapter 3, Alex Ruck Keene, a leading practicing English barrister, who is also an academic, reflects on his experience of representing Neil Conway’s unsuccessful legal claim to be allowed to be helped to die. Neil Conway’s is one of the most recent UK cases where an individual has been denied the right to die. Ruck Keene’s reflections on the case – written with Neil Conway’s express permission – reminds us of the human consequences of being denied the right to die. Such cases have a profound impact on a human being whose life either has become unbearable and/or faces an unwanted manner of dying in the case of a progressive terminal illness. These cases involve the most courageous human beings involved in the most awful tragedies. Not only do they affect the claimants and those who care about and support them, but they also affect the legal teams who are involved, particularly those representing the claimant themselves.

As Ruck Keene’s chapter shows, being involved in assisted dying litigation is much more than just doing a day’s work, with barristers such as Ruck Keene caring deeply about their clients’ plights and about their thwarted attempts to be allowed to die. He considers how the court’s ruling in Neil Conway’s case is in conflict with core principles in English law, notably embodied autonomy, choice and control; the privileging of medical judgement over self-determination; ‘best interests’ decision-making (the foundation of English mental capacity law); proportionality, that is, taking the least intrusive measure(s) to achieve legitimate goals; and certain basic human rights principles exemplified in the European Convention on Human Rights. Ruck Keene reflects, in particular, on the UN Convention on the Rights of Persons with Disabilities (CPRD), its vagueness in relation to assisted dying, and therefore its limited applicability when trying to use it to make disability rights claims in relation to assisted dying in the courts. Crucially, Ruck Keene considers not only the social right to some things but also ‘not to’ others. This is of particular significance in the context of unbearable suffering and what he calls the ‘untidy compromises’ being made in relation to the present English stance on assisted dying.

Comparative international perspectives offer useful insights. In Chapter 4, Lindy Willmott, Katrine Del Villar and Ben White examine recent assisted dying legislation in Victoria, Australia, to consider to what extent and how it lines up with certain core values. The ‘values’ (or principles) they consider are the importance of life, autonomy, freedom of conscience, equality, the rule of law, the protection of vulnerable people and the minimisation of human suffering. After outlining each, the authors then go on to apply these concepts to key elements of the new legislation, specifically the permitted method of delivery of assisted dying; eligibility criteria for assisted dying; safeguards and restrictions; monitoring and oversight; and medical practitioners and lawful conscientious objections.

Applying the lens of values to these various dimensions of...