Regulating the End of Life: Death Rights brings together 13 contributors to progress debates on assisted dying and euthanasia. The starting point is: ‘Although ending one's life is no longer a crime in many parts of the world, including the United Kingdom (UK), assisting someone else to do it still is’ (Chapter 1, p. 1). On this basis, the book advocates for the ‘right to die’ in law – specifically lawful assisted dying, with strict controls. The evidence is marshalled to build a powerful and lucid argument accessible to a wide range of readers, from those who have only nervously skimmed the issue, to legal and social policy specialists steeped in the complexities.
The book contains 14 chapters organised into four themes. In Chapter 1, the editor Sue Westwood lays out the rationale underpinning the key themes – legal changes and challenges; ethics, morals and values; rights claims; and transgressions. There's even an item on ‘how this book can be used’ by different readers who may be seeking a broad overview, insights into different regulatory approaches, accounts of lived experience, or abstract analyses.
The first section starts with an overview in Chapter 2 from the UK law commissioner Penney Lewis on different legal responses to assisted dying. This is followed by reflections by the UK barrister Alex Ruck Keene on the ‘untidy compromises’ in law that thwarted his efforts to enable one particular client, Noel Conway, to be allowed to be helped to die. In Chapter 4, Lindy Willmott, Katrine Del Villar and Ben P. White assess the voluntary assisted dying legislation introduced in the Australian state of Victoria in 2019 and suggest a set of core values to use to make it less prescriptive.
The second section considers ethics, morals and values, starting with a chapter by the medical ethicist Richard Huxtable on how to balance opposing positions with a middle-ground compromise. Suggestions include legalising assisted dying in limited circumstances, such as someone with a terminal illness in the last six months of life, and developing a new offence of ‘compassionate killing’ with non-custodial penalties attached. The UK bioethicist Anthony Wrigley extends the debate yet further in Chapter 6 with a piece on how signing up to euthanasia can become be life-extending for some – but not everyone. In Chapter 7, Isra Black scrutinises the circumstances under which assisted dying is morally permissible.
Rights claims are the focus of the third section, starting with Sharon Young's analysis in Chapter 8 of how rights relate to end-of-life debates, such as the right to personal liberty and human dignity encapsulated in the European Convention on Human Rights (ECHR) 1950. Similarly, Elizabeth Wicks applies Article 9 of the ECHR (freedom of thought, conscience and religion) to ‘right to die’ scenarios and concludes that understandings of belief systems need to be broadened. In Chapter 10, Thomas F. Tierney explores the evolution of thinking on euthanasia since the 16th century.
Transgression is richly covered in the studies in the fourth section. Chapter 11 is based on Ari Gandsman's ethnographic research on Exit International, an activist ‘right to die’ organisation that gives ‘do-it-yourself’ guidance on ending one's life. Activism gives the participants a sense of agency and belonging and has palliative value, even if the life-ending substances are left untouched. The second study in Chapter 12 comes from Els van Wijngaarden. She examines how right to die legislation in the Netherlands, one of the few countries to legalise euthanasia and assisted suicide under strict criteria, has made it more socially acceptable to discuss legally assisted dying for relatively healthy people seeking to avoid living too long. In Chapter 13, Glenys Caswell questions the tragedy and blames narratives prevalent in reports of people dying alone.
The book concludes with a provocation in Chapter 14 from Sue Westwood on what an alien who comes to earth might think of the legal inconsistencies. She concludes with a vision of a future in which the right to lawful assisted dying helps people live more meaningful lives.
The book's strength lies in the way it draws attention away from fiercely contested and polarising moral questions about ‘right’ and ‘wrong’, and guides the reader to ask why death and dying are regulated in the ways they are. The case for making assisted dying lawful in certain circumstances for those with terminal illness and debilitating conditions is convincingly and compassionately made.
The book does not deal with the ways in which death rights can be associated with profoundly negative discourses and value judgements about old age – that's not in its remit. However, in Chapter 12 Els van Wijngaarden addresses the regulation of death in old age. She calls for careful debate and further research addressing the complexity of the wish to choose death, and cautions against rushing into solutions.
