A GOOD DEATH? Law and Ethics in Practice ed. by Lynn Hagger, Simon Woods (review)

Law and Ethics at the end of life (EOL) are topics that can be contentious, even controversial. For while we are all born, and we shall all die, socio-demographic changes coupled with medical advances have meant that the way we die has also undergone dramatic changes. We seem to be always trying to wrap our collective heads around the notion of death and dying, but in truth, there probably can never be just one way of looking at the issue.

This book then, represents one effort to add to the discussion. It arose from a UK Clinical Ethics Network Conference, “The Value of Life, the Value of Death”, held in 2008, which brought together academics, clinicians and families. The contributors hail from diverse backgrounds spanning ethics, philosophy, literature, health economics and medicine, including the parent of a child with a progressive fatal disease, representing so many perspectives.

The resulting thought-provoking collection of essays is firmly grounded in the UK context, so readers unfamiliar with English legal and social norms might not see the immediate relevance. For example, there is an essay devoted to health economics and how funding decisions within the NHS (National Health Service) were made, which, while not directly applicable to the Singapore context, still carries valuable lessons on the limitations of current Cost Effective Analysis approaches on guiding rationing of healthcare funding.

Each essay is written by an expert in the field, and supplemented where appropriate with references. The first few chapters explore the larger context or background to the central theme of the good death, whether from a social, philosophical, legal or health services standpoint. Provocative issues such as the right to demand treatment or death (Chapter 2) and the role (or not) of “suicide centres” as in the Swiss model (Chapter 5) are presented and discussed.

The second half of the book brings the focus closer to the coalface as it were, by discussing applications to patient care. An exploration of the concept of “the good death” is followed by the practicalities of EOL decision-making for children, the focus of the aforementioned conference. The volume ends with a mother’s moving account of her daughter’s short life with Tay-Sachs disease, and eloquently describes the struggles and triumphs, the sadness and joy, of their journey together.

As a palliative care specialist, I found the chapter on “Practical Realities of Decision-Making Relating to End of Life Care” by paediatrician Jeff Perring (Chapter 9) to be the most relevant. But this is not a “how-to” book, there are no algorithms nor tick boxes; indeed more questions are raised than answered, and many assumptions challenged. Simon Woods, in his discussion of “the good death” (Chapter 7) and its impact on palliative care in an evolving society, raises the issue of the ideally “palliatised” death being tied to “natural death” (itself a social construct) and the potential for tensions in a world when more are demanding control over their dying, including assisted suicide and euthanasia.

Sabine Vanacker, in writing of her daughter’s living and dying, quoted Susan Sontag (who herself had an intensely individual approach to her own dying, as related by her son David Rieff in Swimming in a Sea of Death: A Son’s Memoir [Simon & Schuster, 2008]): “Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick”. It reminds us that for all the deep intellectual and philosophical debates, ultimately what matters is the unique and human reality as experienced by an individual patient and family.

No matter what your background or interests, readers will find something in this book to pique their interest and stimulate debate and reflection.