‘The Good Death: An exploration of dying in America’ by Ann Neumann (Beacon Press, 2016).
Is it possible to have a ‘good’ death? And if so what might constitute a ‘good death’? In her book — The Good Death: An exploration of dying in America — writer and journalist Ann Neumann addresses questions familiar to those who work and research issues in end-of-life care. The book raises a pertinent question for many, particularly for those who live in the U.S. and the UK, where discussions around death and dying continue to be perceived as a societal taboo, as argued in a number of recently published titles (see Gawande, 2014; Schillace, 2015).
A Good Death situates itself within this important body of work by blending personal perspectives with a critique on modern dying. The book opens with Neumann’s own personal introduction to death — the death of her father. The experience of her father’s death, inlcuding the care he received as he was dying, propelled Neumann’s investigation into the state of end-of-life care in America. Neumann embarked upon a journey that led her across the U.S., from starting as a hospice volunteer to attending conferences and lectures, visiting prisons, and getting to grips with debates in medical law and ethics.
Neumann’s journalistic training is clearly evident in the way she deftly draws on a variety of texts to inform her understanding of death in America. The book explores discussions in medicine, religion and law and how they frame autonomy and choice at the end of life. Neumann focuses on the debates around assisted dying, medical overtreatment and the ethics of removing feeding tubes in those defined as being in a persistent vegetative state. Chapter Six enters into the world of the pro-life movement in America, in which Neumann deepens her investigation into what counts as ‘dead,’ and indeed ‘alive,’ leading her to reflect on the relevance of disability rights to the assisted dying movement in Chapter Seven. Neumann’s discussion on the pro-life movement was particularly insightful for me as a UK-based reader, as she demonstrates the extent to which religious ethical standpoints — specifically those of the Catholic Church, which have dedicated hospitals across the U.S — conflict and dispute with general medical ethics, and indeed laws, around reproductive rights. The variety of topics covered is wide-ranging, however, this causes the book to lose focus at certain points. In Chapter Eight, Neumann investigates dying in prisons, which, though absorbing, feels slightly detached from the rest of the book.
The second chapter of the book details Neumann’s experience as a hospice volunteer, which I found the most fascinating section of the book. Neumann visits the homes of her patients, building detailed narratives as the reader is introduced to the idiosyncratic characters of ‘Marshall’ and ‘Mr Cortez.’ Alongside this intimate narration is a potted history of end-of-life care in America: the influence of Dame Cicely Saunders in the UK and how the modern hospice movement reached the U.S. via the work of Elizabeth Kübler-Ross (renowned for her five stages of dying, subsequently adapted to grief).
In her description, at times it felt as though Neumann was romanticising her patients, where the intimacy she portrayed came at the expense of losing critical distance. In Chapter Nine Neumann introduces another hospice patient, ‘Evelyn,’ and acknowledged how her relationship with Evelyn developed beyond her role and duties as a hospice volunteer, becoming in effect, a part of Evelyn’s family.
In the concluding chapter, Neumann evokes Jacques Derrida (2001) and his thoughts on mourning, but what makes a good death is not just about telling stories. Articulating individual choice over one’s death has limited reach in a society where bodies and the boundaries of life and death are constantly managed and monitored by medicine, religion or law. I feel Neumann might have benefited more from centring on this concept of ‘choice’ in end-of-life care, and how ‘choice’ is ultimately a misnomer in that choice over one’s body is never quite achieved. I think this is what Neumann is reaching for in her conclusion for a ‘good enough’ death (not however a novel concept in end-of-life care, see McNamara 2004), in that a good enough death is a settling between what one has no control over (mortality) and what one can gain control over (how best to live one’s life).
Neumann concludes with the story of Evelyn to demonstrate the problems with “living too long,” to argue that a good death can be preferable to life, when life is felt to become empty and without purpose. It was here and throughout the book — in Neumann’s discussion of feeding tubes and the brain dead, disability, and prisoners — that I felt Neumann was pursuing the parallel question of what makes a life worth living, and who gets to decide. After all it is not only in death in which a person’s autonomy diminishes, autonomy over one’s life is a fragile construct. What is important about Neumann’s book is how it articulates that the desire for control over life and death nevertheless continues.
Well-written and engaging, though sometimes dense with information, Neumann has provided a solid overview of the issues facing end-of-life care in the U.S. The book is of specific interest to those concerned with issues surrounding autonomy, human rights and medical ethics, issues that cut across the medical humanities. Overall, however, I suggest the book is in need of more critical reflection on the humanities and social sciences. Neumann appears to overlook the interdisciplinary field of death and dying studies, which has explores the concept of a ‘good death’ and has also examined the shift in responsibility for death and dying from the individual to the medical profession. I was, for instance, anticipating some reflection on Glennys Howarth’s (2007) work on a good death or Clive Seale’s (1995) exploration of the ‘heroic’ death — which has much to offer Neumann’s argument for a dignified and individually chosen death. For this reason, Neumann’s book does not offer sufficient critique of a ‘good death.’ Neumann argues that a ‘good death’ is ultimately specific to the individual. A ‘good death’ implies individual choice, autonomy and keeping bodies under control. However, Neumann fails to link how this notion of a ‘good death’ is closely tied to the central tenets of modernity and reflected in modern healthcare services where awareness of death has become part of building one’s reflexive self-identity.
Reviewed by Caroline Pearce, who completed her PhD at the Faculty of Health and Social Care, at The Open University in 2016. Her research was a qualitative study examining the notion of recovery from grief following bereavement in the UK.
Correspondence to Caroline Pearce.
Works cited:
Derrida, Jacques. 2001. The work of mourning. Edited by Pascal-Anne Brault and Michael Naas. London: University of Chicago Press.
Gawande, Atul. 2014. Being mortal: Medicine and what matters in the end. New York: Metropolitan/Henry Holt & Company.
Howarth, Glennys. 2007. Death and dying: A sociological introduction. Cambridge: Polity.
McNamara, Beverley. 2004. Good enough death: Autonomy and choice in Australian palliative care. Social Science & Medicine, 58(5): 929-38.
Seale, Clive. 1995. Heroic Death. Sociology, 29(4): 597–613.
Schillace, Brandy. 2015. Death’s summer coat: What the history of death and dying can tell us about life and living. New York: Pegasus.
