This is a book about slow dying in hospitals in the United States. It reports an ethnographic study that was conducted over two years by a medical anthropologist who had access to 100 critically-ill patients, their families and the hospital staff that attended them. Although the book does not focus on accident and emergency deaths, or the deaths of people in intensive care or palliative care, many of Kaufman's observations and insights apply to these other institutional scenarios. The major reason why this is so has to do with the major cultural reason that underpins these different service contexts: the tension between recognition of the ‘right’ time to die and the desire to fight for life until the evidence that the ‘fight’ cannot be won. And herein lies the nub – clarity is the first victim of a hospital culture in which new technologies, shifting definitions of death, bureaucratic pressures, the popular desire for ‘choice’, and the logic of medical-treatment pathways create seemingly impossible ambiguities in the determination of when dying begins and ends.
Between life and death these emergent technological and cultural contexts help create what Kaufman calls a ‘grey zone’of numerous ways by which current technologies postpone death, with the result that many seriously ill people are neither (by any easy consensus) quite ‘alive’ nor quite ‘dead’. Some people may not be ‘beyond help’ depending on one's definition of ‘how far to go’ and what constitutes ‘help’. Into this biological ambiguity about what is ‘natural’ for a ‘seriously ill’ person, as opposed to a ‘dying’ person, ‘the body’ is influenced by the American individualism that requires ‘choices’ or ‘decisions’ about quality of life, and quality and type of care, amid an array of assessments about what is reversible or not reversible in a medical crisis or disease process. Biology, culture and technical aspects of care have become intricately complex and interwoven. Moral choices have become finely incremental, displaying mixtures of partial decisions in a medical journey that can be broken into a 100 steps, turns and possible reversals. Through 27 case studies, Kaufman is able to describe and explore these intricacies thoroughly and with great success.
In the broader context of other studies of dying, Kaufman's work is unique and welcome in several ways. The last 10 years have seen numerous qualitative studies of dying in hospices, especially in Australia and Britain. Beyond palliative care, there are even more studies of dying from cancer in diverse settings: outpatient, inpatient or hospice. Less common have been nuanced studies of hospital dying, even though such deaths are far more common than dying under palliative care. Also welcome is the strong ethnographic showing of this important but underemployed method of social research. The lemming-like tendency for social researchers to prefer interviewing or survey methods alone, even in sensitive research areas such as dying or grieving, demonstrates an over-rated value of talk, and a serious under-estimation of the culture-specific nature of spoken communication. Finally, much has been written about the ‘good death’ over the last decade, but hardly a word about what fundamental cultural and historical values underpin how death is made ‘good’. Kaufman identifies the matter of ‘timing’ as a crucial element in American moral assessments of the good death, although I believe this observation is today applicable worldwide. Without doubt, on methodological, theoretical and empirical grounds, this book is well worth reading by anyone interested in death and dying.
It is also a book that should be viewed in the wide context of the social sciences conversation about death and dying. Even Kaufman wisely cautions the reader not to view her work as a study of ‘typical’ hospital dying, but rather as a study of ‘problem’ dying: types of dying where the intersection of routine hospital or medical logic meets the growing prevalence but historically ‘unnatural’ forms of dying (such as persistent vegetative states), and the complex iterative decision-making with and against staff, family and dying patients. Furthermore, although most dying occurs in hospitals, in the USA, Britain and Australia a large minority of deaths occur in nursing homes. Indeed, most dying in wealthy societies is at ages older than 65 years, and frequently follows a sudden accident or other medical incident or slow deterioration, whether at home, in aged-care facilities, or in hospitals. This broader picture of modern dying is not part of Kaufman's current book. Even more, most dying in global terms does not occur in the way that Kaufman describes but in poverty, with little hospital or medical infrastructure or, as commonly with AIDS, with precious little community support. Kaufman's good work must be viewed in this broader context. Yet in all this, it is a tribute to the book that it develops important sociological insights that might be employed in understanding dying in all these other contexts.
For the growing number of students and writers, such as myself, interested in dying, I would have liked to have read Kaufman's views about and engagement with other important studies of dying, such as those thoughtfully produced by Hinton, Hockey, Lawson, McNamara, Young and Cullen, Charmaz, Fox, Kalish, and Kastenbaum. I think that critical conversations about the changing culture surrounding modern dying conducted with these other writers – who have trodden this difficult and complex research path – would have deepened and extended this otherwise wonderful and important contribution.
