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Book Review
Fragile lives: death, dying and care
Beverley McNamara
2001 165 pp pages Sydney: Allen & Unwin
Catherine Garrett
School of Applied Social and Human Sciences, University of Western Sydney, Parramatta Campus, NSW
On the day before my sister-in-law died of cancer, Fragile Lives arrived in the mail: an inspection copy from the publishers. I read it on the plane, travelling interstate for the funeral. I mention the context of this review to show that I have approached it as most of its readers will:with experiential questions as well as an academic interest in its arguments and methods of research and presentation. Beverley McNamara aims to demonstrate, first, that dying is a social problem – in particular, a problem of how we care for dying people in postmodern, western society – and second, that in this caring, and in acknowledging the fragility of our lives, ‘we are strengthened by the human bond’ (p. 1):death and dying, she argues, both challenge and renew our sense of ourselves as social beings. The methods that led to these conclusions include ethnography, interviews with terminally ill people and their families, palliative care nurses and other professionals, and the collection of statistical data on attitudes to euthanasia. While McNamara ’s case studies are mainly Australian, they are ‘reflective of broader trends in multicultural Western societies ’ (p. vii). Some of her findings have been published as articles between 1994-8 and, of these, several come from collaborative research with Charles Waddell and others. Fragile Lives brings them together in ten connected chapters.
The book begins with some background ‘against which we can make sense of our own dying’. Accepting our shared vulnerability, it argues, is the prerequisite for empathy with others who must die before us: it is the basis for our ‘social communion with one another . . . in the face of death’ (p. 13). Today, discussions about death are ‘not taboo, but they are awkward’ (p. 25) yet in her conversations McNamara has broached the topics of cancer, euthanasia, life after death and the strains of caring for the dying, to give a wider picture of contemporary attitudes to these issues. If modernism ever did place a taboo on discussing death, the postmodern fascination with bodies, emotions and spirituality seems to be removing it. At the same time, the uneasy relationship between the ‘meaning-based’ approach of palliative care and the scientific rationality of medicine reflects the tension between postmodern death and its medical management.
McNamara’s discussion of the medical approach to death is built around an erotic metaphor: the ‘complicated affair’ medicine has conducted with death for the last 200 years. ‘Just like an illicit romantic affair’, she says, ‘it is plagued with social, moral, psychological, biological and legal problems ’ (p. 68). It is also based on an ultimately hopeless attempt to control death by affirming life. Medical ideology and medical technology have combined to make it more difficult for individuals to accept death, while paradoxically helping to provide them with a longer and healthier life in which to contemplate the inevitability of their demise (p. 69). This paradox underlies most of the problems that surround palliative care. For example, while the palliative care movement has the potential to resist the medicalisation of dying, the availability of increasingly sophisticated medical technology often makes it difficult to discern the boundaries between alleviating pain and retarding inevitable death (McNamara is, of course, careful to point out the great benefits of medical science in helping relieve some of the pain associated with dying). These are ethical issues but not, as this book shows, those always addressed by bioethicists. When such issues are explored in their social context, as they are in Fragile Lives, new sets of questions emerge.
A chapter on cancer explores the symbolic association of cancer with death, ending with a narrative analysis of her father’s death, its effects on his family and its importance in generating the questions in this book. How, she asks, can a better understanding of cancer and the ‘whirlpool of emotions’ it generates help us to die a ‘better death (p. 39)? And what does a ‘good death’ really mean? The chapter devoted to this last question argues that the idea of the ‘good death’ has become a restrictive ideology with moral overtones, but the ideology of the ‘good enough death is also flawed: it relies on an individualistic approach to dying that ‘allows health professionals to rationalise the failures in terms of the dying person s decisions rather than in terms of failures on the part of the organisation that manages the person’s death' (p. 51-2).
The real problem faced by postmodern societies in relation to death, McNamara argues, is contemporary individualism. Death, she writes, is now a ‘private concern’ (p. 64) full of uncertainties. The lack of religious certainty in contemporary Western society ‘complicates people’s existential distress’. Of all the needs of dying people, the spiritual needs ‘seem to be the least understood’ (p. 58). In her middle chapter, McNamara candidly describes the changes that take place in the bodies of dying people and in their emotional and spiritual dimensions. She settles for the idea that ‘sacred and the secular are not binary opposites and many people do not identify with one or the other but are influenced by both’ (p. 61). Nor is dying ‘the great leveller’: the ways in which people die depend very much upon their place in society:their income, education, gender and ethnicity. Her warning against stereotyping people’s responses to death according to their cultural background is just one example of the precision and subtlety of her analysis. The second half of the book turns to important issues in the care of the dying. As well as the chapter on the relationship between death and medicine, they include discussion of whether and how to speak the ‘truth’ about dying, patient autonomy vs professional control, the rewards and costs of caring and discussion of questions about palliative care: does it mask pain or mask death?
Some of the most memorable parts of the book are the stories of McNamara’s interaction with patients and nurses. Her account of the way palliative care nurses construct shared meaning and values in the face of death is particularly moving and justifies her faith in the power of narrative, carefully interpreted, to bring forth new forms of understanding. She describes in detail how she witnessed the death of a particular patient, ‘Mr Garvey’, and how the language and actions of his nurses jointly constructed a philosophy for what they do and a means of coping with the stresses of their work. For these nurses, death was reconstructed as potentially ‘good’ - not least because dying and mourning are valued as normal parts of life (p. 119). Their work reassures them, and us, that death is social in another sense too: that we need not die alone.
Fragile Lives rings true because it so clearly shows the sources of knowledge in human stories told by a researcher who recognizes what she has in common with the participants in her research. As I finished reading it, in the days after my own family funeral, it offered personal, as well as sociological, wisdom. It also reminded me that in sociology at its best, the two are inseparable.
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