The Dying Process: Experiences of Patients in Palliative CareBMJ 2001; 322 doi: http://dx.doi.org/10.1136/bmj.322.7290.870/a (Published 07 April 2001) Cite this as: BMJ 2001;322:870
Routledge, £14.99, pp 240
ISBN 0 415 22679 1
This is a book that can—and will—be read on many different levels. To patients, or their families, it may truly reflect some of the distress that they have experienced. To the medical sociologist it is no doubt an interesting academic discourse on the concept of “self” in contemporary England, and the changes that the “self” goes through when faced with impending death. To a doctor, particularly one working in palliative medicine, it throws up many challenges to accepted practice.
It is an ethnographic study of a hospice in England in 1994-95, conducted by a medical sociologist. It describes vividly the patients and the setting—all the more so for being written by someone with no previous experience of hospices or death. The patients certainly reflect the sort of people and problems that I see in my daily work. Lawton does, however, concentrate particularly on patients with particular problems—those of loss of control over bodily functions and emissions. She terms this the “unbounded body.”
She develops a persuasive argument that it is the unbounded body that is unacceptable in contemporary England. Many of the patients she saw were admitted because of problems such as incontinence, fungating wounds, or fistulae. She observed that these people were often perceived, by themselves and their carers, to have somehow lost their personhood—to have died a “social death” before their biological death. Taking this a step further, she claims that hospices could be seen as places of sequestration, to take the patients that in society's view are no longer truly people. This leads on to the theory that “self” is determined by the ability to control one's body, rather than, as previously thought, by the ability to maintain social relationships.
The most contentious arguments in the book relate to accepted hospice philosophy. Firstly, Lawton claims that the oft quoted aim of helping people to live until they die is well-nigh impossible in the case of the “unbounded body.” Secondly, she strongly criticises the policy of allowing death to happen in public, claiming that as care givers we too see dying patients as somehow less human, and therefore sacrifice their dignity and privacy for the benefit of other patients and, indeed, for ideological purposes.
This book, although dry in parts, reads as a passionate criticism of concepts that many of us take as gospel. In the best traditions of qualitative research, it illuminates the experiences of our patients. For both these reasons, I would recommend those interested in this area to read this and make up their own minds about the arguments.