A Sociological Critique of 'Grand Narratives' in the History of Hospice and Palliative Care

Abstract

This thesis is a sociological history and critique of hospice and palliative care: their goals, narratives, and social, clinical and ethical practices. Hospice developed in Britain as a result of and challenge to interventionist biomedicine within hospitals where dying came to be viewed as medical failure. From the mid twentieth century hospice was promoted as a 'philosophy of care' that had at its locus a concept of 'whole' person family care for people who are dying. For the first tune patients and then: relatives became the unit of care. Henceforth, hospice established for itself three major 'goals'; (1) hoUstic symptom management, (2) acting as a surrogate family for dying persons and their relatives in an atmosphere of homeliness where staff (3) worked together in non-hierarchical multidisciplmary teams. The hospice agenda m caring for the dying aimed to 'promote living and even to facihtate personal growth during the dying process' (Moller, 1996:40). This was postulated as the ideal standard in offering humane care to the dying patient and for achieving a 'good death'. For many years hospice philosophy was practiced in volimtary hospices that were charitable organisations deliberately located outside the National Health Service. An exponential growth in the number of such organisations during the 1970s and 1980s spawned a movement which subsequently led to the creation of a new medical specialty in 1987, that of palliative medicine. Hospices' 'grand narrative' refers to the dominant 'official' story about their development and about the activities that were or are carried out withm them. In addition to offering a new way of looking at hospice history, I used the 'goals' of hospice as espoused in the 'grand narrative' to guide my observations in two hospices in one British region. I explore how hospice professionals employ methods of control that help both manage the dying process and maintain institutional order. The study took place over a four year period with the aim of determining to what extent the 'grand narrative' matched practice or whether as Lawton (2000) proposed there is a 'gap between rhetoric and reahty' of hospice care. This thesis represents a challenge to hospice, a refusal to valorise the story proponents have told and continue to tell about the practices that are carried out under the banner 'hospice' and more recently palliative care / medicine.