Whose Business Is Dying? Death, the Home and Palliative Care
Rosenberg, John, Cultural Studies Review
Support and care of people at the end of their lives, in some form or other, is present in all societies. What is referred to today as palliative care represents a particular response to death and dying set in specific historical and cultural contexts.1 The modern hospice movement originally emerged, at least in part, as a response to the perceived neglect of dying people by the dominant biomedical model of health care in parts of the Western world during the post-war period.2 While it was acknowledged that the biomedical approach enabled the development of proficiency in the cure of disease and prolongation of life, some argued modern medicine had lost its human face.3 Medical progress in the twentieth century 'transformed the experience of dying from a part of daily life to a highly technological event'.4 Death left home, as it were; its stewardship increasingly relinquished by families to charitable institutions, to newly emerging acute hospitals or simply left to chance. As a consequence, the home-the domestic space normally the sphere of family, care and comfort-has increasingly been replaced by institutional spaces as the most fitting scenes for death to occur.
The biomedical model has been criticised for removing the sick or dying person from their social context.5 Diagnoses and treatments increasingly failed to correspond to the day-to-day reality of health and illness experienced by 'ordinary people'.6 Dying and death is not considered solely a health care event, but is seen rather as a societal concern affecting individuals and their personal, interpersonal and social contexts, as well as whole communities.7 This sentiment has been eloquently captured:
The experiences of serious illness, dying, caregiving, grieving and death cannot be understood within a medical framework alone. These events are personal, but also fundamentally communal. Medical care and health services constitute essential components of a community's response, but not its entirety.8
Yet, despite its origins as 'a small rebellion against the way dying people were cared for', palliative care continues to exhibit many of the paternalistic practices of mainstream health care that its forebears were resisting.9 These practices, while well intentioned and often effective, find their origins in a sense of 'ownership' of the business of dying. But the clinical expertise of palliative care practitioners in the business of dying does not equate with ownership. The benign- but enduring-paternalism of palliative care service provision remains a philosophical and structural barrier to a paradigmatic shift towards a more complete understanding of the business of dying. Nascent attempts to promote community engagement in end of life issues are evident in the interface between palliative care and public health but dying remains, for the most part, the remit of health care services. As such, the business of dying is incompletely attended. I argue here for a need to reappraise the business of dying, and for the home to be seen as a fitting death scene.
-THE CUSTODY OF CARE
The modern hospice movement sought to restore a 'holistic approach to patient care, the family as the focus of care, and importance of multidisciplinary collaboration on a day to day basis'.10 It reclaimed dying through localised community action, with the momentum for the development of services often led by individual clinicians and idiosyncratic funding decisions.11 This unregulated and rapid proliferation of palliative care services in the Australian setting has been described thus:
The growth of specialist palliative care services for patients has been mostly unplanned and uncoordinated by Health Authorities. Development has been largely in response to local pressure, enthusiasm, and fundraising activity, and remained mostly within the charitable, independent sector.12
As a result, it seemed inevitable that conventional palliative care services would be integrated into the mainstream. …