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Hospice and Palliative Care as a New Social Movement: A Case Illustration from South Australia

For over a decade the provision of hospice and palliative care services (HPC) for South Australians has developed from humble beginnings and grown steadily (1). Although the actual number of specialist hospices remains quite small, this has not impeded the spread of knowledge and expertise in palliative care; it has taken hold in hospitals, nursing homes, and other residential homes and it is also being applied by homebased caregivers. Furthermore, HPC has made strides to secure professional recognition as a medical and health care knowledge discipline, based on the practical learning and applied research of a host of palliative care workers (PCWs) and supported by continuing education and vocational training designed for their needs (2). More than that, the growth of the service is evidence of wider community recognition of the special care needs of those at the terminal stage of an illness and dying, together with the support needs of their circle of family and friends. The growth of HPC provision in South Australia could be plainly described as a long historical process, one which has involved dedicated health care practitioners and community-minded activists pressing the case for a comprehensive service. In the process an increasingly mobilized movement for HPC has also advocated recognition from and cooperation with other health care workers, the creation of legislative frameworks and funding support from politicians and government, incorporation into professional medical and health education, the support of voluntary bodies and individual volunteers, and general acceptance in the wider community. Within such a context HPC provision usually depicts itself as dedicated to the principles and practices of holistic health care, shifting the centre of gravity away from the dominance of the biomedical model. Such a narrative history certainly reflects the emergence of these developments, united by the theme of partnership between voluntarism, professional and vocational interests, tertiary education providers, different levels of government and, not least, the many users of hospice and palliative care that is, the patients, families, and friends touched by direct contact with the service. The relative neglect of the needs of dying patients by a health system driven to persist with useless curative treatments has provided the impetus in recent times to develop HPC services in local communities. In more general sociocultural terms, the establishment of a service for terminally ill people during the last quarter of the century, in Australia and elsewhere, might be seen to reflect the beginning of a change of collective mind. This means moving away from a death-denying society, one characterized by general taboos in talking about dying and recognizing the naturalness of death, to one in which there is increasing public awareness and acceptance of the inevitability of the last journey of life we will all take. Privately, as people age they learn to live with an increasing awareness of their own mortality. Publicly, they may now take some comfort from the knowledge that when their time comes to die, competent PCWs may be at hand to assist them manage the physical, mental, and spiritual process of letting go of life. In both the public and private spheres of life, securing HPC provision marks a step forward in achieving another hallmark of a civilized society. Combining specialist knowledge and organized care with humane qualities and compassionate values creates a "gift relationship" with people as they pass from this life (3).