McNamara Beverley
The University of Western Australia, 35 Stirling Highway, Crawley 6009, Australia.
Soc Sci Med. 2004 Mar;58(5):929-38. doi: 10.1016/j.socscimed.2003.10.042.
This paper draws upon Australian fieldwork to trace the changing notions of a good death held by hospice and palliative care practitioners. Palliative care practitioners search for an ideology to inform their practice within the context of a complex society for which there is no one good death. Social demographics, the multicultural nature of society and institutional constraints frame the experience of dying in complex ways, while contemporary social responses to dying reflect the uncertainties held by many Australians. Despite the fragmentation evident within contemporary Australian society, the hospice movement in Australia and in other Western contexts has sought to reintroduce a ritual for dying. The good death ideology of the original hospice movement proposed a manner of dying in which open communication and acceptance of death were actively encouraged. The hospice model of a good death, however, has become increasingly inappropriate in the current climate of patient autonomy and consumer choice. The practice of palliative care, a holistic form of care for dying people, which follows the individualistic ethic of choice, has emerged from and replaced the original hospice movement. Consequently, the good death of the original hospice movement has been abandoned in favour of a philosophy of a 'good enough' death. However, what may appear a compromise informed by ethical practice masks a return to routine medical practices and a hierarchy of care which prioritises the physical management of symptoms. It appears that while palliative care practitioners may often fail in their facilitation of a good death for their patients, they can be proactive in alleviating their patients' pain and physical discomfort.
本文借鉴澳大利亚的实地调查，追溯临终关怀与姑息治疗从业者对善终观念的变化。姑息治疗从业者在一个不存在单一善终模式的复杂社会背景下，寻求一种指导其实践的理念。社会人口统计学、社会的多元文化性质以及制度限制以复杂的方式构建了死亡体验，而当代社会对死亡的反应反映了许多澳大利亚人所持有的不确定性。尽管当代澳大利亚社会存在明显的碎片化现象，但澳大利亚及其他西方背景下的临终关怀运动试图重新引入一种死亡仪式。最初的临终关怀运动的善终理念倡导一种积极鼓励公开沟通和接受死亡的死亡方式。然而，在当前患者自主和消费者选择的氛围下，临终关怀运动的善终模式已变得越来越不合适。遵循个人主义选择伦理的姑息治疗，作为一种针对临终患者的整体护理形式，已从最初的临终关怀运动中发展而来并取而代之。因此，最初临终关怀运动的善终理念已被摒弃，转而支持一种“足够好”的死亡哲学。然而，这种看似由道德实践促成的妥协，实则掩盖了回归常规医疗实践以及优先考虑症状物理管理的护理等级制度。似乎尽管姑息治疗从业者在为患者促成善终方面常常失败，但他们在减轻患者疼痛和身体不适方面可以积极主动。
