The Gerontologist
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Review Multicenter Study
The experience of dying: an ethnographic nursing home study.
This article reviews the literature on "The Experience of Dying" and presents data from a larger, ongoing study of an ethnography of dying in nursing homes. The purpose of the ethnographic study was to investigate the process of providing end-of-life care to residents who were dying in nursing homes. ⋯ Future research is needed on: The experience of dying for patients with dementia, for people in a comatose state, and for non-English speaking patients; symptom management; health care provider/patient-family interaction; the burden of caregiving for families; and the consequences of the constraints within our health care system for people who are dying in various settings.
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The contribution of bioethics to clinical care at the end of life (EOL) deserves critical scrutiny. We argue that researchers have rarely questioned the normative power of autonomy-based bioethics practices. Research on the ethical dimensions of EOL decision making has focused on an idealized discourse of patient "choice" that requires patients to embrace their dying to receive excellent palliative care. ⋯ It is exceedingly difficult to identify, study, and critique normative assumptions without creating them, reproducing them, or obliterating them in the process. However, a fuller account of the morally significant domains of end-of-life care is needed. Researchers and policy makers should heed what we have learned from empirical research on EOL care to develop more sensitive and supportive programs for care of the dying.
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This article presents a model for research and practice that expands on the biopsychosocial model to include the spiritual concerns of patients. ⋯ Spiritual concerns are important to many patients, particularly at the end of life. Much work remains to be done in understanding the spiritual aspects of patient care and how to address spirituality in research and practice.