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The Experience of Dying

An Ethnographic Nursing Home Study

^a Department of Physiological Nursing, University of California, San Francisco

Correspondence: Jeanie Kayser-Jones, RN, PhD, FAAN, Department of Physiological Nursing, University of California, San Francisco, 2 Kirkham Street, Room N631, San Francisco, CA 94143-0610. E-mail: jeanie.kayser-jones{at}nursing.ucsf.edu.

Purpose: 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. Design and Methods: Participant observation, in-depth interviews, and event analysis were used to obtain data in three nursing facilities. Results: The review of the literature disclosed that research on the experience of dying is limited; most of the studies have been conducted in acute care hospitals among people who were dying of cancer. The ethnographic study found that lack of attention to cultural needs, cognitive status, inadequate staffing, and inappropriate and inadequate communication between health care providers and nursing home residents and their families were the predominant factors that influenced the experience of dying. Implications: 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.

Key Words: Experience of dying • Nursing homes • Staffing • Health care provider-resident communication

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