ETHNOGRAPHY OF DYING IN A LONG TERM CARE FACILITY

University Of California San Francisco, San Francisco CA

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Abstract

DESCRIPTION (adapted from investigator's abstract): The purpose of this 5-year anthropological study is to investigate the process of providing end-of-life care to people who are dying in a nursing home, aiming to unravel the social, cultural, environmental, and clinical factors that influence the care of terminally-ill residents (i.e. people who are dying or expected to die within 6-12 months or sooner). The specific aims are to identify, describe, and analyze: (1) The social (e.g., socioeconomic status), cultural (e.g., religion), environmental (e.g., staffing), and clinical (e.g., cancer versus end-stage dementia) factors that influence care of dying residents; (2) Resident characteristics (e.g. age, ethnicity, and mental, physical, and functional status,) that influence care; (3) The process of managing the physical (especially pain), psychosocial, and spiritual care of dying resident; (4) Residents (and families) perceptions, concerns, and beliefs about death and dying; (5) The perceptions, concerns, and beliefs of health care providers (e.g. physicians, nursing staff, and social workers) about death and dying; (6) The cultural and spiritual meaning of death and dying to residents (and their families) of various religious and ethnic groups and (7) How health care provider-resident interaction (i.e. communication) influences that care of terminally-ill residents. Participant observation, in-depth interviews with terminally-ill residents, their families, nursing home staff, and physicians (50 in each group, N=200), and event analysis will be used to describe prospectively the care of 100 terminally-ill residents. Primary emphasis will be on qualitative data analysis, describing analyzing the process of providing end-of-life care to terminally-ill residents. Descriptive statistics and the Chi-Square test, the Mann-Whitney U test, and the Kruskal-Wallis test will be used to analyze the quantitative data. This research will extend the body of knowledge theoretically in the area of physician/nurse-elderly patient communication, and in the applied area of pain management. Findings may suggest interventions that will improve the end-of-life care of terminally-ill nursing home residents.