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Nursing home residents and their families often have little input into end-of-life medical decisions

Discussions about end-of-life treatment between nursing home residents, their families, and physicians still occur rarely and remain narrow in scope. Thus, residents' and families' roles in medical decisionmaking in nursing homes may be limited, concludes a study supported in part by the Agency for Health Care Policy and Research (National Research Service Award training grant T32 HS00052).

The 1990 Patient Self-Determination Act (PSDA) requires health care organizations to educate patients and staff about end-of-life treatment and to document patients' wishes (advance directives). Since passage of the PSDA, nearly twice as many residents had documented discussions of future medical treatment in their medical records (20 percent pre-PSDA vs. 37 percent post-PSDA), according to the researchers.

However, among those who did discuss these wishes with their physicians, 90 percent had only one discussion within the first year of nursing home admission, and 58 percent talked only about life-support systems, such as cardiopulmonary resuscitation, artificial nutrition and hydration, and artificial ventilation. Few residents discussed broader preferences for future treatment, such as pain management, hospitalization, or proxy decisionmaking. Residents with cognitive impairment or poor functional status were more likely to have had at least one discussion.

Residents, families, and clinicians may be more likely to undertake such discussions when life-sustaining treatment decisions appear imminent, note the researchers who are from Yale University and the National Institute on Aging. They retrospectively examined medical records of 600 randomly selected residents at six large Connecticut nursing homes who were admitted to the nursing homes from 1990 to 1994. They calculated the frequency of end-of-life care discussions among residents, their families, and physicians both before and after passage of the PSDA.

More details are in "Discussions about end-of-life care in nursing homes," by Elizabeth H. Bradley, Ph.D., Vasum Peiris, M.P.H., and Terrie Wetle, Ph.D., in the October 1998 Journal of the American Geriatrics Society 46, pp. 1235-1241.

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