Learning Objective #1: Describe common health care decisions made by patients near death and their families

Learning Objective #2: Describe differences in patients' preferences for family involvement in care decisions at the end-of-life and actual family involvement

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M. T. Nolan, J. Kub, M. Hughes, P.B. Terry, A.B. Astrow, J.R. Sood, R. Thompson, D.P. Sulmasy; Johns Hopkins University Baltimore, MD and St. Vincent's Hospital--Manhattan, New York, NY;

PROBLEM: The preferences of terminally ill patients for involving family in care decisions range from no involvement, through shared decisions, to decisions reliant upon family. There is little evidence comparing patients' preferences with actual decisional roles of family near death. PURPOSE: To compare patient preferences for family involvement in decisions with actual involvement DESIGN: Paired comparison of preferred and actual family decision involvement near death. SETTING AND PARTICIPANTS: 64 patients with cancer (44%), CHF (34%), and amyotrophic lateral sclerosis (22%) and their family from 2 academic medical centers. MAIN OUTCOME MEASURES: Decisions made near death and patients' preferences for and actual family involvement. RESULTS: Most (73%) of the 64 patients retained decisional capacity and the majority (56%) made decisions within the last 2 weeks of life. Decisions involved treatments (36%), resuscitation (27%), and palliative care (22%). Of the 47 patients who retained decisional capacity, 49% preferred shared decision making, 45% preferred independent decision making, and 4% preferred to rely on family for decisions. Paired comparisons revealed non-significant differences. Fifty percent of patients' preferences for family involvement matched the actual family role. In 32% of cases however, the role that the patient played was more independent than the patient had preferred. Only 18% involved the patient being less independent in decision-making than preferred. CONCLUSIONS: Many patients near death are offered aggressive treatments. Some family members may be reluctant to participate in decisions near death to the extent that their loved ones desire or may simply report a lesser level of involvement to minimize the stress of these decisions. Further study is needed to more fully understand patient and family decision-making near death.