Family Decisions About Palliative Care

#9 Basic Research in Behavioral Medicine Research on decision-making in end of life care has focused largely on the decisions of individual patients. However, in about 75% of deaths, family members bear the responsibility of making decisions in end of life care. Current ethical and legal guidelines for family decision making incorporate a deliberative, rational model of decision making which gives priority to patients' individual autonomy and prior wishes. A wealth of anecdotal data from the bioethics literature suggest that these guidelines are inadequate, reflecting an individual rights-oriented moral framework that may be irrelevant to many families' actual priorities and needs, especially families from non-white, non-middle class communities. Yet in order to develop ethical guidelines and models of care that meet families' needs, empirical research is needed to improve our understanding of how families actually make decisions about end of life care. Of the few studies reported in the literature on this topic, most are retrospective studies or have been conducted on intensive care units where decision-making may have limited scope. The proposed study is an observational, qualitative investigation of family decision-making at a key turning point in end of life care: the decision to shift the direction of treatment away from curative efforts towards a palliative care approach. Patients from three ethnic groups will be recruited for the purpose of cross-cultural comparison. The study utilizes both participant observation of family interactions and decision-making processes, and qualitative interviewing. A follow up interview at a six week interval is included to assess the impact and meaning of palliative care decisions on family members. Aims of the study include: examining decis!on-making processes and moral priorities of family members, examining the barriers to realizing decision making priorities, investigating the long term impact of decision-making, and investigating cross cultural differences in decision processes. The overall goal of the study is to identify key variables, processes and outcomes that can be measured in a larger, hypothesis-testing study of family decision making.