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Current Research Findings on End-of-Life Decision Making Among Racially or Ethnically Diverse Groups

Correspondence: Address correspondence to Jung Kwak, School of Aging Studies, University of South Florida, 4202 E. Fowler Avenue, MHC 1305, Tampa, FL 33620. E-mail: jkwak{at}cas.usf.edu

Purpose: We reviewed the research literature on racial or ethnic diversity and end-of-life decision making in order to identify key findings and provide recommendations for future research. Design and Methods: We identified 33 empirical studies in which race or ethnicity was investigated as either a variable predicting treatment preferences or choices, where racial or ethnic groups were compared in their end-of-life decisions, or where the end-of-life decision making of a single minority group was studied in depth. We conducted a narrative review and identified four topical domains of study: advance directives; life support; disclosure and communication of diagnosis, prognosis, and preferences; and designation of primary decision makers. Results: Non-White racial or ethnic groups generally lacked knowledge of advance directives and were less likely than Whites to support advance directives. African Americans were consistently found to prefer the use of life support; Asians and Hispanics were more likely to prefer family-centered decision making than other racial or ethnic groups. Variations within groups existed and were related to cultural values, demographic characteristics, level of acculturation, and knowledge of end-of-life treatment options. Common methodological limitations of these studies were lack of theoretical framework, use of cross-sectional designs, convenience samples, and self-developed measurement scales. Implications: Although the studies are limited by methodological concerns, identified differences in end-of-life decision-making preference and practice suggest that clinical care and policy should recognize the variety of values and preferences found among diverse racial or ethnic groups. Future research priorities are described to better inform clinicians and policy makers about ways to allow for more culturally sensitive approaches to end-of-life care.

Key Words: End of life • Decision making • Diversity • Family caregiving

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