Voices of African American, Caucasian, and Hispanic surrogates on the burdens of end-of-life decision making

BACKGROUND: End-of-life decisions are frequently made by patients' surrogates. Race and ethnicity may affect such decision making. Few studies have described how different racial/ethnic groups experience end-of-life surrogate decision making. OBJECTIVES: To describe the self-reported experience the self-reported experience of African-American, Caucasian, and Hispanic surrogate decision makers of seriously ill patients and to examine the relationship of race, ethnicity, and culture to that experience. DESIGN: Purposive sample to include racial/ethnic minorities in a qualitative study using focus group interviews. PARTICIPANTS: The participants of the study were 44 experienced, mostly female, surrogate decision makers for older veterans. APPROACH: Transcripts were qualitatively analyzed to identify major themes, with particular attention to themes that might be unique to each of the three groups. RESULTS: The experience of burden of end-of-life decision making was similar in all three groups. This burden in its medical, personal, and familial dimensions is compounded by uncertainty about prognosis and the patient's preferences. Racial/ethnic variations of responses to this burden concerned the physician-family relationship, religion and faith, and past experiences with race/ethnicity concordant versus non-concordant physicians. CONCLUSIONS: Regardless of race/ethnicity, surrogates for seriously ill patients appeared to experience increased significant, multidimensional burdens of decision making under conditions of uncertainty about a patient's preferences. This aspect of the burden of surrogate decision making may not be fully appreciated by physicians. Physicians should identify and be especially attentive to strategies used by surrogates, which may vary by race/ethnicity, to reduce the uncertainty about a patient's preferences and thus the burden of surrogate decision making to assist them in this difficult process.