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Braun U, McCullough L, Ford M, Espadas D, Beyth R. End-of-life care across race and ethnicities: Voices of patients, surrogates, and physicians. [Abstract]. Journal of the American Geriatrics Society. 2005 Apr 1; 53(s1):S137-8.
Purpose: End-of-life care choices have been shown to vary by race and ethnicity. Efforts to understand these differences may help improve the quality of end-of-life care. Methods: We conducted a total of 8 patient, 8 surrogate, and 7 physician focus groups, separately by race and ethnicity. Participants included Caucasians (13 patients, 15 surrogates, 11 physicians), African-Americans (14 patients, 15 surrogates, 8 physicians), and Hispanics (18 patients, 14 surrogates, 7 physicians). Inductive qualitative analysis of natural language statements to identify themes expressed in the focus groups was done in a consensus-building process. Results: Patients mainly expressed concern about losing functional independence and becoming a burden, both financially and emotionally on their families. In addition, non-Caucasian patients worried about their own diminishing caregiving abilities for their spouses. Surrogates reported feeling enormous stress from the burden of medical decision-making; at the same time Caucasian and African American surrogates felt conflicted about implementing the patient's choice to decline life-prolonging therapy for fear of losing the patient. Minority patients and surrogates appeared to value physician competence and trust without concern for racial or ethnic concordance, although most of them had never had exposure to minority physicians. On the other hand, minority physicians expressed feeling special responsibility to patients of their own race or ethnicity, and spending more effort to assure that medical information was understood. Conclusions: Both patients and surrogates wanted to reduce the burden of decision-making. This concern cut across race and ethnicity and suggests an important role for physicians to initiate and facilitate discussions about end-of-life care preferences between patients and potential surrogates. Further research examining ways to improve communication among these different groups need to be developed so that the end-of-life treatment needs of patients can be better met.
