Research That Matters (January 17 - 20, 2008)

Background: Several studies have identified differences in end-of-life preferences across racial/ethnic groups. Increasing social work knowledge about the appropriateness and acceptability of end-of-life care among various groups is imperative. A 2004 National Institutes of Health consensus conference on Improving End-of-Life Care addressed the need to include more minorities in research, reduce gender and age disparities, and use multiple methods of data collection. Given need to educate social workers about end of life care with diverse populations, the growth in the number of racial minorities in the aging population in the U.S., and the disproportionately high rate of morbidity and mortality among on such group, older African Americans, this study sought to understand African Americans' preferences and perspectives around end-of-life care.

Objectives: (1) To explore with-in group experiences that influence end-of-life care decisions among older African Americans, and (2) To characterize domains of a “good death” for people similar to those who participated in this research.

Methods: Community-dwelling elders were recruited to participate in 12 focus groups and complete follow-up questionnaires. A semi-structured focus group guide was developed to interview older African Americans (n=102). Five themes emerged and were used to characterize a “good death.” The mean age + standard deviation was 72 + 6.5 (range 55-89). Narrative data on what constitutes a “good death” are presented to educate the social worker from an African American perspective.

Findings: The findings suggest that preferences for care at end-of-life for these community-dwelling participations included: (1) adequate spiritual support, (2) limited burdens on their social support network, (3) trust of medical care providers, (4) adequate health insurance coverage, and (5) adequate attention to cultural concerns. Several perceived barriers to quality care were identified including (1) limited knowledge among African Americans about end-of-life care services (including hospice), (2) lack of health insurance to facilitate care, and (3) inequity in the treatment of African Americans by health care providers. Conclusion: The findings in this study offer insight into the perspectives and preferences of older African Americans. The factors identified in this study can be incorporated into social work education in the area of end-of-life care to social workers improve access and appropriateness of care for this population.