End of Life in African American Older Adults: An Integrative Literature Review

Background: End-of-life care in the United States is described as deficient and fragmented. Minority populations engage in end-of-life planning less frequently than Caucasians. African Americans represent the second largest minority group in the United States with its older adult population projected to increase by 114% by 2030. The Patient-Self Determination Act of 1990 requires Medicare and Medicaid funded healthcare organizations to empower patients to refuse or accept medical care and execute advance directives. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) confirmed substantial shortcomings of healthcare for seriously ill patients near the end of life. From this study came the Institute of Medicine’s report Approaching Death: Improving Care at the End of Life, which further demonstrated the need for evidence-based end-of-life care models. End-of-life care is the broad term used to describe the attention and support given during the period leading to death. Advance directives are a mechanism to safeguard control over decision making when one can no longer express preferences for end-of-life care.

Methods: Literature searches were conducted using the following databases: CINAHL, Cochrane Library, Ovid MEDLINE, Pub Med, Psych Info, Web of Science and ancestry searches. Keywords used were: African American, Blacks, end of life and older adults. Articles searched were published between 2007 and 2014. Studies were included based on the following criteria: (a) included African Americans, (b) participants were 60 years of age or older, (c) the issue of end of life was addressed, (d) research-based, and (e) published in the English language. Twenty-eight articles met these criteria.

Findings: African Americans use hospice and prepare advanced directives less often as compared to Caucasians or other races. African American older adults, in general, tend not to prepare advance directives as the focus is often on interment preparation versus symptom management care trajectory. African American decedents generally received more life-sustaining interventions than non-Blacks during hospitalization near the end of life. Among the many factors that may contribute to African American older adult end-of-life decision making, the following were most salient: (1) individual and familial belief systems, (2) culture and socialization, (3) religion/spirituality, and (4) past events in history that have led to mistrust of the United States healthcare system. The majority of research conducted on this topic was done so in the oncology, renal, and cardiology populations. African American older adults place significant emphasis on family involvement in healthcare decision making.

Conclusions: Confluences of multiple factors contribute to African American end-of-life decision making. Based on this review, further research is needed on end-of-life decision making for African American older adults with an emphasis on strategies to improve this experience for older adults with cognitive impairment such as dementia using their family caregivers. A better understanding of end-of-life decision making processes in this population is needed for the development of culturally tailored end-of-life educational interventions to meet the specific needs of patients and families, improving end-of-life care and subsequently quality of life for all involved.