Justin J Sanders1, Maisha T Robinson2, Susan D Block1. 1. 1 Division of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute and Ariadne Labs , Boston, Massachusetts. 2. 2 Department of Neurology, University of California Los Angeles , Los Angeles, California.
Abstract
BACKGROUND: African Americans (AA) are more likely to receive worse end-of-life (EOL) care and are less likely to participate in advance care planning (ACP) than white Americans. OBJECTIVE: Our goal was to understand factors impacting ACP among AA and explore their interactions, in order to guide further research and intervention development. METHODS: We systematically identified, using Medline, Embase, and World of Science databases, the quantitative and qualitative ACP literature in which AA were included. We assessed the quality of these studies and evaluated the literature in an iterative and integrative fashion, using themes developed from the qualitative literature to understand and categorize findings from the quantitative literature. RESULTS: Thirty-eight mostly moderate and low quality quantitative studies focused largely on advance directive (AD) completion. Whereas most conclude that AA, when compared with white Americans, prefer more aggressive care, participate less in ACP, and are more likely to informally discuss EOL care than to formally document wishes, study findings were contradictory in a number of domains. Fourteen qualitative studies revealed a number of themes that informed the development of an empirically derived model to explain the relationship of factors impacting ACP for AA along historical and structural axes. CONCLUSIONS: The multiple factors that impact ACP for AA are inter-related and may result in part from historical realities that shape contemporary experience. We know little from the data about how best to improve ACP in AA. That AA appear to prefer informal discussions about ACP to formal documentation of preferences suggests that future research should focus on improving ACP conversations among clinicians, patients, and their families in order to improve the receipt of goal-concordant care at EOL.
BACKGROUND: African Americans (AA) are more likely to receive worse end-of-life (EOL) care and are less likely to participate in advance care planning (ACP) than white Americans. OBJECTIVE: Our goal was to understand factors impacting ACP among AA and explore their interactions, in order to guide further research and intervention development. METHODS: We systematically identified, using Medline, Embase, and World of Science databases, the quantitative and qualitative ACP literature in which AA were included. We assessed the quality of these studies and evaluated the literature in an iterative and integrative fashion, using themes developed from the qualitative literature to understand and categorize findings from the quantitative literature. RESULTS: Thirty-eight mostly moderate and low quality quantitative studies focused largely on advance directive (AD) completion. Whereas most conclude that AA, when compared with white Americans, prefer more aggressive care, participate less in ACP, and are more likely to informally discuss EOL care than to formally document wishes, study findings were contradictory in a number of domains. Fourteen qualitative studies revealed a number of themes that informed the development of an empirically derived model to explain the relationship of factors impacting ACP for AA along historical and structural axes. CONCLUSIONS: The multiple factors that impact ACP for AA are inter-related and may result in part from historical realities that shape contemporary experience. We know little from the data about how best to improve ACP in AA. That AA appear to prefer informal discussions about ACP to formal documentation of preferences suggests that future research should focus on improving ACP conversations among clinicians, patients, and their families in order to improve the receipt of goal-concordant care at EOL.
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