Low Skepticism and Positive Attitudes About Advance Care Planning Among African Americans: a National, Mixed Methods Coh
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Department of Medicine, Penn State College of Medicine, Hershey, PA, USA; 2Department of Humanities, Penn State Milton S. Hershey Medical Center, Penn State College of Medicine, Hershey, PA, USA; 3Department of Public Health Sciences, Penn State Milton S. Hershey Medical Center, Penn State College of Medicine, Hershey, PA, USA; 4Hospice Foundation of America, Washington, DC, USA; 5Penn State College of Medicine, Penn State Milton S. Hershey Medical Center, Hershey, PA, USA; 6Department of Pediatrics, Penn State Milton S. Hershey Medical Center, Penn State College of Medicine, Hershey, PA, USA.
BACKGROUND: African Americans have low engagement in advance care planning (ACP). This has been attributed to healthcare distrust and skepticism about ACP. A better understanding of these attitudes is needed to address health disparities related to end-of-life care. OBJECTIVE: To explore the ACP-related values and beliefs of diverse African American communities across the USA and then the perceived value of an inexpensive end-of-life conversational game. DESIGN: Prospective, convergent, mixed methods cohort study involving fifteen underserved, African American communities across the USA. PARTICIPANTS: Of the 428 who attended events at purposively sampled sites, 90% consented to the research; 37% participated in one of 15 focus groups (n = 141). INTERVENTION: An end-of-life conversation game, played in groups of 4–6. MAIN MEASURES: The validated, 7-item ACP values and beliefs questionnaire (scaled 7 = least skeptical, 49 = most skeptical) was administered pre-game. Post-game focus groups explored perceptions about ACP and the intervention. KEY RESULTS: Participants had positive attitudes (low skepticism) about ACP with a median score of 12.00 (7.00, 20.00). Values and beliefs did not significantly differ by geographical region; however, rural areas were observed to be slightly more skeptical than urban areas (median score 14.00 vs. 11.00, p = 0.002). Themes from focus groups converged with survey data showing participants valued the ACP process and consider further engagement in ACP to be worthwhile. Subthemes emphasized the need for and value of ACP.
Prior Presentations Some aspects of this work were presented at the American Thoracic Society Meeting in Dallas, Texas in 2019. Electronic supplementary material The online version of this article (https://doi.org/10.1007/s11606-020-06224-z) contains supplementary material, which is available to authorized users. Received April 29, 2020 Accepted September 7, 2020
CONCLUSIONS: Skepticism about ACP may contribute to low rates of ACP engagement in underserved African American communities. The positive attitudes uncovered in our study either negate previous findings or suggest reduced skepticism. TRIAL REGISTRATION: This study has been registered at clinicaltrials.gov (NCT03456921) KEY WORDS: advance care planning; End-of-life care; Underserved communities; Health disparities J Gen Intern Med DOI: 10.1007/s11606-020-06224-z © Society of General Internal Medicine 2020
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