Low Skepticism and Positive Attitudes About Advance Care Planning Among African Americans: a National, Mixed Methods Cohort Study

Abstract

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.

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 ).

Keywords: End-of-life care; Health disparities; Underserved communities; advance care planning.

Conflict of interest statement

Dr. Van Scoy reported serving as an unpaid scientific advisor to Common Practice, LLC. Drs. Green and Levi are consultants for Vital Decisions, the parent company that owns the electronic version of the advance directive used in this study (My Living Voice). Vital Decisions provided permission to reproduce paper copies of My Living Voice. No other authors have conflicts of interest to disclose related to this research.