Abstract
Less than 25% of African American individuals have completed advance directives and are thus vulnerable to poor end-of-life care. Low-cost interventions are needed to increase engagement in advance care planning (ACP). To investigate whether an end-of-life conversation game motivates African American attendees to engage in ACP and to assess whether the game is well received and endorsed. Attendance at an end-of-life conversation game (Hello) played in groups of 4 to 6 participants for 60 minutes. Prospective, mixed-methods cohort study conducted from 2018 to 2019 with a 3- to 11-month follow-up interview. Game events were held in 53 community venues across the US; 15 were purposively sampled for onsite research procedures. Of 428 attendees at purposively sampled sites, 386 (90%) consented to research procedures (6 attendees were removed from analysis for protocol deviation). Of 367 attendees who provided accurate contact information, 232 (63%) were contacted, and 220 were included in follow-up analyses. The primary outcome was advance directive completion rates after the intervention. Secondary outcomes included rates of other ACP behaviors, ACP engagement, conversation satisfaction and realism, and participants' Net Promoter Score (a measure of endorsement). Follow-up telephone interviews explored the game experience and relevant ACP behaviors of attendees. Of 380 individuals who participated (mean [SD] age, 62.2 [13.8] years; 304 were female [80%], and 348 were [92%] African American), none withdrew because of an adverse event. After the intervention, 91 of 220 attendees (41%) completed a new advance directive; 176 of 220 attendees (80%) discussed end-of-life wishes with loved ones, and 214 of 219 attendees (98%) completed at least 1 ACP behavior. There was a moderate increase in the self-efficacy domain on the ACP Engagement Survey (mean [SD] change from before to after the game, 0.54 [0.98]; P < .001). The mean (SD) conversation satisfaction score was 6.21 (0.93) (range, 1-7, with 7 being highest satisfaction), and the overall Net Promoter Score was 57.89 (range, -100 to 100, with 100 being highest endorsement). Interviews revealed 5 themes about the game: (1) it was a useful forum for ACP; (2) it provided new information and perspective; (3) it was emotionally beneficial; (4) it increased appreciation for ACP; and (5) it empowered and motivated participants to perform ACP. Mixed-methods integration showed convergence across data sets. Among a nationwide sample of African American individuals, the end-of-life conversation game appeared to be well received and was associated with high rates of ACP behavior. This low-cost and scalable tool may help reduce health disparities associated with end-of-life care.
Highlights
91 of 220 attendees (41%) completed a new advance directive; 176 of 220 attendees (80%) discussed end-of-life wishes with loved ones, and 214 of 219 attendees (98%) completed at least 1 advance care planning (ACP) behavior
Compared with white individuals living in the United States, African American individuals are less likely to receive end-of-life care aligned with their preferences2-4 and are less likely to receive hospice services
While the percentage of individuals in the US engaging in ACP has nearly doubled to approximately 60% in the last decade, among African American individuals, it remains stagnant at less than 25%
Summary
Compared with white individuals living in the United States, African American individuals are less likely to receive end-of-life care aligned with their preferences and are less likely to receive hospice services.. Compared with white individuals living in the United States, African American individuals are less likely to receive end-of-life care aligned with their preferences and are less likely to receive hospice services.5,6 Such disparities can be addressed in part by advance care planning (ACP)—a process involving conversations about values and preferences for end-of-life care, documentation in advance directives (ADs), and periodic reviews or updates.. Traditional approaches to ACP neglect the 2 most well-documented barriers among underserved populations: mistrust of the health care system and reluctance to discuss dying..
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