Using a conversation game to engage Native American Washoe tribe members in advance care planning: preparation for a clinical trial

Approximately 8.75 million Native Americans (NA) reside in the United States and approximately 10.2% are over the age of 65.1,2 NA elders experience higher health burdens and shorter life expectancies than other populations. Advance care planning (ACP)– is a process that involves having conversations between patients, family members, and clinicians about one’s goals or wishes for end-of-life care, and then documenting decisions in an advance directive. When introduced early in illness trajectories, ACP reduces the likelihood of poor end-of-life care for patients and improves long-term psychological outcomes for decision-makers. Previous research has found that NA tribal members are both interested and willing to discuss ACP but that there are substantial gaps in opportunities for NAs to engage in ACP. The long-term goal of this research is to explore how to increase ACP engagement for Native communities, specifically the Washoe Tribe. The Hello game is an evidence-based ACP conversation tool that involves groups of players responding to open-ended questions related to their goals, values, and beliefs about end-of-life issues and then discussing responses with one another. Hello may be particularly well suited for NA groups because it has a natural inclination toward storytelling and group connection, which are highly valued in most NA tribes. The objective of this R34 planning grant is to continue our partnership with the Washoe Indian Tribe to explore how Hello could be adapted for the Washoe tribe and to prepare for a cluster randomized trial assessing its impact on tribal ACP behaviors. We will pursue two specific aims. First, we will expand our partnership with the Washoe tribe to further explore the needs, motivations, and challenges related to ACP and end-of-life decision-making for tribal members and explore how findings converge or diverge from other populations and across Washoe reservations (Aim 1). To do so, we will conduct talking circles with tribal members from each of the 4 Washoe reservations (n=48) to explore beliefs about and motivations for ACP, if and how storytelling plays a role in ACP and define meaningful and appropriate ACP outcomes. Then we will adapt the game based on those findings and test the adapted game for use by the Washoe tribe and test procedures for measuring impact of the game on ACP engagement (Aim 2). To do so, we will enroll n=60 participants who will play the adapted Hello game. Outcomes (ACP engagement and AD completion) will be collected 3 months later. The impact of the future R01 trial will be to improve Washoe population and community health by providing opportunity for appropriate ACP interventions to increase the likelihood that Washoe tribe members engage in ACP and complete advance directives, thereby furthering their self-determination for future healthcare in a way that is consistent with their goals, values, and beliefs.