An end-of-life care planning module deployed in community centers boosted the number of black patients who completed advance directives by 41 percent, according to a new study published in JAMA Network Open.
This data underscores a key, scalable strategy for addressing health equity issues during end-of-life care planning, the researchers said.
Currently, fewer than one-quarter of black patients have a completed advance directive, a critical document for ensuring patients receive the type of care they want at the end of their lives.
“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,” the researchers, hailing from the University of Pennsylvania Medicine, said.
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“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.”
A completed advance directive is associated with fewer unwanted end-of-life procedures, increased hospice use, and decreased psychological stress at the end of life, the researchers reported. There is some evidence that completed advance directives are also tied to lower healthcare costs at the end of life.
But again, advance directives are seriously wanting among minority communities, including black populations. Foremost, end-of-life care planning is often done via one-to-one patient-provider interactions, which are time-intensive and difficult to scale, the research team noted.
Additionally, black populations are often reticent to discuss the end of life and place trust in the healthcare system, two barriers that are central to advance care planning.
The module, entitled “Hello,” sought to overcome those barriers. The module works to facilitate end-of-life care planning conversations among four participants over the course of about 60 minutes. The game costs $2.50 per participant and was deployed in influential community settings, like places of worship or community centers.
The game prompted participants to share certain medical and non-medical information about themselves, like the three non-medical facts a provider should know to deliver quality end-of-life care. These questions were designed to spark free-flowing conversation between participants, engaging them to think about their end-of-life wishes and to put those wishes to paper via an advance directive.
This approach proved effective, the researchers found using follow-up interviews with 220 module participants.
“Finding new and innovative ways to engage this hard-to-reach community in ACP is a critical first step toward reducing health disparities associated with end-of-life care for underserved populations,” the research team stated.
“Our data indicated that the game events were well attended and highly endorsed. These data suggest that the game intervention was not only feasible to implement but also acceptable in African American communities, in which reticence for discussing end-of-life issues has been well documented.”
Forty-one percent of all program participants moved on to complete an advance directive, the team said. Another 80 percent said they discussed end-of-life wishes with a loved one, while 98 percent said they completed at least one secondary advance care planning behavior, such as reviewing advance care planning resources.
Participants were also largely satisfied with the module, with none of them pulling out of the conversation because they were having a negative experience, the team reported. Participants rated their satisfaction a 6.1 on a seven-point scale and rated their likelihood to recommend a 57.89 on a 100-point scale.
Delivering the module in community centers was at the crux of the program’s effectiveness, the researchers asserted.
“Such an approach is particularly appropriate in communities that may distrust or are less likely to use the health care system,” they said. “Our qualitative data suggest that participants appreciated having the activity hosted within their social and faith-based communities, which in turn provided opportunities to share and learn from the experiences of trusted peers.”
“This may be particularly salient within African American communities with strong reliance on social networks for information dissemination,” they added.
Leaning on community-based partners may have also made it easier for patients to participate in the modules, thus increasing the number of individuals learning more about advance care planning.
The format of the module, which the researchers also referred to as a game, was another strength. The modules made end-of-life care discussions less of a taboo and more comfortable for individuals.
“The game overcomes this barrier by reframing these discussions as an enjoyable activity in which players share stories, laugh, and learn from one anothers’ experiences,” the research team pointed out. “Using a social, conversation game helps establish psychological safety—the shared belief that individuals in a group can bring up risky topics or ideas.”
Future research could look at impact based on community-based intervention site, helping to uncover if a church or a community center may be more effective for carrying out the intervention. Current evidence shows limited difference, although that was not a direct measure for the study.
Additionally, future iterations of the research may use more measures that less dependent on self-report.
Nonetheless, this was a promising first step in closing the disparities in end-of-life care planning, the team said. Ideally, closing this health equity gap will improve the quality of care ethnic minorities receive toward the end of their lives.
Source: PatientEngagement HIT