Project Talk Seeks Best Advance Care Planning Practices for Dementia Patients in Underserved Groups

A new extension of Project Talk, an ongoing effort to test advance care planning interventions in underserved communities, is zeroing in on the needs of dementia patients.

Penn State Milton S. Hershey Medical Center, Hospice Foundation of America (HFA), and the University of Kentucky launched Project Talk last year. The five-year project aims to boost the utilization of advance care planning among African American, Hispanic and rural populations, funded by a $3.5 million grant from the National Institutes of Health (NIH).

“NIH has become very interested in Alzheimer’s and related dementia, and we’ve always been interested in that because, that’s sort of one of the main reasons that we do advanced care planning. Patients with dementia often lose their faculties and are unable to make their own decisions,” Lauren Jodi Van Scoy, M.D., director of the Project Talk Communication Lab, told Hospice News. “So when we saw that the NIH had an announcement about out broadening projects into the Alzheimer’s space, it just seemed like a perfect fit for our trial and sort of the next logical step.”

Van Scoy is professor of medicine, humanities, and public health sciences at Penn State.

Project Talk is testing two specific advance care planning interventions. The experiment is looking at whether a gamified approach or a community-based workbook is more effective or if are they equally effective when it comes to improving advance care planning utilization.

One-third of the participants will use a conversation game called Hello as a springboard for discussions of goals of care and end-of-life wishes. The second intervention uses a workbook from The Conversation Project that takes a non-gamified, more traditional methodology.

The project partners with community organizations and leaders to host events that feature these activities. To date, Project Talk has enrolled 30 hosts in 20 states and completed 10 events thus far with a total of 204 individual participants.

The new arm of the project focused on dementia patients is focused exclusively on the Hello game.

“We feel that the Hello game has the lowest cognitive load, so to speak, as far as it being an intervention that might be well-suited for this particular type of individual and their families,” Van Scoy said. ‘We’re looking to enroll about 120 people in the first phase, having them participate in Hello events to see if it works similarly for them [compared to other patients], or if there are any barriers or challenges or issues that we haven’t anticipated.”

In subsequent phases, researchers will refine the tool based on their initial findings and do a second set of events with a new sample of 120 people.

Prior studies have shown that advance care planning can boost hospice and palliative care utilization, reduce hospitalizations and health care costs, and align the delivery of care with patient wishes. But societal factors and poor coordination among health care providers can limit its effectiveness.

Though interest in advance care planning has gained steam among people of color during the pandemic, utilization and access still lag, which in turn may be among the factors that contribute to fewer members of those communities electing hospice.

About 82% of hospice patients in 2018 were White, compared to 8.2% for African Americans and 6.7% for Hispanics, according to the National Hospice & Palliative Care Organization. The total for all other racial or ethnic demographics totaled 3.1%.

“There are multiple reasons. A main one is lack of access to health care, lack of health care equity, a reluctance culturally to discuss end-of-life care in particular,” HFA President Amy Tucci told Hospice News. “Health care providers never asked the underserved what they want at the end of life, or what kind of considerations they’d like to make. It’s not unlike the hospice conundrum with underserved populations. It’s often not properly explained.”