Three organizations have developed an advance care planning training program in Illinois for community health workers that could potentially be adapted for other states.

The seeds for the project were planted when the Illinois Public Health Association (IPHA) was awarded a grant by the Health Resources & Services Administration (HRSA). IPHA proceeded to engage the Illinois Hospice & Palliative Care Organization (IL-HPCO) and the HAP Foundation as subject matter experts to help develop the curriculum, as well as the education company Hospice Media, which filmed and designed the modules and workbooks.

“We know that community health workers can play a really crucial role in promoting health and well being in these communities where they have connections and they have cultural similarity and are trusted and more accepted by the community,” Ellen Byne, director of policy and public affairs for IL-HPCO, told Hospice News. “So we thought if we could equip community health workers with the knowledge and the skills that they need to discuss advanced care planning, then they can really empower their communities to do more of this and to document more of what they would like and what they wouldn’t.”

Only about 30% to 35% of the U.S. population has documented their end-of-life wishes, according to Byrne.

The curriculum uses a hybrid model that includes on-demand video modules, workbooks and live instruction over a video-conferencing program. The recorded video pieces feature instruction led by an end-of-life doula, which covers five sections of the program.

While designed initially for the State of Illinois, the educational model is adaptable for us in other states, according to Austin Corbett, video producer for Hospice Media, who worked on the curriculum design.

“There was an intentionality. The training doesn’t necessarily even focus a lot on state specific forms, but it does talk about those fundamental pillars of advance care planning,” Corbett told Hospice News. “And so it would be very broadly usable.”

The HAP Foundation is currently using the training as part of its Community Health Worker Workforce Development and Community Education program, which is also funded by the IPHA’s HRSA grant, Byrne said.

The program includes 144 hours of instruction designed to give community health workers the knowledge and skillsets they need to interact with patients in need of end-of-life planning, according to Rachel Telleen, executive director of workforce development and community education for the HAP Foundation.

The training is made available through the HAP Foundation’s existing learning management system, Telleen said. Community health workers reviewed all of the training materials before they were put to use.

“There are curricula that exist, but creating it and customizing it to a specific audience is critical. If I gave the same presentation, regardless of the audience, you’re not going to have that connection,” Telleen told Hospice News. “But if we could take that curriculum and really understand the audience that we’re delivering it to, then you have a much better chance of having it connect and have an impact. So that was the key component to all the curriculum that we developed. We had to develop it with the audience in mind, which were community health workers.”

A key goal of offering this training to community health workers in particular is reaching populations that are underserved by hospice and the health care system at large, and who are under-represented in advance care planning. This includes communities of color, members of the LGBTQ+ community and those of lower socioeconomic status, among others.

“Community health workers are the voice in underserved populations. So if we can get this training to community health workers, they’re the ones who are chatting with their families,” Telleen said. “They’re working with clients and patients who are facing these same situations.”

A common factor among underserved groups is a lack of trust in the health care system due to a long history of discrimination, neglect and abuse. Engaging community health workers represents a way to foster greater trust, according to Tracey Smith, associate executive director for public health practice at IPHA.

“We’re really trying to establish a trusted professional to help navigate to those services so we see an increase in the uptake. Community health workers are one of the most trusted workforces that is identified, so building upon that momentum of trust makes sense,” Smith told Hospice News. “We really wanted to arm community health workers with the correct knowledge so that when they go out they’re ready for these conversations.”