Death Doulas, Community Health Workers Collaborations Can Aid Hospices, But Resources Are Scarce

End-of-life doulas (EOLDs) and community health workers can add an additional layer of support that can help hospices improve connections and outcomes among patients and families. However, building these collaborations has come with financial barriers.

EOLDs have had a growing presence in the serious illness and end-of-life care space, but their services are not reimbursed by Medicare or other insurance, according to Jane Euler, co-founder and chief doula of Present for You LLC.

This can impact access to end-of-life care – particularly among underserved populations, she said at a recent conference by the Coalition to Transform Advanced Care (C-TAC) and the Center to Advance Palliative Care (CAPC).

“There is no formal mechanism to provide payment for these important services under a fee-for-service system. This creates incredible barriers to access and equity,” Euler said during the C-TAC-CAPC Leadership Summit in Washington, D.C. “The human-based doula support is best positioned as part of value-based, at-risk entities or hospice per diems. We need innovative leaders willing to step outside the boundaries of traditional fee-for-service and carve out plans to pay for complementary, augmented services from lay people such as doulas. We need to find mechanisms for payment.”

Payment barriers to building, sustaining doula, community worker collaborations

Death doulas and community health workers have important roles to play in connecting terminally ill patients with hospices and other resources, according to Jamil Rivers, CEO and founder of The Chysalis Initiative.

Established in 2019, the Philadelphia-based organization provides training and education for community health workers who help breast cancer patients obtain health care services and other forms of support. Rivers launched the organization to improve health disparities among Black women with breast cancer.

Community health workers and EOLDs can be “patient navigators” that guide patients and families through the health care system, but these professionals are often insufficiently paid, Rivers indicated.

“It really needs to be embedded in our framework when we think about how care is being paid for and covered, whether it’s a community health worker [or doula],” Rivers said at the summit. “They are the enhanced patient navigation that really should be incorporated in our standard of care. We have all these disparate outcomes where we’re really not meeting the bar as far as what’s needed.”

Payment mechanisms and the scope of EOLD and community health worker services vary widely based on local and state funding, Rivers explained.

“Having the resources for end-of-life care [support] depends on the state or county that we’re working in. It’s contingent on payers and what is covered and what is not,” Rivers said. “It’s really important when thinking about what’s involved and the value [community health workers] bring. We lean on the industry, and half of our funding is covered by philanthropy. We have to increase funding. It’s really advocating and pushing on leaders, policymakers and insurance companies to see the benefits of how these services extend [and] improve quality of life for patients and ensure that they’re getting the care they actually need.”

Death doulas offer “great potential” to bring community care to populations that traditionally haven’t been able to access palliative or end-of-life resources, Euler said. They can provide assistance in addressing emotional aspects of serious and terminal illness, as well as provide respite for taxed caregivers, she stated.

Doulas can help patients find a hospice earlier in their disease trajectories, Euler indicated.

Euler’s organization, Present for You, helps families navigate the nonmedical aspects of serious illness care, including legal, financial and practical challenges. It also helps them reach transitional and supportive care such as palliative, hospice and programs to address social determinants of health.

The Virginia-based organization has launched a supportive staffing model with Goodwin Hospice, a provider in its home state. The nonprofit hospice is part of Goodwin Living health system, which provides senior living and aging health care services in northern Virginia.

Through the model, Present for You’s death doulas work with social workers and spiritual care providers at Goodwin Hospice to provide “extra touches,” Euler stated. Since piloting the program nearly a year ago, the doulas have helped support around 80 patients and provided more than 400 encounters and visits with families across the Goodwin health system, she said.

One further consideration related to the possibility of Medicare funding for EOLDs is that it would likely come with regulatory oversight that could change the way they interact with health care providers, Euler stated.

“Everyone’s needs are unique and so different, and that’s where I think doulas are most powerful, because we don’t need to follow a protocol necessarily,” Euler said. “It’s going back and forth about whether we’re going to be paid by payers, because then we have to abide by rules. We don’t have a prescribed role. We enter situations and figure out where there is need by conversation and a relationship from a nonmedical approach.”