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Spiritual hospice care providers are an important link to building bridges of access and trust among underserved African American populations.
Spirituality plays a key role in end-of-life decisions among African Americans, making hospice chaplains a significant part of reaching these populations, according to Saul Ebema, president of Illinois-based Hospice Chaplaincy.
“Faith is very important to African Americans,” Ebema told Hospice News. “Their spirituality encompasses their everyday life. It requires worship and devotion, and a sense of retribution that everything good you get from faith and everything bad is a punishment. What I’ve noticed is that the strong faith in this community can almost view hospice as a conflict. Choosing hospice can be like giving up on your faith. So, many in this community refuse hospice because of that.”
Understanding the spiritual barriers to address
Recent research has unveiled racial and ethnic differences in hospice utilization among Medicaid-only and dual-eligible decedents. A study recently published in the JAMA Network examined Hispanic and non-Hispanic Black individuals in both Medicaid-only and dual-eligible populations. Black populations had the lowest likelihood of receiving hospice services compared to white decedents, the study found.
Having a historical context of understanding around the faith-based barriers among African American populations is a significant part of improving utilization, according to Wayman Scott, associate director of diversity, equity, inclusion and community relations at Maryland-based Gilchrist. The hospice and palliative care provider also offers advance care planning and grief counseling services.
Scott also has a background in hospice chaplaincy and serves as chair of the diversity committee at the Hospice & Palliative Network of Maryland.
“It’s having the context of faith and the idea of spiritual suffering connected to these patients,” Scott told Hospice News. “The place of worship has been a space where Black people can come and feel safe. It’s looking at it from a faith-based lens and how these health care services can help guide the dying process, not hasten it. Organizations and places of worship can almost serve as gatekeepers helping to provide access and awareness in hospice. If a hospice provider does not have that cultural sensitivity and ability to connect on that spiritual level, then how can they respond to these community’s needs?”
A nationwide survey from Pew Research Center in 2020 of more than 8,600 African Americans found that nearly three-quarters identify their belief system as some type of Christian faith, while 3% identify as non-Christians. The majority (66%) of these individuals attended places of worship with predominantly Black congregations, the study found.
Chaplains are a large part of building and growing relationships within African American faith communities and communicating the interdisciplinary services that can help support their end-of-life trajectories, according to Scott.
“When connecting with patients, it’s important to respond in kind with their faith and ‘get spiritual’ with them,” Scott said. “They may have strong emotions, and it’s important to be able to grieve, mourn and experience that anticipatory grief in the context of faith. Because spirituality is so strong in the Black community, it’s important to build trust and form relationships in faith groups in terms of bridging the gap.”
Spiritually among African American communities is rooted in a history of resilience and faith alongside experiences of oppression and discrimination, said Shaul Praver, staff chaplain and rabbi at NYU Langone Health. The health system offers hospice and palliative care, along with urgent and emergency services, primary and pediatric care, as well as women’s health services, among others. Its service region spans three counties in southeast New York, the New York City metropolitan area, New Jersey and Florida.
The discriminatory experiences have led to mistrust in the health care system at large, as well as underutilization of end-of-life care, Praver indicated. Spiritual care providers are an important part of addressing historical mistrust issues, according to Praver.
Increasing trust and hospice utilization among African Americans includes developing culturally relevant and faith-based communications, Praver said.
“As chaplains, we serve a crucial role in community outreach, bridging the gap between African American communities and medical institutions by addressing historical mistrust through deep and compassionate listening and facilitating access to end-of-life care services,” Praver told Hospice News in an email. “To provide culturally competent hospice care, it is imperative to understand and address this mistrust.
Carving spiritual care into health equity reimbursement initiatives
A lack of supportive payment pathways are part of the access equation, Praver stated.
“Reimbursement systems should incentivize hospices to prioritize spiritual care and address mistrust through health equity payment initiatives,” Praver said. “By integrating these approaches, hospices can strive towards providing dignified and culturally sensitive care for African American patients.”
Reimbursement avenues focused on improving disparities are widening in and around hospice. Case in point, the Center for Medicare & Medicaid Innovation (CMMI) in 2021 announced a “strategy refresh” that included focus on health care equity in payment model design. The Accountable Care Organization Realizing Equity, Access and Community Health (ACO REACH) program is among the models to begin using this approach.
Effective Jan. 1, 2023, the model requires participating providers to develop and implement a robust health equity plan that both identifies underserved communities and lays out initiatives aimed at measurably reducing health disparities within their beneficiary populations.
While a step forward in building up financial resources aimed at improving equitable access, the reimbursement channels often fall short of components that focus on spiritual care delivery, according to Scott.
Increasing community engagement efforts can come with staffing and operational costs, he said. However, the return on investment comes with “profoundly valuable” insight from community members on ways to shape hospice care models that are more culturally and spiritually inclusive, Scott stated.
“It can cost money to hold focus groups and listening sessions in your community and then analyze the feedback with written reports and data,” Scott said. “But a chaplain is someone without that can bridge that gap of trust and access. Spiritual care is not directly reimbursable work in the same way as clinicians or social workers are getting reimbursed [and] that can create great barriers. If we were to update and enhance the reimbursement model to be more inclusive toward chaplains, that would translate to hospices having a more robust chaplaincy service.”
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