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When it comes to end-of-life care, one hospice is making a difference in the lives of Black families. Heart and Soul Hospice, of Nashville, Tennessee, is a Black-owned hospice organization that focuses on the needs of Black families facing their own mortality. 

Heart and Soul, which is supported by a local Nashville pastor and a former hospital administrator for a Historically Black College and University (HBCU) medical campus, provides culturally relevant comfort care for Black families. While their Medicare and Medicaid contract states they will offer care to anyone, the organization makes it clear that they focus on end-of-life care and respite for Black families. 

Despite competing with other local hospice organizations, Heart and Soul has been provided a Certificate of Need by the state of Tennessee. In their application, Heart and Soul noted that they are providing exceptional care for an underserved population. 

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André Lee, administrator and co-founder of Heart and Soul Hospice, stands with Keisha Mason, director of nursing, in front of their office building last week in Nashville, Tenn.
Erica Calhoun for NPR

Black families less likely to enter hospice care, more likely to distrust medical establishment

In Tennessee, where Heart and Soul is located, just 19% of hospice patients are Black, despite Black families making up 27% of the population. Some professionals note that many Black families experience distrust of the medical establishment, stemming back to the Tuskegee Experiments and the case of Henrietta Lacks, whose cells were stolen without providing credit to the family. 

For these and other reasons, Black families do not lean on hospice as frequently as their White counterparts. Just 41% of all Black Medicare beneficiaries enroll in hospice for end-of-life care, compared to over 50% of White Medicare beneficiaries.

And that’s a statistic that Heart and Soul aims to change through their care. According to Keisha Mason, Heart and Soul’s director of nursing, “If you don’t feel like, ‘Oh my God, thank God I have hospice’, if you can’t say that, then we’re doing something wrong.”

Empowering Black families in need of hospice care

She also confirmed that families on Medicaid, Medicare, or private insurance are typically not charged for using the service. “I say to them, ‘If you see a bill, then call us, because you should not.’”

Hospice is typically offered to provide care for those who have six months or less to live, although many people who are on hospice care live for longer. No patient is turned away, as hospice care is a benefit for those who have insurance.

That lack of knowledge about hospice is another battle that Heart and Soul aims to fight. Many people do not realize that just like social security, hospice care is an entitlement for all people. 

Meanwhile, other hospice agencies are beginning to focus on the needs of Black patients, and other underserved populations, to the delight of their families. According to Andre Lee, the former hospital administrator on the campus of Nashville’s Meharry Medical College, “A lot of hospices don’t employ enough Black people. We all feel comfortable when you see someone over there that looks like you.”

Erika Stone is a graduate student in the Master of Social Work program at the University of Oklahoma, and a graduate assistant at Schusterman Library. A Chess Memorial Scholar, she has a B.A. in Psychology...