This time, it didn鈥檛 take much persuading for Mary Murphy to embrace home hospice. When her mother was dying from Alzheimer鈥檚 disease in 2020, she had been reluctant until she saw what a help it was. So when her husband, Willie, neared the end of his life, she embraced hospice again.
The Murphys鈥 house in a leafy Nashville neighborhood is their happy place 鈥 full of their treasures.
鈥淗e鈥檚 good to me 鈥 buys me anything I want,鈥 she said, as she pulled a milky glass vase out of a floor-to-ceiling cabinet with mirrored shelves.
Willie bought Mary the display case to help her to show off the trinkets she picks up at estate sales.
Down the hall, Willie was lying in their bed, now unable to speak. His heart was giving out.
鈥淵ou gonna wake up for a minute?鈥 she asked, cradling his head. She patted his back while he cleared his throat. 鈥淐ough it out.鈥
Mary had been the primary caregiver for her husband, but she gets help from a new hospice agency in Nashville focused on increasing the use of end-of-life comfort care by Black families. is owned and operated by people who share the same cultural background as the patients they aim to serve.
In their to obtain a certificate of need in Tennessee, the hospice owners made it clear they are Black and intend to serve everyone but will focus on African Americans, who are currently underserved. Tennessee data shows that in Nashville just 19% of hospice patients are Black although they make up 27% of the capital city鈥檚 population.
Though the area already had numerous hospice agencies, regulators granted Heart and Soul permission to operate, based primarily on the value of educating an underserved group.
In Murphy鈥檚 first hospice experience, her mother had been living with dementia for decades. Still, Murphy had concerns about transitioning her mother to hospice. She felt as if she was giving up on her mom.
鈥淢y first thought was death,鈥 she said.
National data shows that Black Medicare patients and their families are not making the move to comfort care as often as white patients are. Roughly 41% of Black Medicare beneficiaries who died in 2019 were enrolled in hospice, compared with 54% of white patients, according to compiled annually by the National Hospice and Palliative Care Organization.
Murphy鈥檚 mother survived nearly three years on hospice. The benefit is meant for those in the final six months of life, but predicting when the end will come is difficult, especially in cases of dementia. Hospice provides palliative care for the dying and support for caregivers for a long as the process lasts.
Murphy did most of the caregiving 鈥 which can be overwhelming 鈥 but hospice helped with a few baths a week, medication in the mail and any medical equipment they needed.
And most important to Murphy was the emotional support, which came mostly from her hospice nurse.
鈥淲asn鈥檛 no doctor going to come here, hold my hand, stay here until the funeral home came for her,鈥 she said about the day her mother died.
Last year, on the day after Thanksgiving, Willie Murphy died. And the same hospice nurse was at the Murphy home within minutes. She鈥檇 already stopped by that morning to check on him and returned as soon as Mary called and told her he wasn鈥檛 breathing.
鈥淚f you don鈥檛 feel like, 鈥極h my God, thank God I have hospice,鈥 if you can鈥檛 say that, then we鈥檙e doing something wrong,鈥 said Keisha Mason, Heart and Soul鈥檚 director of nursing.
Mason, like Murphy, is Black and said that in her view there鈥檚 nothing fundamental keeping Black patients from using hospice except learning what the service can offer and that it鈥檚 basically free to patients 鈥 paid for by Medicare, Medicaid and most private health plans.
鈥淚 say to them, 鈥業f you see a bill, then call us, because you should not,'鈥 she said.
As Mason helped launch this new hospice agency, she began using new language, calling hospice more than a Medicare benefit. She describes it as an entitlement.
鈥淛ust as you are entitled to unemployment, as you are entitled to Social Security, you are entitled to a hospice benefit,鈥 she said.
The investors in Heart and Soul include , owner of CNS Hospice in Detroit; Nashville pastor the Rev. ; and Andr茅 Lee, a former hospital administrator on the campus of Meharry Medical College, a historically Black institution in Nashville.
Lee and Turner also started a Black-focused agency in Michigan and have plans to replicate the model in other states.
More families need to consider home hospice as an alternative for end-of-life care, Lee said. Nursing homes are pricey. And even with Medicare, a hospital bill can be hefty.
鈥淵ou鈥檒l go in there and they鈥檒l eat you alive,鈥 he said. 鈥淚 hate to say [something] bad about hospitals, but it鈥檚 true.鈥
Hospice research hasn鈥檛 come up with clear reasons to explain the gap between white and Black families鈥 use of the benefit. Some experts speculate it鈥檚 related to spiritual beliefs and widespread mistrust in the medical system due to decades of discrimination.
The hospice industry鈥檚 national trade group, the NHCPO, released a diversity and inclusion and a to reaching more Black patients. It recommends connecting with influential DJs, partnering with Black pastors and simply hiring more Black nurses.
Bridging the gap is not overly complicated, Lee said.
鈥淎 lot of hospices don鈥檛 employ enough Black people,鈥 he said. 鈥淲e all feel comfortable when you see someone over there that looks like you.鈥
Well-established hospice agencies have attempted to minimize barriers with their own . Michelle Drayton of Visiting Nurse Service of New York said her large agency has met with ministers who counsel families dealing with failing health.
鈥淢any of them did not fully understand what hospice was,鈥 she said. 鈥淭hey had many of the same sort of misperceptions.鈥
Every hospice company, whether it鈥檚 an upstart or one of the nation鈥檚 oldest, can promote end-of-life education and ease care disparities, Drayton said. 鈥淲e鈥檙e not just handing out a brochure,鈥 she added.
This story is part of a partnership that includes聽,听聽and KHN.