This time around, it didn’t take long to convince Mary Murphy to embrace the home hospice. When her mother died of Alzheimer’s disease in 2020, she was reluctant until she realized how much help it was. So when her husband, Willie, almost reached the end of his life, she embraced the hospice again.
The Murphy’s home in a leafy part of Nashville is their happy place – full of their treasures.
“He’s nice to me – buy me whatever I want,” she said, as she pulled out a milky glass vase from a floor-to-ceiling cabinet with mirrored shelves.
Willie bought Mary the window to help her 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 failing.
“Are you going to wake up for a minute?” She asked, cradling her head. She patted him on the back as he cleared his throat. “Cough it up.”
Mary had been her husband’s primary caregiver, but is getting help from a new hospice care agency in Nashville focused on increasing the use of end-of-life comfort care by black families. Heart and Soul Hospice is owned and operated by people who share the same cultural background as the patients they aim to serve.
In their application for a certificate of need in Tennessee, the owners of the hospice made it clear that they were black and intended to serve everyone, but would focus on African Americans, who are currently underserved. Data from Tennessee shows that in Nashville, only 19% of hospice patients are black despite making up 27% of the capital’s population.
Although the region already had numerous hospice palliative care agencies, regulators granted Heart and Soul permission to operate, primarily based on the value of educating an underserved group.
During Murphy’s first hospice experience, his mother had been living with dementia for decades. Still, Murphy had concerns about his mother’s transition to a hospice. She felt like she was abandoning her mother.
“My first thought was death,” she said.
National data shows that black Medicare patients and their families do not switch to comfort care as often as white patients. About 41% of black Medicare beneficiaries who died in 2019 were enrolled in a hospice, compared to 54% of white patients, according to data compiled annually by the National Hospice and Palliative Care Organization.
Murphy’s mother survived almost three years in hospice care. The benefit is aimed at people in the last six months of life, but it’s difficult to predict when the end will come, especially in cases of dementia. The hospice provides palliative care for the dying and support for caregivers throughout the process.
Murphy did most of the treatment – which can be overwhelming – but the hospice helped with a few baths a week, medication in the mail, and all the medical equipment they needed.
And most important to Murphy was the emotional support, which mostly came from his hospice nurse.
“Were no doctors going to come here, hold my hand, stay here until the funeral home picked her up,” she said of the day her mother died .
Last year, the day after Thanksgiving, Willie Murphy passed away. And the same hospice nurse was at the Murphy’s home within minutes. She had already stopped that morning to check that he was okay and returned as soon as Mary called and told him he was not breathing.
“If you don’t feel like, ‘Oh my god thank god i have a hospice’, if you can’t say that then we are doing something wrong,” said Keisha Mason, director of nursing. by Heart and Soul.
Mason, like Murphy, is black and has said that in his opinion nothing fundamental prevents black patients from using hospice care except learning what the service can offer and that it is basically free for people to use. patients – paid for by Medicare, Medicaid and most private health plans.
“I tell them, ‘If you see an invoice, call us because you shouldn’t,'” she said.
As Mason helped launch this new hospice hospice agency, she began to use new language, labeling hospice more than medicare. She describes it as a right.
“Just as you are entitled to unemployment, like you are entitled to Social Security, you are entitled to palliative care allowance,” she said.
Investors in Heart and Soul include David Turner, owner of CNS Hospice in Detroit; the pastor of Nashville, the Reverend Sandy McClain; and André Lee, a former hospital administrator on the campus of Meharry Medical College, a historically black institution in Nashville.
Lee and Turner have also started a black-focused hospice care agency in Michigan and plan to replicate the model in other states.
More and more families must consider palliative home care as an alternative to end-of-life care, Lee said. Retirement homes are expensive. And even with Medicare, a hospital bill can be hefty.
“You’ll go in there and they’ll eat you alive,” he said. “I hate to say [something] bad for hospitals, but it’s true.
Palliative care research has not provided clear reasons for the gap between the use of the benefit by white and black families. Some experts believe this is linked to spiritual beliefs and a widespread distrust of the medical system due to decades of discrimination.
The hospice palliative care industry’s national trade group, NHCPO, has released a diversity and inclusion toolkit and guide to reaching more black patients. He recommends connecting with influential DJs, teaming up with black pastors, and just hiring more black nurses.
Closing the gap is not too complicated, said Lee.
“A lot of hospices don’t employ enough black people,” he said. “We all feel right at home when you see someone out there who looks like you. “
Well-established hospice palliative care agencies have attempted to minimize barriers with their own diversity initiatives. Michelle Drayton of the Visiting Nurse Service in New York City said her large agency has met with ministers who advise families struggling with failing health.
“Many of them did not fully understand what the hospice was,” she said. “They had a lot of the same kind of misconceptions.”
Every hospice care business, whether it’s a newcomer or one of the oldest in the country, can promote end-of-life education and reduce disparities in care, Drayton said. “We’re not just handing out a brochure,” she added.
This story is part of a partnership that includes Nashville Public Radio, NPR and KHN.
|
|
