- The African American community has historically been reluctant to use hospice services.
- Experts say mistrust of the medical profession and a lack of knowledge about hospice organizations are two of the reasons.
- Organizations are now reaching out to African American families through churches, barber shops, hair salons, and community groups to encourage them to use hospice services.
“I was aware of it a little bit, but I associated them (hospice organizations) with cancer. So, it carried a kind of stigma for me.”
That’s how Tyrone Bradley describes his thought process before he eventually got hospice care for his 95-year-old mother before she died in 2020.
“You just don’t want to give up and be the one who makes that decision. There’s a lot of guilt associated with being the one to make the decision,” the Virginia architect told Healthline.
Bradley is African American, a demographic experts say is not embracing hospice or end-of-life care as often as their white counterparts.
According to the latest statistics from the National Hospice and Palliative Care Organization (NHPCO), nearly 54 percent of white Medicare patients used the Medicare hospice benefits versus roughly 41 percent of Black Medicare patients enrolled in hospice.
Judi Lund Person, MPH, CHC, the vice president for regulatory and compliance for NHPCO, has worked in hospice for 40 years. She says progress is being made, but the racial disparities go back decades.
“In the early days of hospice, it was considered a white person’s benefit, ” Lund Person told Healthline. “One of the things that has changed is that hospices around the country are making sure that the patients we serve reflect the community.”
But there continues to be some hesitancy in the Black community to embrace hospice care.
Why?
Experts interviewed by Healthline pointed to cultural differences, trust, and a lack of information about how hospice care can help.
Arion M. Lillard-Green, MHA, MTS, BCCC, BCPC, is an educator with the Hospice Foundation of America and spiritual counselor at the Goodwin House Palliative Care and Hospice in Falls Church, Virginia.
She says families often aren’t given adequate information about a diagnosis or an outline of what they can expect.
“There may be a misunderstanding of the disease trajectory,” Lillard-Green told Healthline. “Sometimes there is a lot of discomfort on behalf of providers on how to have difficult conversations.”
She added that many people just want to hold onto hope, and if they sign up for hospice care, they feel like they’ve given up hope.
“When you start analyzing and going deeper into why there is such disparity, a lot of it starts with culture,” said Ernesto Lopez, chief executive officer of Hospice of Washington County in Hagerstown, Maryland.
“A lot of cultures are more inclined to take care of their own at home,” Lopez told Healthline. “They feel like that’s their responsibility as an adult child to do that for their parents and grandparents.”
Lopez says there is also the issue of trust.
“There’s also a tremendous amount of distrust from the African American community toward healthcare and the government that’s embedded in a lot of these communities,” he said.
That lack of trust among African Americans in healthcare goes back decades to the Tuskegee study and the research around
Heart and Soul in Nashville, Tennessee, is one of possibly only a few Black-owned hospices around the country.
The organization opened a year ago to provide service to all races but specifically to target the underserved African American community.
Heart and Soul officials told Healthline they plan to open another site next in Louisville, Kentucky. They hope a Black-owned hospice can help ease some of the concerns of African American families.
Keisha Mason is the director of nursing at the Heart and Soul Nashville location.
“We don’t know how many others are doing what we are doing,” she told Healthline. “I hope we’re not the only ones, but I believe it’s just a few.”
Mason says her group has been reaching out to physicians who serve the Black community in Nashville to get the word out to families.
She adds they are also looking toward the future.
The organization has partnered with Meharry Medical College in Nashville, a historically Black institution. The partnership program helps train future physicians about what hospice is and what it can offer.
“Some of the fourth-year students are actually volunteering with us,” Mason said. “We send them out to sit with hospice patients and see that not everyone here is on their last breath. They get to see the improved quality of life those patients have.”
Mason says it’s a lesson the medical students will take with them as they go into practice. The hope is that they will help African American families plan for end-of-life care.
“When you can get them at the early stages of their training, it becomes part of what they do,” she said.
The NHPCO has put together an Inclusion and Access Toolkit.
It suggests ways organizations can reach out to African American faith-based and community organizations to get the word out about the help hospice can offer families.
Multiple experts told Healthline that word of mouth from a trusted source makes a difference.
“In North Carolina where I used to live… one of the things some of the hospice organizations did that had a huge impact was to go to hair salons and barber shops,” said Lund Person. “They would talk to the hairdressers and barbers about good end-of-life care and suggest how they could bring it up with families while they were doing their hair.”
Lillard-Green says a big part of the plan involves working with and encouraging primary care physicians, oncologists, and nurses to be culturally sensitive to guide families toward making end-of-life care plans.
She says that’s especially true since the COVID-19 pandemic. Church and community gatherings have been mostly on hold.
“We need to be more intentional about addressing their needs,” she said.
Bradley says his niece worked at a nursing home that got him more information about hospice care. Then he met with a hospice team. He says it all worked out well.
“I’m a big proponent of it now… I would advocate for it,” he said.