Millions of African American and Latino patients and their caregivers may want to benefit from free, helpful, end-of-life care and from supplies being delivered to the home or to the nursing home - and hospice programs most often provide this comfort care. However, the word hospice carries a stigma and experts say the program is too often misunderstood by communities of color. Therefore, they say, these communities lag far behind white communities in their use of free hospice service which is covered by Medicare and most health insurance plans.
“About 50 percent of Medicare beneficiaries who are white take advantage of the hospice benefit, but when you talk about communities of color, that number drops all the way down to the mid-30s,’’ said Dave Turner, an African American hospice leader based in metro Detroit. He is vice president of innovation and communities for St. Croix Hospice, a company with 66 hospice programs in 10 Midwest states, including two in Michigan, in Troy and Livonia. For a list of services and locations, go to https://www.stcroixhospice.com/.
Hospice programs offer specialized care for people typically with six months or less to live, though the benefit may be longer if a doctor certifies the person still needs it. Hospice programs provide nurses, home health aides, pain specialists, spiritual counselors and even musicians - along with a wide range of free supplies, from wheelchairs and diapers, to hospital beds, shower chairs, medicines and oxygen.
The programs can greatly assist caregivers by freeing them from duties like bathing, diaper changing or wound care.
This same misinformation can also hinder acceptance of palliative care, a medical specialty with benefits similar to hospice. It’s for people with a serious illness, such as cancer, stroke and heart failure. Most health insurance plans cover palliative care and patients don’t have to be terminally ill. Yet though most major hospital systems offer palliative care, few promote it and it is underused, particularly among people of color.
In 2020, only 7 million of some 90 million Americans with a serious illness received palliative care benefits and just 1.5 million Americans received hospice care, statistics from U.S. hospice and palliative care organizations show.
Experts say that too many in the African American and Latino communities won’t use hospice and palliative care programs because they see it as giving up and instead seek out intrusive, time-consuming, and possibly stressful treatment.
Johns Hopkins Medicine researchers who analyzed racial disparities at the end of life found that African American patients often sought substantially more intensive treatment such as mechanical ventilation, CPR and multiple emergency department visits in the last six months of their life, while more white patients choose hospice care.
The findings underscore the importance of advance care planning directives that African Americans are less likely to have completed that describe their end-of-life wishes, said David L. Roth, director of the Center on Aging and Health at Johns Hopkins, in the August 24, 2021 Journal of the American Medical Association’s Network Open publication.
Turner said hospice and palliative care programs also are underused because primary care doctors and specialists don’t tell their patients about them. Hospitals, too, are to blame for “what I call treating people to death,’’ he said. When people “get a bad diagnosis, you need to stop and ask about the quality of life you will have instead of focusing on quantity.”
Another obstacle is that some caregivers wrongly think hospice means they can’t pray for divine intervention, Turner said. “We tell families, we never stop that intervention. What we are saying is that while they are praying, why not bring in all these wonderful services to help this part of the journey?”
Paula Duren, an African American aging specialist whose mother received hospice care, said hospice is poorly understood. “People need to understand it’s more than having a nurse put morphine in your refrigerator,’’ she said.
She usually explains hospice to others in her Detroit community by starting with “let me talk to you about the free resources they have to support you.”
If they can get beyond the shock, stress and grief they may have about a loved one’s terminal diagnosis, they are happy to hear there is free help and supplies that many spend lots of money buying, she said. “And it’s a coordinated service. They put all these resources under one umbrella.”
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