City programs pitch African-Americans on the benefits of hospice care

As hospice grows in popularity, black community has low participation rate

December 18, 2013|By Jonathan Pitts, The Baltimore Sun

Shirley Kane didn't think she could take it any more.

Her 87-year-old mother, diagnosed with terminal cancer, was bedridden at home. Kane was the only person feeding her, sorting out her medications, keeping her clean. The job was so overwhelming that she abandoned her own activities, forsook her own health needs and sank into depression.

"They say the caregiver goes first," Kane says. "I almost felt like I didn't want to live anymore."

Then the 64-year-old did something studies show is exceptional among her fellow African-Americans. She placed her mother, Ruth Franklin, in hospice, a health care setting that focuses not on extending life for the terminally ill but on embracing the inevitable end with compassion.

Although hospice care has dramatically increased in popularity over the past few decades, of the 1.6 million Americans who used such services last year, about 82 percent were Caucasian and fewer than 9 percent African-American. And in Maryland, predominantly white localities finish near the top in terms of hospice use.

"In the black community, you rarely hear people even talk about hospice, and when you do, people tend to be wary about it," says G.I. Johnson of the Office of Aging and Care Services, a division of Baltimore's health department.

Now local health officials are trying to do get more African-Americans interested in hospice care by enlisting a group — ministers —with unique access to the discussion of end-of-life issues.

Last month, the city rolled out an outreach program by sponsoring a conference at Morgan State University. About a dozen hospice care professionals, most of them African-American, extolled the benefits of end-of-life care to an audience that included about 200 black ministers.

"This is a well-kept secret that has been around for a long time," said the Rev. Clarence Dow of St. Stephen's Baptist Church in Temple Hills, an attendee. "The African-American community really hasn't used hospice. There has been a lack of care at the end of life."

Dow said he planned to share what he'd learned with others in his congregation.

First made available in the U.S. during the 1970s, hospice care is an option for any patient whose physician determines that his or her illness is terminal — that is, it can no longer be cured and will cause the patient's death within a short period of time. Health officials are increasingly promoting the service as a humane alternative to keeping the terminally ill alive for as long as possible no matter the costs.

Hospice care can last just a few days or several months, depending on the circumstances. About two-thirds of hospice care takes place in the patient's residence, as Franklin's does. The rest occurs in dedicated inpatient facilities.

Hospice teams typically include physicians, nurses, social workers and ministers trained and certified in the field, all of whom have the aim of bringing comfort to dying individuals and their families in the months, weeks or days they have left together.

That can mean family members granting those patients "permission" to let go of life when they feel ready. It can mean providing patients with pain medication or nursing services, supplying favorite books or music, helping resolve differences with relatives and even offering aid with lingering financial issues.

Kane is glad she made the decision to place her mother in the care of staffers at Gilchrist Hospice Center; they have tended to Franklin since January. "They've made this time so much better than it would have been without them," she says.

Kane says Franklin's home-care aide, Cherylita Richardson, brings her mother's favorite foods, helps her use Facebook to stay in touch with friends and speaks with her about spiritual matters.

"When Cherylita comes, it's like a beam of sunshine in our lives," she says.

Studies suggest that one barrier to broader hospice use among African Americans is a set of broad cultural beliefs that touch on religion and attitudes toward the health care system. Another is a widespread assumption that hospice is prohibitively expensive.

Medicare, Medicaid and a number of private insurers cover virtually all costs, city health officials said, and patients are given the choice of returning to traditional care.

Johnson, an African-American who has dealt with aging issues for more than three decades, spends much of his time visiting with black faith leaders in the city, and he started hearing years ago that death is a hot conversation topic — more specifically, the painful, awkward ways in which many elderly African-Americans have been dying.

"Everyone seems to have a story about going through a situation with family members [in which] we wish we'd have considered hospice, not taken the route we did," he says.

Johnson has such a story. A terminally ill brother decided to spend his last days among family members, but they were unfamiliar with hospice and left him in traditional medical care.

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