By Jonathan Pitts, The Baltimore Sun
7:01 PM EST, December 18, 2013
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.
When he needed medical attention, loved ones had to call 911. Ambulance drivers would rush him to any of a number of hospitals, "often with tubes sticking out of his arms," Johnson says, making his final weeks on earth chaotic and stressful.
He heard many similar stories, each with a unique twist. There were seniors the health department could not follow frequently enough; some fell out of touch for two or three days only to be discovered deceased. Others chose to stay with family as they fell ill only to find relatives too busy to do such simple things as turning the individual over in bed.
Those who did know about hospice, he says, didn't trust it. Many believed it was a form of secret euthanasia. Others saw using the service as giving up on a loved one. Some said staffers weren't well-trained or diverse enough.
Karen Cousins-Brown, an African-American geriatrician who works as medical director of Joseph Richey Hospice in Baltimore, cites the persistence of what she calls "the Tuskegee Experiment Syndrome." That's her term for a suspicion among many blacks, especially those over 65, that the health care system will give them second-class treatment — or make them the unwitting subjects of medical experiments.
The U.S. Public Health Service did exactly that with scores of black men during the infamous Tuskegee syphilis study between 1932 and 1972.
Shortly afterward, the federal government adopted stringent laws dictating that patients involved in any form of experimentation be fully informed on the goals and methods, but the project's notoriety lingers.
"Many people said, 'I'm not going to let them experiment on me,'" Johnson says. "We want to bring our folks up to date that a lot of [those fears] are not based in actual fact."
The goal of the Morgan State conference, organizers said, was to counter such misinformation.
Posted signs in a ballroom venue listed "myths" (for instance, that it's doctors who decide when patients enter hospice), replacing them with "truths" (it's patients and their families who make that call). Ministers quoted Ecclesiastes ("There's a time to be born and a time to die") and other scripture. And anecdotes abounded.
Cousins-Brown, a keynote speaker, told of her mother, a woman in her 80s who for years refused even to speak about death. But when some of her friends began to pass away, she began to imagine what her own funeral should be like, Cousins-Brown said.
Apparently she disapproved of some of her late friends' interment attire.
"You're not burying me in something like that," she said, according to her daughter.
The tale got laughs but also made a larger point: In a day and age when people are living longer yet dying in less comfortable ways than ever, it takes planning to assure a pleasant end of life.
"If you hear nothing else I say today, I hope you hear this," Mary Weeks, a hospice nurse with the Veterans Administration, said in a stirring speech. "Ask yourself, 'What does quality of life mean for me?' Take steps to be sure it happens."
One health official, Arnold Eppel, the director of the city's Office of Aging and Care Services, says that should mean, at least, that every adult make decisions on "the five wishes" — five questions a prominent advocacy group, Aging With Dignity, has said everyone should be clear on well in advance.
Those include what kind of medical intervention people want and don't want as they enter their senior years and who should make care decisions if they become unable.
Eppel's office will distribute place mats bearing the wishes in senior centers next year. He and his colleagues plan to visit each house of worship that has expressed interest in hospice (more than 60 have left contact information).
Johnson has plans to start taking faith leaders on tours of hospice sites next month.
"We're just getting started with this," he says.
Kane, meanwhile, says hospice care has in many ways saved her life. She especially enjoys one service Gilchrist offers: On a regular basis, staffers pick her mother up and transport her to their Towson inpatient facility for a five-day stay.
It isn't just that Kane gets a much-needed break; her mother loves the visits. Last spring, a staffer even rolled the bedridden Franklin onto the grounds and into a private garden, where she spent the afternoon soaking up sunlight, watching butterflies and even listening as a vocal group sang hymns, all without having to get up.
"Hospice has been wonderful for us," Kane says. "And that day was like heaven on this earth."
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