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Programs Aim to Persuade Black Community to Use Hospice Care for Terminally Ill

Posted on: Wednesday, 29 March 2006, 21:00 CST

By Diane C. Lade, South Florida Sun-Sentinel

Mar. 29--Like other blacks, Freddie Grice was reluctant to consider hospice care for his 90-year-old mother when she was hospitalized two years ago and told by her doctors that she had less than a week to live.

"We weren't familiar with hospice," said Grice, who runs a sports and entertainment company in Delray Beach. "As advanced as the medical profession is ... I felt that it was the higher power, which is God, that would decide when it was time for my mother to cross over."

In the end, Grice changed his mind about hospice. Today he believes his mother's final days were well spent. She died in her own bed surrounded by family and friends.

South Florida hospice workers, however, say misconceptions about hospice are keeping many black families from turning to this gentle style of end-of-life care, where pain-easing medications take the place of aggressive treatments.

Federal statistics show that blacks are less likely to use hospice than whites and most other minorities, often because of tenets of faith and mistrust of the health-care system. But several South Florida hospice operations are attempting to counter such perceptions.

One is Opening Doors, started by Hospice by the Sea in Boca Raton to encourage more blacks to embrace the option. Only 3 percent of the agency's patients are black.

Janice Fulmore-Tigner, the program's outreach director, was born and raised in the Deerfield Beach black neighborhood where Opening Doors has its office. She has heard friends and neighbors sometimes insist that prayers for a miracle, not hospice, were what the dying needed.

"They think hospice will just take their relative out of the house and let them die," Fulmore-Tigner said.

Opening Doors may be the first South Florida hospice effort aimed at blacks, although there have been several aimed at Hispanics in recent years. Soon there may be more. Gold Coast Home Health and Hospice, part of the North Broward Hospital District, is planning a training program for minority caregivers. Gold Coast, which draws from the district's tax-assisted hospitals, has a high percentage of minority patients: 27 percent are black, and 7 percent Hispanic.

Administrator Lynda Friedman said patients often are brought by their families to hospital-based hospice wards to die. "We think if they were taught how to care for someone at the end of life ... they would be more likely to keep them at home," she said.

Blacks have among the lowest hospice utilization rates of any minority group, federal Medicare statistics show. White Anglos remain the ones likely to use hospice, but participation is increasing among all races, according to federal Medicare statistics. In 2002, about 26 percent of terminally ill white patients used hospice, compared with 20 percent of Hispanics and 18 percent of blacks. Only Asian-Americans had a lower rate than blacks, at about 14 percent.

Specialists in hospice care say South Florida trends mirror those across the nation. To help blacks become more at ease about hospice, they say, hospice organizations need to go to the places where blacks feel comfortable and safe. Their churches. Their barbershops and beauty parlors.

Janet Neigh, vice president with the Hospice Association of America, said it's also important that hospices have black nurses and coordinators on board.

Fulmore-Tigner was one of the reasons Freddie Grice changed his mind about hospice.

She told him hospice care would allow his mother to spend her last days in her own bedroom, in the neighborhood where she had raised her children and attended church. Hospice workers encouraged the family to feed her applesauce and other favorite foods she still could eat -- treats that Grice had been sneaking into the hospital.

Clydia Grice lived another year and half, not the week her doctors predicted. And when the end came, she was surrounded by her friends and family, praying and singing her favorite hymns.

"She would open her eyes and look at us. The nurses were singing, too," Grice remembered. "This is the way we wanted to send her off. With joy, peace of mind and happiness."

The hospice model of end-of-life care usually is for patients with a year or less to live. It encourages patients to accept a gentle dying process, preferably at home, with nursing support.

Hispanics and blacks are more likely to have religious backgrounds that put life and death in the hands of God, said Dr. Lyla Correoso, who has examined end-of-life care for blacks. Also, black families are more likely to see terminal illness as something to struggle against and overcome, not accept.

"There is still a mistrust in the health-care system that goes back to slavery times," said Correoso, medical director for the Visiting Nurse Service of New York Hospice in the Bronx.

As a group, blacks also may not be as aware as white patients of some medical treatments, including hospice.

Hospice by the Sea knows building trust will be crucial to Opening Door's success. That's why Fulmore-Tigner, a local, was chosen to run it. She already has forged alliances with black ministers and activists, meeting with them to tell them how it can help families struggling with terminal illness.

"She's a one-woman crusader. The minute she hears the doctor has given someone up, she goes to the family," said Deerfield Beach City Commissioner Sylvia Poitier, who has been promoting the program to other blacks. "Someone else might not be able to get in the door, but people trust her."

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Source: South Florida Sun-Sentinel

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