Originally created 12/13/01

Blacks shy away from hospice care



JACKSONVILLE, Fla. - Bernice Felk runs her home from an upholstered, straight-back chair in the living room, much like a queen rules from a throne.

Mrs. Felk taught her husband to cook from that chair.

She sits forward in that chair to interrupt him when he says something that just doesn't sit right with her.

"She still wants to control everything from that chair," said her husband, Samuel.

But he'd rather have her sitting there than lying in a hospital bed as she nears the end of her life.

Bernice Felk, 68, was diagnosed with breast cancer last year.

In June, after a hysterectomy, a stroke and after two lymph nodes were removed, Mrs. Felk's doctor said she had six months to live.

Mr. Felk was uneasy with the idea of putting his wife in a nursing home. So, when the doctor suggested hospice care, he agreed.

"I want to keep her home with me," he said.

Soon a hospital bed, oxygen tank, wheelchair and walker joined the Felks in their home in Jacksonville. A nurse, home health aide and volunteer began to visit a few times a week.

Among blacks, however, the Felks are in the minority. Most black families shy away from using hospice care, for several reasons.

Some blacks are not familiar with hospice, and some view the care as giving up faith in God. Other factors include a mistrust of medical establishments, a desire to take care of their families themselves and a belief that hospice really means no care at all.

Hospice is designed to provide comfort and support to terminally ill patients and their families when cure-oriented treatments can no longer be applied. Hospice focuses on pain management and counseling.

"MANY BLACK FAMILIES are committed to taking care of their own," said Patricia Powell, a registered nurse for Community Hospice of Northeast Florida. "But what many black families don't realize is that we have services to make things easier."

Blacks are 33 percent more likely to die of cancer than whites, and twice as likely to die of cancer than Asian/Pacific Islanders, American Indians and Hispanics, according to the American Cancer Society.

The National Hospice and Palliative Care Organization estimates that of the more than 600,000 Americans who died while receiving hospice care in 2000, 8 percent were black. America's black population is estimated at 12 percent.

"We started noticing the need was greater and the utilization was lower," said Susan Ponder-Stansel, president of Community Hospice. "We committed to not just solving the problem but understanding the problem."

Community Hospice has joined a national movement to research why so few blacks choose hospice care.

The organization found that consumers in general are unaware of what hospice care means and view death as a taboo subject.

"People fear death. Hospice represents death," said Mrs. Felk, as tears gathered in her eyes. "Until a few weeks ago, I learned I'm not fearing hospice, I'm fearing death."

The Felks defied the odds as a black couple who already knew about hospice and as people who feel their faith in God is not shaken by their choice of care.

"If I can just have God's hand when I leave this world, I have made my mission in life," Mrs. Felk said between measured breaths from her chair.

HITTING HOME

The percentage of blacks using hospice care has increased over the years from as low as 4 percent in the 1980s to 8 percent in the 1990s, said Stephen Connor, vice president of development and research for the National Hospice and Palliative Care Organization in Virginia. The figures have remained steady at 8 percent since 1992.