BRIDGING THE RACIAL DIVIDE IN END-OF-LIFE HOSPICE CARE; Providers Are Working to Gain the Trust of African-Americans

Article excerpt

No one in Telia Stark's family had ever used hospice. They depended on God and one another to deal with death. But mostly, they were afraid.

"I don't want anybody experimenting on me," Stark recalls her uncle saying 10 years ago when his doctor suggested hospice as he reached the late stages of lung cancer.

A fast-growing number of terminally ill Americans are choosing hospice care, which focuses on providing comfort and support at the end of life rather than curative treatments. But a clear racial divide has emerged. The latest figures show only 8.5 percent of hospice patients are black, 82.8 percent are white.

Many blame a history of mistreatment and inequalities in health care for African-Americans as the biggest factor. Studies show that mistrust in the health-care system is pervasive among blacks, and they are much more likely than whites to choose aggressive care in life's final stage.

Starks, 44, of Florissant, was familiar with hospice through her education as a social worker. She explained to her uncle that he would no longer have to go to the emergency room when he had pain. She told her grandmother, his caretaker, that counselors would help her work through her grief.

Because they trusted Starks, they agreed. Starks saw first-hand the peace and comfort they received, and the experience inspired her to work in hospice care and forever changed their family.

"Hospice in my family was taboo, and now I am a hospice social worker and educator; and I've had five other family members utilize hospice," Stark said. "That is huge."

Building trust and improving education are keys to improving access for African-Americans, say area hospice providers. Many are finding success by reaching out to clergy members, primary care physicians and administrators at long-term care facilities that serve the black community. They have been meeting with local African- American groups such as the St. Louis Metropolitan Clergy Coalition and Mound City Medical Forum.

"We trust our family members and our next of kin and our religious leaders," said Stark, who works for Passages Hospice. "If we can combine that along with educating the African-American community, then it can open doors and ways into our community."

A study released last summer in the American Journal of Hospice and Palliative Medicine shows that when African-Americans are informed about hospice and counseled about their illness and treatment options, they more likely to choose the service, upending the belief that the choice is more about cultural preferences.

Officials at VITAS, a leading end-of-life care provider in the St. Louis area, said the company increased the percentage of black patients it serves from 17 percent to 34 percent in just the past four years because of its Access Initiative program, which includes outreach visits to churches, doctors' offices and senior housing. African-Americans make up about 48 percent of the population in the city of St. Louis.

"Typically, hospice has a negative connotation. They think it's a place to go and die, when all your medications stop or we stop feeding you or giving you water. They don't really know what it is," said Lorraine Hall, who leads the company's local outreach efforts. "We ease their comfort level about how they are treated through hospice care."

Jennifer Johnson, 57, of north St. Louis County, thought it meant she had days to live when her doctor suggested hospice after the progression of her pancreatic cancer. …