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
"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
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. …