A question of trust
Hospice programs working harder to serve minority communities
Mammie Hall turns 85 today, and her family has planned for her to celebrate at home in Dorchester, in the embrace of children and grandchildren.
Hall suffers from Alzheimer's disease, as well as rheumatoid arthritis. With the help of hospice workers, her family expects she will spend the rest of her life in familiar surroundings, in a hospital bed tucked into a first-floor bedroom of her house.
When it comes to dying, Hall is among the exceptions: African-Americans and terminally ill patients from other minority groups seek hospice services in fewer numbers than whites -- even though they could be closer to family and home, with fewer medical interventions, if they chose to die under hospice care.
Doctors and academics who have studied the phenomenon, locally and nationally, cite a variety of cultural and economic factors for the disparity. These include mistrust of a healthcare system that has left them behind in the past, and a heavier emphasis on serving suburban clients among Massachusetts hospice organizations.
The most recent complete data available show that, in 2005, the percentage of nonwhites who were receiving hospice care in Massachusetts was 10 percent, compared to a general nonwhite population in the state of 17 percent.
Beacon Hospice , a for-profit company in Boston that says it is New England's largest hospice provider, and at least two other hospice programs are trying to reduce the racial disparities, by marketing hospice services in black, Latino, and Asian neighborhoods.
The benefits of dying at home were obvious during a visit to Hall's house on a sunny morning last week.
Hall lay quietly, impassively, her thin frame curled in the bed. She said nothing as hospice caregivers rolled her onto her right side, checked her for sores, and examined a sore tooth.
But then Elijah Hemingway, a 6-year-old grandson, leaned over the stainless-steel bed rail. "Hi Grandma, how you doing?"
She cracked a little smile. "How you doing, my baby?" she murmured.
A nurse from Beacon Hospice visits Hall three or four times a week. A home health aide comes for a few hours every day. Hall's daughter, Elaine Cannady , said the workers provide valuable help.
Beacon Hospice opened an office in an industrial section of Roxbury in 2005 and staffed it primarily with black nurses and home health aides. They care for patients in the home, provide pain medication, and comfort families as they cope with imminent death of a loved one. Beacon Hospice has launched a more aggressive outreach effort since January and has boosted the number of clients in Dorchester and Roxbury by 20 in just two months, bringing its total number of Boston clients to 310, with about 38 percent nonwhite. It even provides hospice services for a client in a homeless shelter. From another office in Charlestown, it focuses on the Asian community and has nurses and aides who speak Vietnamese and Chinese.
Hospice providers also attend to dying patients in nursing homes and hospitals. To qualify for hospice care, patients and their families agree they will no longer seek treatment for their illness, but the patient continues to receive pain treatment. For instance, cancer patients would stop chemotherapy, unless it was intended to relieve pain by shrinking a tumor.
"A lot of the larger hospices seemed in the past 10 years or so to turn their attention toward the white suburbs and outside of Boston," said Dr. Eric Hardt , clinical director of the geriatric section at Boston Medical Center and medical director of Beacon Hospice's office in Roxbury.
"Some had written off Boston as an area they don't generally service, and others have put less focus or emphasis on Boston and the minority community in particular," he said.
Hiring black nurses and home aides at the Roxbury office has been important, because providing cultural sensitivity is mandatory for comforting dying patients and grieving families, he added.
"The African-American community is just as ready and willing to have them die at home as members of any other community," he said.
"But if the hospice staff you offer them is white, and their understanding of death and dying is different, if you have a staff that is afraid of entering the neighborhoods, and they have a different feeling about prescribing opiates in the inner city than in the suburbs, people pick up on this instantly."
"If you are not culturally competent, people feel this," Hardt said. The result: alienation.
Dr. LaVera Marguerite Crawley , a Stanford University assistant professor who studies disparities in end-of-life care in the United States, said physicians often do a poor job of explaining hospice care, because they may assume families already understand the concept and its benefits.
Some minority groups, particularly African-Americans, who have been subjected to poor access to healthcare in the past, may view hospice as a lesser form of medical attention, she said.
"If it doesn't look like a cure or treatment, it sounds like yet another way of denying care," Crawley said.
The Hospice and Palliative Care Federation of Massachusetts , a nonprofit organization representing 51 hospice providers, said at least two other firms have outreach programs in minority communities: Hospice Care Inc. , based in Stoneham, is trying to enroll more minority patients in its Cambridge and Somerville service area. And Hospice of the North Shore , based in Danvers, is conducting focus groups with Spanish and Russian speakers, focusing on patients and families in Lynn.
Overall, the use of hospice services has climbed from 18 percent of deaths in 2001 to 31 percent of deaths in 2005 in Massachusetts. But the hospice industry is still struggling with cultural sensitivities, said the federation's executive director, Rigney Cunningham .
"We have a long way to go with everybody in terms of getting our message out about hospice," Cunningham said, "and we have a long way to go with diversity."
Christopher Rowland can be reached at crowland@globe.com. 