Unlike terminally ill patients who die in hospitals, attached to tubes and monitors, Marie Madison wants to die in the comfort of her home.
The 97-year-old woman, diagnosed with acute respiratory failure in January, is the first in her family to receive home hospice care, with nurses from New Beacon Hospice in Birmingham checking on her twice a week and on call 24 hours. She also is a black person who chose an end-of-life service that minorities have tended not to use as frequently as whites.
Blacks seek hospice care in disproportionately smaller numbers than whites partly because of cost, health insurance and cultural factors, including a sense of being denied medical care on the basis of race, according to health care specialists.
"Some people think that if a doctor wants them to stay home and not come into the hospital, that the medical system isn't truly concerned about them," said Jon Radulovic, vice president of communications for the National Hospice and Palliative Care Organization.
Many in the hospice industry are reaching out to blacks and the growing Hispanic population, but Madison said no one had ever approached her about it until January.
"A social worker told me about it at the hospital and I thought it was nice," Madison said in a recent phone interview from her home.
Along with help from nurses, the hospice care team includes a chaplain who goes to Madison's home to sing her favorite hymns and read scriptures with her.
"So far so good," she said.
In 2005, 82.2 percent of those receiving hospice care were white, while 7.5 percent identified themselves as black or African-American, according to the National Hospice and Palliative Care Organization. About 75 percent of the country is white, while about 12 percent is black, according to the Census Bureau.
The California HealthCare Foundation issued a report in March that found some minorities and immigrants view hospice care as a way for doctors to deny them the medical care they've been fighting to get.
New Beacon director Debbie Cox said one of her goals is to reassure minorities that hospices provide a service they should consider.
"Once they see that I'm here to help you take care of your loved one, then they warm up to you a little bit," Cox said.
Some hospices are trying to reach more blacks through church programs.
"While I hate to generalize, African-Americans tend to rely a great deal on their spirituality and faith communities when dealing with serious illness," Radulovic said. "Further education to the faith leaders is an important part of outreach to that community."
David Stone, executive director of the Alabama Hospice Organization, said hospices also are trying to get information to Hispanics, including Spanish-language materials and making contact in faith-based community settings and gathering places.
In addition to trying to gain more minority patients, hospices are working to hire more minority employees.
"Hospices are really trying to make sure they as hospice providers are actually more multicultural themselves," Stone said.
He said patients generally want to be cared for by people they can relate to. "When you're dealing with someone at such a vulnerable time, it's understandable that you'd want someone you feel you have a connection with," Stone said.