Mistrust of medical system helps explain why many shun these services, survey finds
TUESDAY, Feb. 5 (HealthDay News) -- End-of-life hospice care is used much less often by American blacks than whites, and certain cultural beliefs may explain why, a new survey finds.
An historical mistrust of the health-care system and a strong preference for curative treatment compared to palliative care encourage many black Americans to avoid or delay hospice services, the researchers found.
"Blacks in our sample compared to whites clearly had less favorable beliefs and attitudes about hospice care," said study lead author Dr. Kimberly Johnson, a geriatrician and palliative care specialist at Duke University Medical Center.
She presented the findings over the weekend at the annual meeting of the American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Nurses Association, in Orlando, Fla.
Over the past few decades, a growing number of terminally ill Americans have opted for hospice services, which focus on easing physical and emotional suffering in life's final stage rather than curative treatment.
And yet a clear racial gap has emerged in terms of who is using hospice care. According to Johnson, data collected in 2006 found that just 8 percent of hospice enrollees in the United States were black, even though they make up 12 percent of the population. That's compared to whites, who comprise 81 percent of hospice patients, even though they make up 74 percent of the population.
"If you consider that blacks have higher rates of death from cancer and heart disease, which are still the top causes of hospice admissions, then it seems that there is a significant gap there," said Johnson, who is also an assistant professor of medicine at Duke.
To find out why this might be so, her team surveyed 205 white and black adults aged 65 and older (average age 74) on their knowledge and opinion of hospice care.
First of all, older whites were much better informed about hospice compared to their black peers, the study found. While 4 percent of whites said they had never heard of hospice, more than 21 percent of blacks said they were unfamiliar with the concept.
Certain spiritual beliefs also seemed to work against hospice as an end-of-life choice for blacks. "African-Americans were more likely to believe that pain and suffering is sometimes 'part of God's plan' for your life," Johnson said. "Something like that would be inconsistent with the hospice philosophy."
Blacks were also much more likely than whites to press for continued treatment of the underlying disease -- even when the chance that it would help was slim. These individuals may view hospice as "giving up" and therefore resist enrolling in such care, Johnson said.
The biggest factor at play seemed to be a widely held mistrust of the health-care system, coupled with the sense that the system is generally less accessible to black patients. Issues of "trust seemed to explain the racial disparity more than any other factor," Johnson said.
None of this surprises another expert in the field, Ronald Barrett, a psychology professor at Loyola Marymount University in Los Angeles.
"The [historical] stigma and the mistrust of the health-care system is still there," Barrett said. "So, hospice institutions have opened their doors and they are wondering why blacks aren't coming? It's because they have this long history of feeling unwelcome, disenfranchised and marginalized."
Income and insurance concerns also play a role, Johnson said. More than one-third (34 percent) of blacks in the survey thought they could not afford hospice care even if they wanted it, compared to 20 percent of whites. The truth is that the service is typically covered by Medicare, Johnson pointed out.
"Still, among my own patients I'm often asked that -- well, how much will it cost us?" she said.
Barrett's research also suggests that black Americans often consult at length with family and friends on end-of-life decisions, while white patients typically view these choices as something best left to the individual.
Still, racial disparities in hospice care have narrowed somewhat over the past decade, both experts said. "People are more open to the idea, so we are making some progress in that regard," Barrett noted.
For her part, Johnson said notions of hospice may need to become more inclusive to draw in a wider range of patients. That could mean becoming more open to a broader range of attitudes on sickness and dying -- whatever the patent's race or ethnicity.
For example, allowing some amount of curative treatment into the hospice model might help, Johnson said.
"To allow people to receive good palliation while they are still receiving some cure-directed therapies -- that might make for a smoother transition that might be more attractive to African-Americans," she said.
There's much more on hospice care at the Hospice Foundation of America.
SOURCES: Kimberly Johnson, M.D, assistant professor of medicine and geriatrician/palliative care specialist, Duke University Medical Center, Durham, N.C.; Ron Barrett, Ph.D, professor, psychology, Loyola Marymount University, Los Angeles; Feb. 1, 2008, presentation, annual meeting, American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Nurses Association, Orlando, Fla.
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