A provocative study on provision of treatment to sustain life finds a divergence of opinion often falling along racial lines. The finding that the wishes of black patients were not only different from those of their white counterparts, but are largely at odds with the prevailing ethic regarding end-of-life care, highlights the necessity to recognize variant beliefs.
“It is probably not just a black-versus-white issue. We need to recognize that there is a wide range of attitudes toward end-of-life care that don’t necessarily mesh with the attitudes of the medical establishment,” said William Bayer, a family physician practicing in Rochester, N.Y and lead author.
“My sense is that any extensive medical care for a terminal illness is considered to be futile or a waste of valued medical resources,” he said. In contrast to that attitude, Bayer’s investigation found that many black patients said they would want life-extending therapy even if they suffered from an incurable condition.
The study analyzes responses from 50 blacks and 27 whites, all patients of two different medical practices in upstate New York.
The findings appear in the latest issue of the journal Ethnicity and Disease.
The study questionnaire outlined various end-of-life scenarios, like brain death or dementia, then asked participants if they would want life-sustaining treatment in each hypothetical situation.
Each participant was given a glossary of end-of-life terms which explained different medical conditions as well as various types of life-sustaining treatment, including a ventilator to maintain breathing, a feeding tube for nutrition and hydration and cardiopulmonary resuscitation (CPR).
The black study participants were more likely to want life-sustaining treatment versus the white patients, the study found. All of the black study participants were patients at Bayer’s private practice in inner-city Rochester. All the white participants were patients of a medical practice in suburban Rochester.
Bayer said this study doesn’t tease out whether the preference for life-sustaining care is a result of that geographic divide, race or some other factors. But whatever is behind the difference, he said “the divergence in attitudes toward end-of-life care needs to be appreciated and worked into future planning for individuals in life-and-death situations.”
In 25 years of medical practice, Bayer said his patients have shared their suspicions about the motives of health professionals with whom they have little history or relationship.
“It’s not all bad, but I think at the end of life patients are often not cared for by their primary care physician,” Bayer said. “In general, end-of-life care, it’s a decision made by the hospitalists — the resident in consultation with the attending physician. They make the decision and then they present it to the family in many circumstances,” he said.
Bayer said race is also a factor. “For good reasons, African-Americans have a profound distrust of decisions made by wealthy, white people. We have well-documented history of bias toward African-Americans, so they wouldn’t necessarily trust decisions to withhold treatment.”
End-of-life researcher Etienne Phipps said Bayer’s study reflects previous literature findings. “We have found that African-American patients and caregivers, when considering terminal disease and life-sustaining choices do prefer those treatments compared to whites.” But she said the reasons for this are not clear.
Phipps is director of Philadelphia’s Einstein Center for Urban Health Policy and Research and head of the ethics consultation service for the Albert Einstein Healthcare Network.
“Throughout the article, the authors frame an attitude toward wanting life-sustaining treatment as a positive value among African-Americans, and I’m not sure that’s correct,” Phipps said.
Some life-sustaining treatment — like ventilators and feeding tubes — can come with complications and additional medical problems, she said, and sometimes that information is not conveyed to patients, caregivers and family members.
Having that knowledge might change views of life-sustaining treatment, Phipps said.
Phipps said that made-up scenarios presented to relatively healthy patients may not be the best gauge of true wishes at the end of life. “When you use hypothetical scenarios with patients who are not in existing situations, you don’t really know if the hypothetical translates to the actual,” she said.
Bayer W, et al. Attitudes toward life-sustaining interventions among ambulatory black and white patients. Ethn Dis 16(4):914-919, 2006.
Source: Health Behavior News