Black patients are more likely to say they would select intensive end-of life care if diagnosed with a terminal illness than are whites, according to a study published in the June issue of the Journal of General Internal Medicine. The research team, which included three Dartmouth professors, found a significant correlation between end-of-life care preferences and race, although a majority of all participants said they would reject life-prolonging treatment.
The researchers surveyed more than 2,800 Medicare beneficiaries to determine what type of care they would choose given several hypothetical medical situations, according to Dartmouth Medical School professor Jonathan Skinner, who is also a professor of economics and one of the study's co-authors.
"When respondents were questioned about their treatment preferences if diagnosed with a terminal illness, African Americans were nearly twice as likely as whites to request life-prolonging drug treatment, even if such treatment included uncomfortable side-effects," Skinner said.
The study found that more than twice as many blacks as whites said they would want to receive ventilator support that could extend their lives for a week.
A greater percentage of blacks also reported that they would prefer to die in a hospital, while more whites said they would opt for potentially life-shortening palliative drugs, the study found.
These racial differences persisted after researchers accounted for sociocultural factors correlated with race, including overly optimistic beliefs in the effectiveness of treatment, the study's lead author, University of Pittsburgh health policy and management professor Amber Barnato, said in an interview with The Dartmouth.
Much of the current literature suggests that this disparity is connected to a belief among blacks that the health care system is racially biased, Skinner said.
"There has been a concern that due to the historical legacy of racism and health care, when doctors bring up the idea of not doing as much for someone who is very sick, there's an immediate distrust amongst African Americans," he said. "They interpret it as the health care system trying to deny them care."
Communication barriers may also be responsible for the disparity, according to co-author Denise Anthony, chair of the Dartmouth sociology department and research director for the College's Institute for Security, Technology and Society.
"Since in general most doctors are white, there might be differences in the communication that occurs and the ability to establish trusting relationships with physicians," she said.
The differing responses may also be due to differences in the relationships between patients and doctors, Anthony said.
"If minority patients are less likely to have a usual, regular doctor, which studies have shown is true, it's going to be more difficult to discuss end-of-life issues, which is already a sensitive topic for anyone," she said.
While the study found that Hispanic individuals are more likely than whites to opt for intensive end-of-life care, that discrepancy was not as large as the one witnessed between whites and blacks, Skinner said.
"This is likely due to the fact that there is not a legacy of withholding treatment that reaches the same level of that experienced by African Americans," he said.
Anthony said she hopes the study will encourage shared decision making between patients and their health care providers.
"We need to do a better job of engaging patients in discussions with their caregivers," she said. "We don't do that enough in health care in general, and this should highlight not only the need to do that more with minorities, but also with all patients in general."
Skinner said he hopes the study will encourage physicians to become more attuned to the "different perceptions that African American patients often arrive with." He also warned against making broad assumptions, as end-of-life preferences vary significantly within racial groups.
Barnato said she was concerned that the study might influence doctors to vary end-of-life care depending on the race of their patients.
"That is why I have emphasized throughout the paper that the majority of participants, regardless of race or ethnicity, don't prefer life-prolonging measures when faced with a terminal illness and less than a year to live," she said. "The bottom line is that these decisions are complex, and discussions should be individualized with each patient and family."
The survey was conducted in 2005, and the researchers have continued following the respondents' health care treatments to determine if they actually request the treatment they said they preferred, Anthony said.
"We're looking at how closely the care they are actually getting seems to fit with their stated preferences of care," she said.
The researchers originally aimed to study regional differences, not racial disparities, Skinner said, but the data did not suggest significant variation in end-of-life care preferences across geographic areas.
The research team also included DMS professor Elliott Fisher, director of The Dartmouth Institute for Health Policy and Clinical Practice's Center for Health Policy Research, and Patricia Gallagher, a research fellow at the University of Massachusetts at Boston.
Fisher and Gallagher could not be reached for comment by press time.
