Many studies have shown that black Americans receive poorer health care than whites—and that appears to be true even during end-of-life care, suggests a new study published Tuesday in the Journal of the American Geriatrics Society. The study found that black people enrolled in home hospice care, which is designed to help terminally ill patients die with dignity and minimal pain, are more likely to visit the emergency room, become hospitalized, and drop out from hospice care altogether than white people. These disparities held true even when looking at cases within the same hospice or accounting for the different kinds of terminal illnesses patients had.
“While differences exist between hospice organizations in how frequently their patients are hospitalized, including time in the emergency room, and disenrollment from hospice, these patterns do not explain racial disparities between blacks and whites in hospital use and hospice disenrollment,” said study author Melissa Aldridge, an assistant professor of geriatrics and palliative medicine at Mount Sinai’s Icahn School of Medicine, in a statement.
While palliative medicine is what we call any kind of treatment plan that tries to make life easier for someone dealing with chronic illness without curing it, hospice care is intended specifically for people who are estimated to have less than six months to live.
Aldridge and her co-author looked at nearly 150,000 people on Medicare who had signed up at one of over 500 hospices scattered across the U.S., using data from a earlier national survey of hospices. In the study, 8 percent of hospice patients were black and 90 percent were white. Nearly 15 percent of black patients ended up hospitalized, compared to about 9 percent of white patients; and 18 percent of black patients left hospice care before their death, compared to 13 percent of white patients.
The study is only the latest to show a persistent racial speed bump in medicine: Black people have been found to get overall worse cancer care, ER pain treatment, and are even less likely to get a kidney transplant (though there’s been some recent success in closing that gap). Black women are more likely to die during childbirth. Given that home hospice care is supposed to provide people with as much comfort as possible before they die, though, these differences are all the more disheartening. Any added stress can not only make the end of life worse for hospice patients, but it can also trickle down to the family and caregivers they leave behind.
Because of the study’s nature, the authors can’t offer any concrete reasons behind the hospice gap from their results alone. Their best guesses include black families not having the resources needed to sustain care, caregivers of black patients feeling more burned-out and turning to hospitals in desperation, and doctors not doing a better job of conveying how to make the most of hospice care to families. Other research has long shown that black people and other minorities are more likely to avoid hospice and pursue aggressive treatment of a terminal illness, which might also explain some of the disparity if, for instance, patients change their mind halfway through. Left unanswered is whether these disparities are also apparent among other racial and ethnic minorities, since there were so few seen in the data the authors used.
“Our findings underscore the need to better understand racial disparities in outcomes after hospice enrollment,” said Aldridge. “Culturally sensitive interventions that increase understanding of hospice, address shortcomings in provider communication, and improve caregiver resources could help decrease these persistent differences in outcomes.”