Minority patients less interested in hospice care
■ They also are likelier to leave hospice after enrolling. Medicare pay rules are contributing to racial disparities in end-of-life care, experts say.
Racial and ethnic minorities are less likely than white patients to choose palliative care in the last six months of life, says a study of Medicare beneficiaries published in The American Heart Journal.
After adjusting for the characteristics of about 220,000 Medicare heart-failure patients studied, the nonwhite patients were 20% less likely to enter hospice care. The disparities in end-of-life care did not end there. Among patients who opted for hospice, minorities were likelier to visit the emergency department and stay in the intensive care unit. Nonwhites also were about 40% likelier to disenroll — or leave — hospice, the study said.
“A common reason why patients disenroll is that they want more aggressive treatment,” said Kathleen T. Unroe, MD, MHA. “What I think explains some of this is that the hospice program was not compatible with what they wanted as they progressed, so they chose to disenroll.”
A wide body of previous research has documented that black, Hispanic and other minority patients prefer more aggressive end-of-life care than whites. That disparity appears to hold true even after patients choose hospice care. Under Medicare hospice benefit rules, patients who opt for hospice must forgo curative treatments in favor of palliative care.
“We know these disparities exist, and researchers have shown that different racial and ethnic groups tend to have different preferences,” said Dr. Unroe, assistant research professor in the Division of General Internal Medicine and Geriatrics at the Indiana University School of Medicine in Indianapolis. “Now you’ve chosen hospice, you’ve stated a preference, you’ve made a decision — yet still there are these differences. That’s why we’re exploring is this the best benefit for everyone? Is the way that it’s structured meeting people’s needs?”
The Affordable Care Act established coverage for “concurrent care” — a combination of curative efforts and hospice care — for children with terminal illnesses covered by Medicaid. The law also calls on the Dept. of Health and Human Services secretary to conduct a three-year demonstration project to test concurrent care at 15 hospice-care sites, but no such project has been announced.
David Casarett, MD, is involved with a University of Pennsylvania project that will test a related idea. In June, the Centers for Medicare & Medicaid Services awarded the university a $4.4 million grant to offer palliative care services to Philadelphia-area cancer patients who are receiving home care but not yet sick enough to be deemed eligible for hospice care.
Medicare rules worsen disparities?
Dr. Casarett and his colleagues surveyed 283 cancer patients receiving oncology care at the University of Pennsylvania for a Feb. 1, 2009, study in the journal Cancer. The study found that black patients had stronger preferences for continuing their treatments compared with white patients and had greater physical, psychological and symptom needs for palliative care.
Treating palliative and curative care as mutually exclusive exacerbates racial and ethnic gaps in end-of-life care, said Dr. Casarett, chief medical officer of the University of Pennsylvania Health System’s hospice program and associate professor of medicine at the Perelman School of Medicine at the University of Pennsylvania.
“The key lesson is that the Medicare hospice benefit that asks patients to give up aggressive, life-sustaining treatment really doesn’t make sense and is arguably unfair,” he said. “We know African-Americans tend to have more aggressive treatment preferences, enroll later and are more likely to withdraw from hospice. That’s clear evidence, to me at least, that the benefit is not designed well and prevents large groups of people from getting the care that they want.”
In lieu of policy changes to pay more broadly for concurrent care, doctors should be cognizant of how patient demographics may influence receptivity to hospice care, experts said.
“Physicians should have earlier discussions with patients about their preferences for care, their goals of care and explore any concerns or barriers they might have to palliative and end-of-life care,” Dr. Unroe said. “Even if you do that, there are some people — white or nonwhite — for whom hospice is never an acceptable option the way it’s currently structured.”