End-of-life preferences

    A University of Pennsylvania researcher says cancer patients often have to choose between life-prolonging treatments and hospice.

    Doctors aren’t sure why but long-standing research reveals that, compared with whites, African Americans are less likely to use hospice at the end-of-life. Now a new study from the University of Pennsylvania suggests that the eligibility requirements for hospice may be a significant barrier for certain groups.

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    In the study of about 300 cancer patients, researchers found that African Americans had a stronger preference for aggressive treatment.

    Lead researcher David Casarett says most in-home hospice programs take their cues from Medicare which requires patients to accept low-cost care focused on comfort, not cure. He says patients who want treatments — like chemotherapy or surgery — to prolong life have a hard time getting into hospice.

    Casarett: Why should patients have to give up life-saving treatment in order to enroll in hospice? It really doesn’t make sense to me, it even seems unethical.

    In-home hospice often includes a visiting nurse, a home health aide, even counseling for family members. Casarett wants to redesign eligibility requirements to give more people access, regardless of their treatment preferences at the end of life. But Dr. Etienne Phipps says that’s not the best, first step.

    Phipps: I think there is a huge stigma around hospice care particularly from the perspective of undeserved minority populations, that it means giving up on them, that it means getting sub-standard care. And I think that we are not doing enough culturally competent education around hospice.

    Phipps directs the Einstein Center for Urban Health Policy and Research. She says trying to expand the Medicare hospice benefit without first improving communication between doctors, patients and their families is a mistake.

    The new study appears in the Journal Cancer.

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