Racial Disparities in End-of-Life Care—
How Mistrust Keeps Many African Americans Away from Hospice
Sharitta Berry was at Oakland’s Highland Hospital when she got the bad news in early 2018. For several months, Berry was coughing heavily and struggling to breathe. Her doctors told her she has COPD, chronic obstructive pulmonary disease caused by years of heavy smoking and drug abuse. There is no cure for COPD and her condition is rapidly getting worse. The bad news hit her hard—she felt sad, scared, and depressed. The 52-year-old Berry needed to make an important decision. She could choose the comfort care provided by hospice. Or she could undergo invasive surgery and be attached to a ventilator for the rest of her life.
Berry’s doctors tried to explain her options, but they were unable to communicate effectively with her and she couldn’t reach a decision. At the heart of the communication breakdown was a deep lack of trust of the medical system—Berry, an African-American woman, did not trust what her doctors were telling her. “Gorillas, some of the doctors were all gorillas, said Berry’s daughter Ashley Hunter, describing the recurring dreams her mother had about doctors, “Or they were like robotic. She was talking about doctors doing something to her.”
Reasons for Racial Disparities at the End
Communication skills and training in conducting sensitive, end-of-life conversations are essential for providing high-quality care to dying patients. However, studies have found that African Americans report lower quality interactions with their physicians, compared with white patients. In one study surveying 1816 participants by telephone in the late 1990s, African-American patients rated their visits with physicians as less participatory than whites. African Americans also report less satisfaction with the quality of communication, including the extent to which providers listen and share information. U.C. San Francisco palliative care researcher Dr. Alexander Smith conducted a multistate study of 803 terminally ill patients published in 2007. According to Smith, “We found that African-American patients reported significantly lower quality patient-physician relationships than white patients.” Many African Americans are either unaware of hospice care or lack a clear understanding of what hospice is.
Home Hospice Can Provide a More Affordable, Less Painful Option to Hospitalization
The goal of home hospice is comfort and pain management, when cure is no longer possible. Curative, life-prolonging treatments such as surgeries and chemotherapy are stopped, and the focus shifts to quality of life. Hospice care focuses on the patient’s physical, emotional, social, and spiritual needs. The patient spends his final days and weeks at home, taken care of by family members with the help of hospice nurses and volunteers to monitor his medications and comfort level. But far fewer African Americans utilize hospice compared to whites. Among Medicare beneficiaries who died in 2010, 45.8% of whites used hospice compared to 34% of African Americans.
Reaching Out to Dying African-American Patients
Berry’s doctors finally brought in Dr. Jessica Zitter, a palliative care specialist, to help out. Rather than dominate the conversation with medical jargon, Zitter let Berry talk for a long time. Berry felt comfortable speaking with Zitter and soon, it became clear what Berry wanted.
“I said ‘well, what do you think about being on a breathing machine?’ ” recounts Zitter. “And [Berry] said ‘I’m afraid I wouldn’t get off.’ I said ‘I’m afraid you wouldn’t get off too.’ And she said ‘I don’t want it.’ And that was it—that was the answer.”
Berry is now at home, receiving hospice care. Her daughter Ashley is her part-time caregiver, and is relieved that Berry did not choose aggressive life sustaining treatments. “My mama knows I don’t like seeing her in the hospital,” said Hunter, “She knows I’m more comfortable her being with me and closer to me.”