Sharitta Berry was at Oakland’s Highland Hospital when she got the bad news in early 2018. Doctors told the 52-year-old that she had Chronic Obstructive Pulmonary Disease (COPD), caused by years of heavy smoking and drug abuse. There is no cure for COPD and her condition was rapidly getting worse.
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 break-down was a deep lack of trust of the medical system—Berry, an African-American woman — did not trust what her doctors were telling her.
Berry’s daughter, Ashley Hunter, said her mother was having recurring dreams about doctors. “Some of the doctors were all gorillas,” said Berry. “Or they were like robotic. She was talking about doctors doing something to her.”
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. African Americans also report less satisfaction with the quality of communication, including the extent to which providers listen and share information. Many are either unaware of hospice care or lack a clear understanding of what hospice is.
The goal of home hospice is comfort and pain management, when a cure is no longer possible. But far fewer African Americans utilize hospice compared to whites. Among Medicare beneficiaries who died in 2010, 45.8 percent of whites used hospice compared to 34 percent of African Americans.
“African-Americans do tend to die more often on machinery in facilities, away from home in pain than white patients,” said Oakland palliative care specialist Dr. Jessica Zitter, referring to a 2013 survey done by the Pew Center survey.
Even though there’s little chance of full recovery, African-Americans are more likely than whites to choose life-sustaining measures. Minorities at the end of life are more likely to receive high-intensity, life-sustaining treatments. Without the comfort care provided by hospice, African-Americans at the end of life have less access to pain medication, especially if they live in low-income neighborhoods, which Zitter says can sometimes be “pharmacy deserts.”
For dying patients who opt for aggressive, life-prolonging treatments, Zitter says these heroic measures can immobilize frail patients, thus increasing their discomfort and suffering in their final days of life.
“If I sit and think what that must feel like to be a dying person, unable to communicate on my back in an ICU or a ventilator facility with tubes surgically attached to my body with my arms tied down—to me, that’s a fate I would never personally want,” said Zitter.
Berry’s doctors finally brought in Zitter to help her reach a decision on the care she wanted during the last months of her life. Rather than dominate the conversation with medical jargon, Zitter gained Berry’s trust by letting her 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 returned home and received hospice care, pain medications, breathalyzers, and an oxygen tank. “My mama knows I don’t like seeing her in the hospital,” said r Hunter, “She knows I’m more comfortable her being with me and closer to me.”
Five months after the terminal diagnosis, Berry passed away peacefully in her sleep, surrounded by her family.
This story is part of a series examining racial disparities in accessing hospice and comfort care at the end of life. JoAnn Mar’s report was produced as a project for the USC Annenberg Center for Health Journalism’s 2018 California Fellowship.