Lavera Crawley first witnessed end-of-life care as a medical student in Tennessee more than 20 years ago. An elderly African-American woman’s heart stopped. Health care workers, including Crawley, rushed into the woman’s hospital room and began CPR. The patient survived the physical trauma of chest compressions only to have her heart stop again—this time for good. “It was the sort of death everyone fears,” Crawley remembers.
It struck Crawley that no one had talked with the woman about the kind of death she wanted. Medically, Crawley says, “that was what was done.”
Since 1997, Crawley has worked to ensure that end-of-life care for African-Americans is available and appropriate. A physician-lecturer at the Medical Center, she recently was named executive director of the Initiative to Improve Palliative Care for African-Americans, a collaboration by Memorial Sloan-Kettering Cancer Center, Harlem Palliative Care Network and Stanford’s Center for Biomedical Ethics. In January, she organized a national conference on palliative care in New York that attracted 1,200 health care providers, philanthropists and African-American leaders.
Many African-American patients and their advocates focus on obtaining access to high-technology treatments, Crawley has found. Part of her project is to redefine quality care for African-Americans to encompass both curative care and, when appropriate, palliative and hospice care.
Crawley’s larger effort, however, is to study how African-Americans respond to current practices in end-of-life care. She has found that although socioeconomic status is a significant factor in people’s views of death and dying, race, too, plays a role. African-Americans, for example, have a tradition of resisting death, Crawley says. This sense of struggle—apparently rooted in the legacy of slavery and in strong ties to Christianity—leads some to decline hospice care.
Although Crawley and her family accepted hospice care for her dying mother in 1989, Crawley says they viewed life and death differently from some of her mother’s non-African-American caregivers. One nurse suggested her mother did not have quality of life anymore. But Crawley had a different view. “I saw her legacy,” she says. “I saw the vibrant person she was.”
