printable versionVantage point: End-of-life care choices influenced by culture, communication
BY LAVERA CRAWLEY
LaVera Crawley
In 1999, I encouraged an audience of black physicians to join the growing national dialogue on improving end-of-life care. That decade had seen an unprecedented amount of attention and funding by private foundations and the National Institutes of Health to "transform the culture and experience of dying and bereavement" in the United States.
I presented the story of an elderly, medically illiterate woman with advanced cancer whose end-of-life experience was compromised by a medical team that did not understand her socio-cultural background. She was one of several patients I had followed during a two-year study of end-of-life decision-making among African-Americans. Because of a poor prognosis, aggressive treatment for her cancer was not recommended and she was referred to hospice. But discussions of hospice were complicated by her firm denial of her diagnosis of cancer in the first place and of the prognosis itself, which she called "a death sentence."
Most likely, her denial was less due to a sense of grief in accepting her fate than to poor communication between the patient (who spoke a black vernacular of English and had reduced health literacy) and the doctors (who spoke with medical and technical jargon). She died soon thereafter, having never accepted that she had cancer or that she was about to die.
I told this patient's story to inspire my African-American physician colleagues to help not only to transform the culture of dying in the United States, but to make sure that the unique needs of blacks, Latinos, Native Americans and other minority groups were taken into account. Dick Gregory, comedian and civil-rights activist, stood up after my presentation and asked if the medical community was trying to get African-Americans comfortable with dying. Gregory's point was that the audience—and the speaker—should consider how the acceptance of a comfortable death might be a misplaced priority, given the patterns of dying among ethnic groups
In our recently completed California Healthcare Foundation study of racial, cultural and ethnic factors affecting quality end-of-life care in California, we suggest that while hospice is the gold standard of care for certain kinds of dying patterns, such as deaths from cancer, we need to reconsider the full implications of this standard given patterns of dying among the state's ethnic populations.
In 2004, sudden deaths made up only 8 to 9 percent of total California deaths. However, that number rose to 45 percent among persons counted as Mexican immigrants who died suddenly from trauma. Despite efforts to prevent deaths from trauma, they will continue to be inevitable, requiring improved end-of-life care in emergency departments and other acute care settings.
For patients dying from conditions in which hospice care is the more appropriate model, funding barriers may conflict with some ethnic minority preferences for care. For example, the Medicare hospice benefit requires that a patient have a limited prognosis and agree to waive part-A Medicare benefits, which may include curative interventions, such as chemotherapy. These restrictions run counter to the preferences of some African-American and Latino populations for life-prolonging therapies. Such restrictions may make decisions for hospice seem as if patients must choose between life and death. Alternative funding strategies are clearly needed that allow patients to receive both models of care.
California, with its widely diverse population and its corps of physicians and policy-makers, has an opportunity to set a national example for quality end-of-life care for all its residents. But first, we as physicians must work harder to truly understand the needs and desires of each patient facing end-of-life care.
LaVera Crawley, MD, MPH, is an assistant professor (research) of pediatrics and a member of the Stanford Center for Biomedical Ethics and the Stanford Cancer Center. She is the lead author of the California Healthcare Foundation report on end-of-life care.