The Cultural Challenges of Death

In America, where individualism is celebrated, doctors tend to treat death and illness as a personal matter. But in Asian and Latino communities the family often determines what treatment should be administered to their loved one, and even on how he should be allowed to die.

By Viji Sundaram, New America Media

“Dying,” observed Dr. Mark Smith, president and executive director of the independent philanthropy, California HealthCare Foundation (CHCF), “is so culturally determined, perhaps more than any other thing.”

“That’s one of the reasons why it so difficult for health care providers in the U.S. to offer end-of-life care” to patients from ethnic communities, said Dr. LaVera Crawley, a Stanford University medical ethicist who was commissioned by the CHCF to research racial disparities that affect end-of-life care in California. “We are not trained in cross-cultural ways.”

Smith released some of the key findings of that study May 22, at a media briefing for the ethnic press organized by New America Media. Eighteen reporters attended, where they also heard two other leading California health care providers, Dr. Sandra Hernandez and Dr. Alice Chen, on the subject.

Aside from the role Asian families and friends play in the life of a family member facing a major illness or death, other findings of the CHCF report included the importance of having a health care workforce that can provide linguistically and culturally-sensitive services to racial minorities who are facing death.

The report also pointed out that not all ethnic communities, perhaps for cultural reasons, “value planning ahead” for the end of life care services they would like to receive, said Smith.

Chen, who worked for several years at the Oakland-based Asian Health Services before she moved to San Francisco General, concurred with Crawley’s findings. She asserted that doctors should try to win the “trust and respect” of their patients and their families before they can broach the sensitive issue of dying.

“You have to understand the sense of family is so strong among them,” Chen said, noting that “a lot of Asian families ask you not to share the prognosis with the patient,” fearing he may not be able to handle it well. That makes it difficult for Western health care providers, she said, because we “are trained for full disclosure.”

She also emphasized that the end-of-life care provided to ethnic communities, who are fast becoming the new face of California and many other states, should address their spiritual needs.

“We need continuing medical education,” Chen said. “We have very little training in end-of-life care.”

Noting that “death and dying is a contemporary issue to all of us,” Hernandez, who once served as director of public health for the City and County of San Francisco, and who said she witnessed a great deal of death and dying during the AIDS epidemic in California, said it’s important to explore the “culture of dying.” As Smith noted, most doctors are trained to be “good engineers, not poets.”

Citing from her own experience when her 87-year-old father died of a heart attack in the comfort of his home. Despite having made it clear that he did not want “to die connected to tubes,” Hernandez said, he was subjected to resuscitation in a hospital. Such traumatic miscommunication suggests something is wrong with the delivery of health care in the U.S.

Physicians, she said, are trained in administering medications to patients and hooking them up to tubes to get some form of life back even “when a perfect death” occurs.

She said palliative care and hospice care have their origins in European culture and are foreign to many other cultures, particularly Asian and Latino.

“So part of what we need to think about is what language should we use” when dealing with those other cultures. “Unless we do this, hospice care will continue to be underutilized.”

Echoing her sentiments, Smith pointed out that most doctors are trained to be “good engineers, not poets,” more skilled as diagnosticians than cultural mediators.

In his presentation, Smith said that of those who died in hospice care, only 4 percent were Asian American, six percent were African American and 15 percent were Latino. The overwhelming majority, 74 percent, were white.

NAM’s executive director Sandy Close urged the media at the briefing to let their audiences realize the importance of talking about death and dying. Hernandez suggested for instance, in her case her father made his living will when some of his close friends were dying.

Smith said that those with chronic illnesses – and a large number of Californians have more than one chronic condition – should discuss end-of-life care with their health care providers.

He pointed out that financial incentives offered by Medicare encourage health care providers to engage in intensive treatment to all patients. More than 20 percent of Medicare spending goes to end-of-life care, he said.

In a separate interview with NAM, Crawley said that health care providers who have “cultural humility” are more likely to persuade ethnic communities to access end-of-life care services.

Viji Sundaram is the Health Editor at New America Media. The briefing on end-of-life care was supported by a grant from the California Health Care Foundation.