It’s your first time in a U.S. hospital // You don’t speak the language // You can’t read the signs // How can you tell doctors the red welts on your back are the result of a healing ritual, not a sign of abuse?
Care Across Cultures
If you had asked Lia Lee’s parents what caused their daughter’s epilepsy, they might have told you, through an interpreter, about her soul wandering from her body. They might have said, too, that the medications her Western doctors prescribed were frequently changed, difficult to administer and caused side effects—and so they failed to follow the prescriptions. They might even have suggested things could have turned out differently had Lia been born in the Lees’ native Laos. But her birth was at a hospital in Merced, Calif., and at three months of age, the girl suffered her first epileptic seizure. Others followed quickly, becoming increasingly severe, and despite compassionate, often heroic care from physicians and nurses during 17 hospitalizations, Lia sustained irreparable brain damage.
In the Hmong language, epilepsy is known as qaug dab peg, literally “the spirit catches you and you fall down” —the title of the highly regarded book by Anne Fadiman, which recounts Lia’s failed journey through the American health system in the early 1980s, a passage beset by language barriers and a clash of cultures. Lia’s doctors put their faith in a regimen of antiepilepsy drugs, while her family, blaming malevolent spirits, wanted to appease them with animal sacrifices and other traditional healing techniques. Lia, caught in the middle, did not get well.
Fadiman’s account mirrors the experiences of legions of immigrants and their American health care providers. Those new to this country, particularly when they come from non-Western cultures, face many hurdles in receiving care, and similar problems plague native-born minority populations. Moreover, to varying degrees, these issues affect all Americans as they set out to navigate the medical culture. In the case of immigrants, not speaking the language is often only the beginning; they may also wait longer before going to the doctor—in some cases, until treatable conditions have become dangerous—or have different expectations about their care. And their beliefs, often unfamiliar to their new doctors and nurses, can influence whether they comply with a treatment plan.
It’s a problem most health care organizations recognize with a growing sense of urgency. “Hospitals only have to look outside their doors to see increasingly diverse populations,” says Rick Wade of the American Hospital Association. In response, Wade estimates, some three-quarters of the 5,000 hospitals in the United States have embarked on “cultural competence” programs, an array of patient education, prevention and intervention strategies related to ethnicity, religion and language. Moreover, there’s a growing emphasis on formulating standard policies and practices to address cultural issues of care. But it’s far from clear what those standards should be. “Right now, people are struggling with defining cultural competence and how to achieve it,” says Anne Beal, a physician and senior program officer with the Commonwealth Fund, a New York City foundation focused on health care issues.
That uncertainty doesn’t stem from lack of attention. Reducing disparities in health care has received serious attention since the mid-1980s after a government study painted a bleak picture of care afforded to African Americans and other minorities. Since then, an array of government and private-sector offices and programs have been launched, including the Office of Minority Health (OMH) in the U.S. Department of Health & Human Services. Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare, a 2002 report by the Institute of Medicine (IOM), added to the sense of crisis, documenting lower-quality care for minorities even when insurance status, income, age and severity of illness were taken out of the equation. The IOM’s findings, says Beal, “turned the lens on the medical system itself,” ratcheting up the pressure for fundamental changes.