As the Supreme Court weighs the University of Michigan's affirmative action program, one of the questions it must consider is, How important is the goal of increasing minority representation in the professions? A study we conducted in the San Jose Latino community suggests the answer, at least in health care, is "very."
The study-End-of-life Issues Personally and Spiritually Explored (ELIPSE)-was initiated in response to the observation by local medical professionals and social service agencies that Latino communities are on the periphery of health care decision making. Although Latinos comprise a third of California's population, only 4 percent of the state's physicians are Latino-and many of them do not speak Spanish.
To assist in the goal of improving the Latino health care experience in the San Jose community, 66 adults agreed to participate in a series of three focus group sessions that explored their attitudes and concerns regarding end-of-life care. Their take on the ethics of end-of-life decision making was different from the mainstream in significant ways.
In these groups, many participants said that having doctors who understand both their language and culture would make a big difference in their medical interactions. They described effective communication as more than just accuracy in translation. Good communication involves a deeper understanding of cultural values such as the importance of strong family bonds.
Strong family ties underlie a clear preference for hearing bad medical news from a family member and not from physicians or nurses. Over 75 percent of the participants wanted the physician to discuss their diagnosis with a family member and, notably, not with them.
This contrasts sharply with what most American physicians are taught about medical ethics, which puts a premium on the value of autonomy-patient control over decision-making. But health care professionals need to be aware that autonomy means different things in different cultural contexts.
A doctor who understands Latino culture will acknowledge this and respect a patient's right not to know. The health care system should be flexible enough to accommodate communication patterns that look different from those within the informed-consent tradition, which insists that doctors and nurses tell a patient everything.
Of course, non-Latino physicians and other health care professionals can develop an appropriate communication pattern with the Latino patient and family. Just asking the simple question-Who do you want me to talk to about your diagnosis?-would respect patient autonomy and the centrality of family, while not overwhelming the ill person with unwanted information, which may be met with resentment.
But the lack of Latino physicians can be a barrier to effective doctor-patient communication. Currently, few physicians can serve as culture brokers for their Latino patients. In 1999, the Latino population to physician ratio was 2,893:1. A study released this month by the UCLA Center for the Study of Latino Health and Culture showed that the majority of newborns in California are now Hispanic, which will surely intensify the problem.
Whether or not we favor the particular remedies used by the University of Michigan to increase minority enrollment in its law school, the problem of minority underrepresentation in all of the professions must be addressed.
Margaret R. McLean is the director of biotechnology and health care ethics at the Markkula Center for Applied Ethics. Margaret A. Graham is assistant professor of anthropology at Santa Clara University. This article originally appeared in the San Jose Mercury News on February 23, 2003.
Questions:
1. Is it the job of the professions to provide "culturally competent" services, or do immigrants have the responsibility of learning how to deal with the American system as it is?
2. How important is the value of autonomy in the health care setting? Should patients receive bad news about their condition whether they want it or not?