July 16, 2009
One afternoon not long after I finished my training, two sisters, both well-respected professionals in their late 40s, came to the hospital clinic. Both sisters had hepatitis B, and the older sister, like a fair number of chronic hepatitis B patients, had developed liver cancer. She and her sister were hoping that we might be able to remove the tumor.
I remember watching the sisters’ faces turn grim as the younger of the two drew a family tree on the flimsy paper covering the examining table. Under each branch, she wrote out the names of siblings and parents, and I shuddered over the number of “L.C.’s,” her abbreviation for “liver cancer,” this sister scrawled next to a name.
Their parents had immigrated to the United States from China a half-century earlier. In the midst of raising six children, their mother developed and then died from inoperable liver cancer. A little over two decades later, two of their siblings succumbed to the same lethal disease — one brother a few months prior to the sisters’ visit to my clinic, and another brother a few months later.
After the first brother had died, the family members assumed that his untimely death was due to bad luck or perhaps a “cancer gene.” But soon after the second brother was diagnosed, the remaining siblings sifted through their family’s medical records. They discovered that both brothers had had hepatitis B, a viral infection that predisposes individuals to cirrhosis, liver failure and cancer; and they realized that their mother’s symptoms in the years prior to her death were consistent with progressive liver failure from cirrhosis.
They learned that while the incidence of hepatitis B is higher among Asians than among other racial groups in the United States, Chinese are at the highest risk, particularly those who hail from Fujian, the province from which the sisters’ parents had immigrated. Infections could spread insidiously through “vertical transmission,” where infected mothers would unknowingly pass the virus to their newborns during birth. The children then go on to develop a chronic active infection and are predisposed to developing early cirrhosis and liver cancer. If they were female, they run the risk of passing the virus on to a whole new generation of family members.
Over the course of the next few months, the surviving siblings learned that every one of them had been infected with hepatitis B, probably from their mother at birth. While each had developed varying degrees of cirrhosis, they realized that without the necessary close surveillance by a liver specialist, they could die from liver cancer as their brothers and mother had. The sisters spearheaded the effort to find liver specialists who would follow all of them, and it was during this search that they discovered the older sister’s tumor and my clinic.
It would turn out that the older sister’s cancer was small enough to remove surgically. And a year after her operation, I ran into one of the liver specialists I had referred the family to for regular follow-up. The siblings he cared for, I learned, were faring well. “But what a pity,” my colleague said shaking his head. “If only one of the clinicians they had seen earlier had been a little more aware of some of the health concerns of Asian-Americans.”
Over the last two decades, that awareness has been increasing. While researchers have begun to understand the profound extent to which a patient’s cultural background can influence health care, more and more medical schools and training programs have integrated what is termed “cultural competency” into their curricula. “Culture works at all levels,” said Dr. Arthur Kleinman, professor of medical anthropology and psychiatry at Harvard Medical School. “It affects health disparities, communication and interactions in the doctor-patient relationship, the illness experience and health care outcomes.”
Clinicians who are unaware of cultural influences may not only miss important medical implications for a patient but can also inadvertently exacerbate an often already tenuous therapeutic relationship. “From the statistics in the literature,” said Marjorie Kagawa-Singer, a nurse and professor at the School of Public Health of the University of California, Los Angeles, “adherence to a medication or a treatment regimen is usually less than 50 percent. But that figure is further exacerbated when there are cultural variations.”
A physician’s awareness of cultural context can also dramatically affect patients’ perceptions of the quality of care they receive. “So much research has shown that communication is important to the health care experience,” said Nadia Islam, deputy director of New York University’s Center for the Study of Asian American Health. “Communication is not just about language or interpreters; it is also being cognizant of what patients bring with them.” Ms. Islam is co-editor of “Asian American Communities and Health: Context, Research, Policy and Action” (Jossey-Bass, 2009), a recently published book that not only focuses on a growing and hugely diverse cultural group in the United States but also underscores the importance of context in any relationship between a clinician and patient. According to Dr. Islam, when professional caregivers fail to take into account an individual’s context, “patients may hear what the doctor is saying but may not take it to heart in terms of their own health practices.”
Such misunderstandings can even affect a patient’s sense of hope. Jeffrey Caballero, a contributor to the book as well as executive director of the Association of Asian Pacific Community Health Organizations, added, “There’s a rich cultural gap that sometimes needs to be crossed for patients to be able to feel that a provider understands them and that they can have hope.”
For physicians who are struggling with time constraints in their practices, however, juggling all of these considerations successfully during a patient visit can be challenging. “It’s hard to be open and aware of all the issues given the increasing demands on doctors to see more patients in less time,” said Dr. Lydia Gonzalez, a pediatrician who has taught medical school courses in cultural awareness and who practices at the Morris Heights Health Center in the Bronx. “Some clinicians do it really well, others poorly. But I think the important thing is that one has to want to develop this attitude.”
Doing so does not require the acquisition of lots of information — a working knowledge, for example, of how individuals from different cultures may interpret an illness — but rather an increased awareness of the cultural context of patients as well as doctors. “The term ‘cultural competence’ can be limiting,” Dr. Kleinman noted. “It tends to suggest that culture is not fluid and is only important for patients. The danger of the term is that it can then stop conversations altogether rather than opening them.”
“There are cultural issues on the patient’s side and the doctor’s side,” Dr. Kleinman continued, “and both sides should be aware of that and be able to reflect on it in a self-critical way. Physicians bring their own cultural orientations to the relationship, even if they are from the ‘mainstream.’ ”
In addition to their own cultural contexts, doctors also carry their professional one, the values and priorities acquired during training. This “culture of biomedicine” can result in misunderstandings as profound as those that come about as a result of a patient’s particular background.
For instance, because the culture of the medical profession is oriented to the detection and treatment of disease and not to the experience of illness, patients sometimes believe that their physician places little value on how they feel. “It’s not because doctors are innately insensitive,” Dr. Kleinman said. “In their training, part of a physician’s acculturation is learning to view the disease process as fundamentally true and the experience of being ill as a related but less important epiphenomenon. There’s this belief that the experience of being ill will just disappear if we can treat the disease.”
And while culture can often play an important role in treating a patient, there are also situations where it is superfluous. “Culture doesn’t always matter for patients,” Dr. Gonzalez observed. “I think clinicians need to be aware that diseases or issues may be more prevalent in a certain ethnic group, but they should not generalize accordingly.”
The key, Dr. Kleinman advises, is determining “whether culture is really at stake and if so, how it is at stake.” Health care providers need to “show an interest, affirm the person as an individual.” The ability to do so should not be part of a specialized skill set; instead they should be a routine part of how clinicians think about caregiving.
“What you don’t want,” Dr. Kleinman said, “is doctors carrying around plastic cards listing the five things you need to think about when you see, for example, an Asian-American patient. What you want is the ability to inquire, to ask questions.”
Join the discussion on the Well blog, “How Cultural Background Impacts Health.”
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