Views About Race Cloud Discussions About Disparities
‘Do these labels — “health disparities” and “the achievement gap" — create a more comfortable way for us to talk about contemporary impacts of race?’
Often a few comments stay with me after I finish reporting a story. In the fall, while doing research for a radio series about disparities in health care, I heard such a remark from a doctor who trains other physicians to think about the role they play in the minority health care gap. When I asked him how he addresses the impact of racism, he replied: "We try not to use the 'R' word; it's just not productive."
His comment stayed with me, as I wondered how or whether to raise this as an issue in my story. It didn't make sense to me that "racism" had become an unspoken word among people trying to unravel the roots of racial and ethnic health disparities. So I talked with researchers who are pressing for more frank discussions about everything from the effects of stereotypes to the lack of supermarkets in minority neighborhoods and about the sense of resignation now felt among some blacks and Latinos. Other physicians studying the health gap explained that the complexities involved in the dynamics of doctor-patient relationships make it difficult to focus on seeking and dissecting signs of bias. What they told me is that confrontation of this sort isn't helpful.
This led me to want to know more about the complicated interactions that go on between doctors and patients and how they might contribute to these health disparities. I decided one story in this series would focus on increasing efforts to train doctors and patients. For patients, the goal is becoming more assertive. For doctors, it is to encourage sensitivity. But "sensitivity trainings," with the implication that doctors are insensitive, didn't go over well; over time, these classes became known as "cultural competency" sessions.
Does Training Work?
Cultural competency is part of a broader effort to improve physicians' communication skills. The idea is that learning how to take care of the body isn't enough — doctors must also know how to work effectively with patients. Doctors have great stories about the patients who catch them off guard. There was the Chinese woman who described "wind" four different ways before her physician figured out she was talking about shortness of breath. Another doctor says she was stunned to realize that a Cambodian woman was (accurately) testing her blood-sugar level by tasting her urine.
Many doctors now wonder why their medical school training did not include tips about how to earn a patient's trust. And in several studies I read on health disparities it was found that most black patients are initially wary of white doctors. Patients with whom I spoke brought up the notorious Tuskegee experiment, where some 400 poor black men in Alabama were "studied" rather than treated for syphilis from 1932 to 1972. One social worker told me that many immigrant women she counsels in the Boston area believe white male doctors will try to sterilize them.
Workshops to help minority patients become better advocates for themselves are also relatively new, but it wasn't hard to find participants who would let a radio reporter eavesdrop on their session. In these sessions, they share stories about medical workers who assume they are drug addicts or illiterate. They encourage each other to change doctors if they feel uncomfortable or aren't satisfied with the care. With doctors, however, it took me months to get permission to record a cultural competency training and then I only got the okay from the trainer. Participating doctors didn't know in advance that I would be there.
The session I recorded for use in my story took place at one of the country's top cancer treatment centers. The physicians who attended have been treating cancer patients for 20 to 40 years. They sat around a large conference table as their discussion focused on the results of an online test they'd taken that evaluated their success in caring for minority patients. As part of this test, the doctors had been asked to figure out why several fictional patients weren't responding to care. In one example, Mrs. Bonilla, a woman from the Dominican Republic with breast cancer, stopped taking her tamoxifen. The challenge presented to these top oncologists was to figure out why and persuade her to resume the medication.
One doctor incorrectly assumed that Mrs. Bonilla didn't have health insurance and could not afford the drug. But during this conference table review, he realized that her coverage plan was in the medical record. The trainer asked how he'd overlooked that important detail. The doctor paused for moment and then said, "It must have been innate prejudice" that he said was based on his experience with Latino patients who are uninsured. The trainer gently reminded him that although Latinos do have the highest rates of being uninsured, making that assumption could trigger decisions that harm patients.
Two other physicians argued about what would be the best way to convince Bonilla that tamoxifen is a better treatment than the folk and herbal remedies she prefers. One doctor said his strategy would be to keep giving reluctant patients like her more and more medical evidence about the success of mainstream medical therapies until they agree with his advice. The other said doctors need to ask patients what they think will help and then collaborate on a treatment plan.
A lot of long pauses punctuated this review as the doctors looked at the answers they got right and those considered to be "wrong." Some glanced at my microphone, then didn't offer any comments. Others told me afterwards that the workshop was worth the time and would improve their communication with patients.
But the training session left me wondering if this kind of exercise really does begin to reveal the reasons why black patients with treatable lung cancer are less than half as likely to get needed surgery when compared with white patients with the same diagnosis. Do these workshops help those in the medical profession understand why doctors recommend coronary bypass surgery more often for white men than for black men? A Harvard Medical School doctor who led the lung cancer study used the "R" word in published reports on his findings: "In our society, it is always hard to rule out racism." But he also wrote that "most doctors want to do the right thing. It's a complex situation. It's not just conscious or unconscious racism."
Early in my reporting on this health disparities series, a black colleague told me to avoid using the words "racism" or "discrimination" when I told this story. Her reasoning in telling me this was her belief that using those words causes listeners to go numb or tune out: either the concepts are too loaded, in the case of whites, or worn out, for blacks.
The Role of Race
A few weeks after we aired my series on health disparities, I started working on a collaborative series about the achievement gap in public schools. Half-seriously I asked if what we really needed to do was a larger story to look at the connections between these two growing areas of research. Are the arenas of health and education gaps simply the latest way to measure — or possibly sanitize — the effects of discrimination? Do these labels — "health disparities" and "the achievement gap" — create a more comfortable way for us to talk about contemporary impacts of race? Or do they divert attention away from core questions about why white Americans, generally speaking, have a better shot at a productive life, including a decent education and adequate health care?
As I struggle with what language to use and what issues to raise in reporting on "gaps" such as these, another interview keeps popping into my head. I asked a leading American geneticist about his efforts to clarify the role of race in health disparities. (Predisposition for some diseases is based on a family's genetic history and what part of the world this family comes from and not the color of one's skin.) He threw up his hands, sighed, and said he's ready to stop trying to talk about race and genetics in public forums because the discussion becomes so polarized. The combination of anger and guilt about how minorities have been treated makes having a straightforward discussion difficult, he contends. But from where I sit — listening as I do to many voices talking about these issues — it doesn't seem likely there will be much progress in closing the health and education gaps until we, as a community, find ways to get more comfortable with talking about race.
Martha Bebinger is a reporter for WBUR, a public radio station in Boston, Massachusetts.