Thursday, May 5, 2011

Racism--The Gift That Keeps On Giving

My philosophy of bedside medicine is founded on trying to be aware of how patients view the world well before I bring that quarter million-dollar scientific education to bear upon their problems. I've met docs who can form a differential diagnosis with greater length, and in faster time, than me, but I've also observed a lot of docs of that ilk who don't have a clue about how to use their stellar clinical acumen to explain to patients what they are thinking. This inability frequently leads to all sorts of problems for patients and their families, either because they are anxious and don't understand what is being told to them, or because they don't understand instructions and are afraid to ask out of a desire not to appear stupid. Being simultaneously intimidating and clueless can have lethal consequences, even when a doc is just as smart as House.

Put yourself into their shoes, I tell my med students, think about how they're feeling when you're talking to them before you start with the technical talk. Imagine, I say to them, how it feels to be lying there, usually half-naked, while an army of White Coats is standing there at your bedside, looking down at you, speaking in a language that sounds vaguely like English but makes no sense at all. (See this clip here, for instance, from the British TV miniseries The Singing Detective, which illustrates this in simultaneous hilarious and exquisitely painful detail. I mean it--follow that link, team! Not only is it a fantastic, biting satire of academic medical culture, it features a much younger Michael "Dumbledore 2" Gambon as well as Imelda "Dolores Umbridge" Staunton. And though made in the 1980s, the medical language--indeed, the medications!--hasn't changed much.) One thing Billy always does when seeing his hospitalized patients is to sit in a chair at patient's-eye level, and if no chair is present, then he gets down on his knees to communicate. It's symbolic, but I think it means a lot.

Being exposed and vulnerable is a universal condition of patienthood, but there are other factors that influence the physician-patient interaction as well, and race is one of the biggies. I don't believe that every interaction between black and white Americans has to "devolve" to race by necessity, but I sure's hell think that it's something to be aware of when you step into a room as a white doc with an African-American patient. I, nor any of my ancestors, were ever involved in any overtly racist act, but that doesn't mean that I shouldn't at least be cognizant of the fact that African-Americans often are leery of white docs, and not unjustifiably so (more on this in a moment).

Race was on my mind today as I listened to a fascinating lecture about blood transfusions. Most Americans have at least a vague understanding that there are 4 major blood types (A, B, AB, and O) each of which can be described as "Rh positive" or "Rh negative"--thus 8 blood types in total. In order to have a blood transfusion safely, these types must be matched to prevent immune responses. The blood types are distributed across all races making "universal" transfusion a generally easy process. (Though some readers may recall an episode of M*A*S*H* taking the topic of race and blood head-on, when a white GI needing surgery tells the surgeons not to give him "any of that black blood"--no doubt reflecting the attitudes of real people in the 50's, when the scene was set, as well as the early 70's, when the episode was filmed. Plus there's the cultural convention in many Asian communities, especially in Japan, that the ABO blood types correlate with personality, and Japanese are even more keenly aware of their blood types than Americans are of, say, our zodiac signs. So we haven't eliminated this brand of nonsense from humanity just yet, but we're getting there.)

It turns out that the ABO and Rh+/- system is just the beginning, and the immune response to blood is a good deal more complicated than this. But in the majority of cases the model of eight blood types is sufficient to save people with the magic of transfusions. (This assumes that people have ready access to blood, which they often don't, for instance, in many northern Mexican communities, as described here, but in the US that's almost never a problem.) The exceptions to this, where patients have to have a host of other blood cross-typing done, are frequently found among patients of African ancestry, in particular among those who suffer from that quintessentially African disease, Sickle Cell Anemia. Whether this is due to the inherent genetic variation in Africans, or whether it's a process of sickle cell disease, is not fully clear to me, but from a clinician's standpoint it hardly makes any difference. Patients who have requirements beyond the eight common types need to be cross-matched for special blood, sometimes very rare blood indeed. One patient under discussion in the lecture today essentially had only one person who was known to have blood that she could accept--in the entire world. And since that patient's donor (a close relative) was still a child, not so much a help.

Anyway, the likelihood that you'll get a match for that special blood is increased if you have a large pool of donors who more closely resemble you genetically. Meaning: from your ethnic or racial group. So Africans and African-Americans--who constitute a major if not the major group of people with these rare reactions to blood transfusion--are the ones most in need of blood donors of African ancestry. And there's the rub, because African-Americans are far less likely to donate their blood, at the rate of 25 to 50 percent the rate of blood donation among whites. This is very much unlike the situation in a group of transfusion-dependent diseases called thalassemias, which sometimes afflict people of African descent, but more often are seen in Caucasians, who have a much larger pool of donors from which adequate matches can be found, and so there are far fewer transfusion crises and dilemmas.

Why is this? Well, if you don't think that American history, filled with its pernicious racism, is grasping with its fetid hands our modern system of blood donation, then you're missing just as much as the brilliant-but-clueless docs I've described above. Leave aside slavery and all of its ill consequences alone for a moment--just consider the treatment of African-Americans at the hands of doctors, some of whom were employed by the Federal Government of the United States, as they were prevented from being cured of syphilis or bombarded with radiation without awareness or consent. Or the story of Henrietta Lacks, whose ultimately fatal cancer cells became the first human cells cultured outside of the body, remaining the workhorse cells for biomedical scientists to this day, a major source of commerce in the scientific world, worth billions of dollars, while her descendants struggle to afford health insurance.

Think about that while you swallow the statistic on the poor rates of blood donation among African Americans when your next sickler needs a transfusion. Does blood donation cause syphilis? No, of course not--but would you trust a system that had treated your brothers and sisters like this for generations? As the Tuskegee Syphilis Study Legacy Committee Report wrote in 1996: "the [study] continues to cast its long shadow on the contemporary relationship between African Americans and the biomedical community."

Indeed. It has not only done that; it has cruelly deprived some members of its own community the lifeblood it so desperately needs. This is why doctors need to be as aware of history as they are of science.

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