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December 13, 2004

the centrality of trust

I'm reading Anne Fadiman's The Spirit Catches You and You Fall Down, the story of an epileptic Hmong girl and the cultural misunderstandings and outright tragedies that result when she is treated by American doctors. The book is rich, complex, and moving. Among its many themes, the one that interests me most is the role of trust in medicineóand by extension, in all professions and disciplines.

American doctors are right: epilepsy isn't caused by a spirit that makes people fall down, but rather by electro-chemical "storms" in the brain. They are right, too, that giving an epileptic infant an elaborate set of medications can reduce the chances of severe seizures, thereby improving her odds of normal cognitive development and survival.

However, in order to follow doctors' advice, one must understand it (a difficult matter when complicated prescriptions are written in English and constantly changed, and the parents speak only Hmong and cannot read in any language). One must not only understand but also trust what the doctors say. I would recommend trusting physicians because I believe that their knowledge of disease is based on cumulative, peer-reviewed, basic science, double-blind clinical trials, and other methods that strike me as reliable. I have a general sense that they are motivated by the best interests of their patients. I am impressed that the particular doctors in Anne Fadiman's book are well-trained, hard-working, and have chosen to serve largely indigent populations at high cost to themselves.

However, imagine that you arrived in a strange foreign country basically against your will and had to decide whether to treat your suffering baby daughter as the local doctors advised. These experts do not even pretend to understand epilepsy fully, let alone know how to cure it. Each procedure and medication that they prescribe is painful and invasive; hardly any are expected to produce a noticeable positive effect while you watch. There is an obvious correlation between the horrible tasting medicines that they make you give your child and her painful symptoms, so it seems likely that the former cause the latter. When you leave your baby at the hospital, she frequently comes back distinctly worse, having suffered terribly.

The physicians expect a high degree of respect, deference, and gratitude, but they donít visit your home or inquire about your beliefs and values. During emergencies, you usually find yourself meeting a whole new set of doctors, or reencountering ones who donít remember anything about you. Their expectation of deference can easily be taken as mere arrogance, especially when they threaten you with loss of custody since you are allegedly abusing your child by not following their rules. They believe in the drugs and procedures that they prescribeónot because these things work in ďreal timeĒóbut because they have put their trust and faith in other authorities: drug companies, medical researchers, med-school professors. These authorities are complete strangers to you. Why should you put more faith in the powers that the doctors trust than in the unseen powers you learned about as a child?

I donít assume that Anne Fadiman is a perfectly reliable narrator, a transparent window through which we can observe Hmong culture and follow the true story of Lia Lee. I once spent a single evening tutoring Hmong people for the US Citizenship Exam, and my friend, a White graduate student who had learned Hmong, expressed some polite reservations about Fadimanís account. (He was mainly concerned, I think, that she had won a monopoly position as the interpreter of Hmong-Americans to other Americans). However, no one is perfect, and Fadiman is a remarkable observer. More to the point, the story of Lia Lee would be profoundly credible and disturbing even if it were pure fiction (which it certainly isnít). Trust is fragile, hard to earn and easy to squander. High-tech machines and chemicals cannot improve our health unless we trust them. Modern medical professionals have mechanisms for engendering trust, ranging from their white lab coats and titles to conflicts-of-interest rules and double-blind clinical trials. These ďmechanismsĒ do not, however, include getting to know their patients as human beings or listening to alternative explanations. Many of us will continue to trust doctors because we are strongly committed to the general epistemology of scientific research. But we cannot observe the research itself, so our faith is actually in institutions, not in science. If the institutions are corrupt or have bad priorities, then our faith is foolish. This is why the increasing pace of scandal in medical research is so troubling.

Posted by peterlevine at 2:31 PM | Comments (2) | TrackBack

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