Black Hats? Black Hearts? Who’s to Blame for Our Medical System?
I just finished reading Robert Aronowitz’s excellent Unnatural History: Breast Cancer and American Society, where he addresses a paradox: for the past 200 years there’s been a flat-line mortality rate for breast cancer, even though there’s been a great whirlwind of intervention, developing technology, and knowledge accumulation surrounding it. He subversively suggests that the “risk assessments” conducted today are based on misleading, even incorrect, data, and that from this we’ve built up a culture of risk and fear that leads to a blurring of the line between “risk factor” and actually “cancerous disease.” The result is a demand for unnecessarily early screenings, which leads to early treatments for conditions that may have remained benign if let be, or would have been caught at a more reasonable point later on. In the end he thinks all this “the earlier the better” frenzy is both an emotional and material drain on our society.
The book reminded me quite a bit of an article “Letting Go” by Atul Gawande published in the New Yorker this past summer on the way we treat end-of-life care — how ever-improving technologies allow us to try to ever extend life, leading to medicalized, emotionally cold, and often painful experiences of death. Gawande asks our society to take a shot of emotional courage and look death in the face. His point is that if we are able to be more honest about death, we will be able to speak with our families and physicians about what we want our deaths to look like, allowing many of us to seek and accept the no-road-back option of hospice care. Having done this, we would be able to focus on living our last days comfortably, preferably in our home and surrounded by our families. Underlying both Gawande’s and Aronowitz’s arguments (no surprise in the era of health care reform) is the point that these phenomena have evolved from a culture of overtreatment dependent on increased technological capabilities, which has resulted primarily in a waste of resources rather than the betterment of our health (or lives). The question of end-of-life care in particular has the potential to take a more philosophical turn some day: if we reach the point where we are technologically able to just forever sustain life, how will we know where life ends and death begins?
What is most worrying in both these tales is the way in which there is no one culprit — everything works within institutional and discursive systems: the doctor has protocol learned in med school, mandated by his hospital, structured by his relationships with biomedical companies. The patient lives in a world with targeted pharma and genetic testing ads, asking him or her to “determine your risk” and “speak with your doctor.” In both cases there is a doctor-patient relationship shaped by these other relationships, but also by the limits of articulation, and by constructions of risk and responsibility, hope and health.
Getting to the end of Aronowitz’s book, one feels that something is desperately wrong, but one doesn’t quite know where to look. Should medical schools tell doctors to target limits on treatment plans? But at what point does this turn to medical paternalism? Should there be public service announcements asking people to think twice before going to the doctor? But what of those who need to seek treatment and don’t? (I should note that a problem I had with Aronowitz’s book was his lack of a sexuality or body perspective, thus bypassing the dilemma women face in weighing a loss of their understood (sexual) bodily integrity against a (possible) extension of life, which might actually lead them to non-treatment.) How should we regulate direct-to-consumer genetic testing and pharma advertising, and how should we talk about data and numbers that, when making the move from clinical lab to society, from epidemiological study to personalized health, can result in false assumptions and misleading diagnoses?
The point being that all these things need to be changed, yet they all work together in such a tight system that one doesn’t know where or how to begin. Which is why I was surprised by the conclusion to a recent book review in the NYTimes of Carl Elliott’s White Coat, Black Hat. I don’t know Elliott’s work but it seems to be in line with Aronowitz’s — the everyday happenings and ordinary individuals that constitute our problematic, wasteful, and sometimes brutal medical system. After a brief overview of Elliott’s book where she acknowledges all these things, the reviewer, Abigail Zuger, ends:
What a world, what a world, as the melting witch said in “The Wizard of Oz.” But there is one small consolation: at least Dr. Elliott didn’t have to call his book “White Coat, Black Heart.” Now that would have been depressing. The bottom line is that much of what he describes is simply the big business of medicine as we have allowed it to take shape. His bad actors are mostly just that: actors caught up in a script not of their own devising. They all come home in the evening, take off their black hats and hang up their white coats, just regular working stiffs out to make a buck.
Perhaps she was being ironic and I’m missing it, but wouldn’t it be much more heartening if this weren’t “simply the big business of medicine as we have allowed it to take shape”? If there were some obviously evil, black-hearted medicos whom we could identify, prosecute, and remove? Having just talked about “illegal immigrants, packed into shabby, overcrowded rooms with minimal supervision” who act as guinea pigs for new drugs, is now really the time to exculpate all of us because, well, all of us are at fault?