Sleeping with the Enmity

1 Aug 2008

“I’m not a doctor, but I sleep with one.” It was about five years into my work trying to change how doctors treat kids born with funny-looking bodies that I took to starting my grand rounds presentations with that joke.

“I’m not a doctor, but I sleep with one.” Those eight words set up the terms of our encounter: I know I’m not one of you; I’m just a Ph.D. in medical humanities and bioethics. I’m not pretending to have the clinical experience—or, more importantly, the clinical pain—that you do. But I’m smart and interesting enough that one of your species is willing to sleep with me. So let’s talk.

I learned early on that I had to start with a joke. Most of the doctors I encountered didn’t want to hear what I had come to say—namely that the medical and surgical “normalization” techniques they were using on children born with conditions like genital anomalies, dwarfism, and conjoinment were ethically problematic and possibly ineffective. And they sure as heck didn’t want to hear that there wasn’t even any evidence of medical need for these interventions.

But it took me a while to realize why they didn’t want to hear this. It turns out, while I was saying, “What you’re doing is ethically and scientifically problematic,” they were hearing me say this: You’re bad people.

The self-identities of these doctors—in particular the surgeons—were completely wrapped up with their work. Being good, compassionate, beneficent pediatricians was absolutely central to how they thought about themselves. As a consequence, to them, criticizing what they were doing meant criticizing who they were, or at least my misunderstanding who they were. It also meant I was calling their mentors bad people—a sign that I was crazy at best and really mean at worst.

The problem was that the doctors didn’t tell me this was what they were hearing. They thought it was obvious—after all, they thought it was exactly what I was saying. So I kept trying to engage them with ethics and science. I would try to get them to articulate an argument back to me—“tell me why your approach is not unethical the way I’m describing, show me the studies you have to counter the evidence I’m presenting to you.” But instead I’d get weird responses like: “My patients like me. They invite me to their weddings.” Or “When my patients come back to see me, they bring their Dr. Poppas doll.” These are not your usual longitudinal data points.

In retrospect, I should have figured out the disconnect sooner. After all, the part of my early talks for which the surgeons always sat upright was the part where I talked about which surgeon had discovered what important thing way back when. I knew how important their self-identities, their reputations, their legacies were to them. And I remember early on, when I encountered yet another surgeon who told me “What we’re doing is good—you just happen to be hearing from bad outcomes” I grouched a paraphrase of Winston Churchill at him—“History will vindicate me, and I will write the history”—because I knew that would make him think twice about digging in his heels.

Another reason I should have figured it out is because my self-identity is wrapped up in my work too, and of course it is hard for me to believe that my well-intentioned efforts might be misplaced or even harmful. Yet the very fact that these were (mostly) good, compassionate, beneficent pediatricians was why they couldn’t hear what I was saying.

So now I work differently than I used to. I start with those eight words—“I’m not a doctor, but I sleep with one”—and then acknowledge how well-intentioned everyone has been. I talk about what our shared goals are—patients who are physically, psychologically, and socially well. Then I move on to talk about sorting out what we know and what we don’t know. And I acknowledge how much easier it is for me to stand up and talk about these issues than it is for them to go back to the clinic and actually deal with them.

I’ve become pragmatic in this way, and, I like to think, more sympathetic and mature. But part of me—the part of me that earned a Ph.D. in history and philosophy of science, the part of me that grew up at the Museum of Natural History in New York, the part of me that named my kid after the Copernican astronomer Johannes Kepler—that part of me keeps wishing we could all just be more scientific. That instead of having to the soothe egos and feed the self esteem of people who could not be higher in the game, maybe we could all just be rational, talk about this all rationally, decide what to do based on reasoning and evidence, and not on personality and legacy and reputation.

But the reality is, nothing changes except by relationships. It’s all about who knows who. That’s why it works to start with my eight words. I should have realized this at the very start, in 1996, when Aron, the doctor with whom I sleep, joined me for a trip to go see Cheryl Chase, one of the founders of the intersex rights movement. We were sitting on a hillside at Point Reyes, overlooking the Pacific, having a picnic. Cheryl asked Aron, “How do you change medicine?” and Aron answered, “The first thing you have to know is that most doctors don’t read. You’re not going to change them by writing.” What he meant was something bigger: You’re not going to change them by speaking what you think of as the simple ethical and scientific truth.

Nowadays I spend a lot of time on the phone and over lunches and coffees. I feel sometimes like I’m living in the eighteenth century, in a Jane Austen novel, because I ask this person to give me a written introduction to that person, and then I go see that person and have a bit of tea. I do what the late curator Gretchen Worden described to me as what academics do—“go sniff each other’s theses, and whatnot.” I ask former patients to gently and politely go tell their doctors what really happened to them. (I coach them on how not to appear too emotional, because if they’re too emotional, they’re scary.) I ask parents to write about how they experienced the visit with the specialist, and I read it to a group of specialists when I get a chance. And little by little by little, it’s changing.

Maybe. Because on my way out the door of the doctor whose practice I’m trying to change, I pass the drug rep who is on a first-name basis coming in to sell human growth hormone, and I pass the mother with her funny-looking kid in tow, the mother who just, at the advice of her friends and the morning talk show host she loves so much, had her own face injected with Botox, and I pass the stooped-over beloved mentor whose life work was all about doing it the way I just said is wrong. And I go home and curl up in self-doubt next to the doctor with whom I sleep.

 

(Reprinted from Atrium, Issue 3.)