Get Thee to a Hospital

5 Oct 2007

I just finished reviewing a bioethics anthology for the New England Journal of Medicine. All in all, the volume had a lot of interesting stuff in it—stuff that clinicians engaged in the practices examined ought to know about. But most clinicians are never going to read it.

That’s because of what some bioethicists have called “the ethics gap”. We bioethicists think and fret and write, and then the folks whose work we’re thinking and fretting and writing about go on as they were, unaware of us.

How come?

They’re busy. In fact, they’re often overwhelmed. (I know; I live with one.) And even if they weren’t busy, what would be the odds they’re going to seek out what count as relatively esoteric texts published in locations they would have to work to find? (Would we do that?)

I was talking today about this with my colleague (and former graduate student) April Herndon, and she remembered that it took her a long time to realize she wasn’t going to change the world by publishing one smart paper in a journal somewhere. I remember it took me a while to realize that, too.

Of course, I’m not sure a lot of bioethicists actually do want to change (or even affect) clinical practice. I get the sense a lot of them, especially those coming out of philosophy, want to be important in their own disciplines and leave it at that. If a clinician happens to notice their work, well, that’s nice, but that’s not what they’re going for.

But it is what I’ve been going for. I’ve spent the last ten years working on changing medical practice around intersex, conjoined twinning, and other congenital anomalies. So let me share an insight for others who might be interested in doing something similar: If you want to affect clinicians, go where the clinicians are.

Publish in medical journals. Speak at medical conferences and medical schools.

I realize this isn’t easy. There’s a bias against non-M.D.’s in the M.D. world. (Looks a lot like the bias against non-Ph.D.’s in the Ph.D. world, by the way.) But if you take really seriously the clinical realities of medical practice, and spend time building relationships with clinicians, you can actually break into these worlds. From my experience, I would also say your work is going to get better from having regular feedback from people in the trenches.

If you’re serious about changing medical practice, the best way to do it is the one-two punch: publish in a medical journal, and then make as big a media stink about it as you can, for example, by writing a national editorial about it, or by using relationships you’ve developed with reporters. That way, the busy docs who aren’t reading the medical journals at least hear about what you’re up to through the media.

Be aware, there are costs to doing your work this way. As I’ve learned, people in your own discipline might grow unaware of what you’re up to, and think you’re being unproductive; after all, they’re hanging out in the disciplinary spaces, and you’re in the medical realm. They may also get a bit weirded out by your approach, or may even feel threatened by it. (Been there.) That’s somewhat understandable; medical humanities and bioethics are marginalized enough without people leaping over the disciplinary borders.

On top of that, you may find no one wants to fund you—because no one knows what to make of you. When a reporter recently asked me, after hearing about my work for a good half hour, “How do you fund what you do?”, I answered, laughing, “I sleep with my husband.” That’s sort of true. We have an agreement that his income helps pay for my strange professional habits, habits that make me feel useful. My speaking fees also help. We basically treat my medical reform efforts as charitable work, and I tax-deduct what I can as work expenses.

You’d think breaking into the medical realm might actually increase your income. But I’ve found that clinicians who would never think not to pay a visiting M.D. handsomely might not pay me, even though I’ve got an international reputation bigger than many of their M.D. guests. I remember a few years back when a medical school invited me to speak and made clear there was no money available to pay me. I agreed to go anyway, because that way I could reach present and future docs. Then they sent a stretch limo to pick me up. The driver must have made a hundred and fifty bucks that day. I don’t hold it against him, but give me a break.

My friend and colleague Tod Chambers recently said something to me that stunned me. He said that bioethicists have never managed to stop a clinical practice they found objectionable. I tried to find examples to prove that he was wrong, but I had a hard time doing that. Still, I think it is worth trying to affect practice. But if you want to do that, get out of the ivory tower, and get thee to a hospital. Just take the train if they won’t send a limo. And tax deduct the ticket. It’s worth it.