I’ve been somewhat silent over the last several months, I know. Adjusting to life as an attending has been … interesting. Someone once told me that the biggest learning curves in medicine are your clerkship year, your intern year, and your first year as an attending. So true!
Anyway, I’m popping my head up to talk about an issue I’ve been thinking about a lot recently — the ethics of writing about patients. The Green Journal — aka Neurology, flagship journal of the AAN — has a section called Reflections: Neurology and the Humanities. (Personally, I think they really missed a trick by not calling it Reflexions, because come ON.) They are usually personal essays about relationships with patients, challenging situations, professional growth. I love ’em.
Anyway, the Feb 12 2019 Reflections essay, “Lucky and the Root Doctor” by a dude named William Campbell, was a straight-up racist minstrel show. Opening lines:
“My first encounter with him was a side-splitter. He came with his wife, a roly-poly woman with laughing eyes. Reggie had entered the office tapping a long white cane before him. His face was terribly scarred and his eyes were open but opaque and unseeing. When asked what had happened to him, he related that a pistol had blown up in his face 20 years before, causing severe burns and blinding him. Taking his history was entertaining and maddening, with frequent schedule-wrecking but humorous digressions.”
From that shockingly bad opening (both in a literary sense and in a patient care sense — since when is blindness and traumatic injury a “side-splitter”???) the piece just gets increasingly stereotypical and rambling — bizarre obsession with black male sexual prowess, no fewer than three (THREE!) Jolly Mammies, and a sprinkling of voodoo thrown in for good measure. Honestly, Gone with the Wind — that paean to the antebellum South and the glories of the KKK — had more nuanced African-American characters.
I no longer get the print version of the journal (it’s a non-recyclable glossy, and last year they switched to a dumb “visual abstract” format which doesn’t even contain articles, just infographics and typed links to the actual article online, so I told them thanks but no thanks), so I first heard about this essay through a Facebook group for women neurologists, where it generated a great deal of outrage — very appropriately, I thought. I was also contacted by a couple non-neurologists I know who are interested in diversity and health equity, so it was clearly getting attention beyond the nerdy world of neurologists.
The Journal, very rightly though somewhat belatedly, retracted the article (though it was still indexed on Google until I pointed that out to them yesterday). The Reflections section has been suspended indefinitely — which is a shame, and I hope it comes back in a better, peer-reviewed format. The AAN has also announced the creation of an Equity, Diversity, and Inclusion section, which is in my opinion long overdue. (Article in Annals, login required.)
What irritates me, though, is that there seems to be a blowback against these decisions by the AAN. I’m on the Ethics subsection of Synapse, the AAN’s online forum, and there, the retraction has been characterized as “censorship” and pandering to political correctness. One person, who as best I can gather from his profile picture, is a white man, expressed the opinion that a D&I section at the AAN was unnecessary. Another person linked to a blog post by Justin Sattin acknowledging that the essay is “regrettable” (note: this is minimizing terminology — like calling a drone strike on civilians “unfortunate”) but also saying we should forgive Dr. Campbell because he has “authored many papers.”
… the actual fuck?
First of all, journals retract articles all the damn time, and that’s not censorship — that’s the editors deciding that they do not endorse whatever said article was about. Retraction does not make the article go away, especially if it’s already attracted attention from outside sources. Just ask the Lancet editors after they retracted Andrew Wakefield’s autism-MMR paper.
But on a bigger level, I’m so, so tired of white men defending and forgiving white men, when they never seem to extend that courtesy to people of color. I don’t know either Dr. Sattin or Dr. Campbell personally, so I’m not going to go so far as to call them racist (because, you know, white fragility), but I want to point out, on the record, that they are endorsing racist behaviors, whether they are aware of it or not. Implicit bias is a major issue in healthcare and contributes to poor health outcomes, whether because a patient feels unheard by their physician and seeks alternative sources of care — as in this essay — or because physicians don’t treat women and minority patients the way they treat white male patients. (Just the other day, I saw a woman referred to me by the ED after presenting 2 weeks prior with acute onset L arm paresthesias AND CHEST PAIN, and an EKG actually demonstrating an anterior infarct. Cardiology was not consulted when she presented with her textbook acute coronary syndrome, because numbness/tingling must be neurology, right?) Implicit bias also affects med school admissions, meaning unless we do something to change this, we’re going to end up with a medical workforce that looks less and less like the population we are meant to serve.
So yeah, the ethics of writing about patients. I think it’s hugely important for us as physicians to be able to revisit complex cases, whether they are challenging from a medical standpoint or from a sociocultural standpoint. But as with everything we do professionally, it MUST be with the patient in mind. JAMA has a similar series called “Piece of My Mind,” which requires a signed consent by the patient/family to release the story. When the Reflections section returns to the Green Journal — and I sincerely hope it’s when, not if — ensuring that the patient/family has read and approves the piece would be an excellent way to ensure this sort of “regrettable incident” does not happen again.