Posted in narrative medicine, neuro, politics, writing

The ethics of writing about patients

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.

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Posted in faculty

Unsolicited

I’m not totally sure why people feel the need to offer unsolicited commentary about other people’s (read: my) choices.

I’m at the movement disorders conference in Hong Kong right now, which means meeting up with former attendings, and a lot of networking. (I’m getting better at this, slowly.) I moved from a high-profile training institution to a faculty job at a place that you have definitely heard of, but does not have the intense academic reputation of the places where I trained. It is in a mid-sized city in the South. So in the eyes of most academically-oriented conferencers, it already has two strikes against it.

Conversations I’ve had with people in the first 24 hours of the conference:

Them: Why would you go there?
Me: They gave me the perfect offer. I’m doing exactly what I thought maybe I’d get to do in 20 years’ time, but to do it straight out of training….
Them: Well, there’s the job, and then there is life.

Them: So how do you like it there?
Me: I’m still getting to know the city and the region, but it’s been great so far. I really like XYZ.
Them: I would never move to the South.

Them: What do you like least about it?
Me: The car culture has been tough. I miss being able to walk or bike almost everywhere. Errands are a little easier with a car, but you don’t engage as much with the world when you’re locked in a 2 ton vehicle, and everything’s a little less spontaneous.
Them: That’s tough. I bet that’s why people are racist. [see below]

Them: Is it segregated?
Me: Some. It’s a majority minority city, but it’s gentrifying hard, and a lot of the wealth is concentrated in newish suburbs, or million-dollar-condo projects downtown. Honestly, though, most segregated place I’ve ever lived was New York City. It was like there was one NYC for the rich and the tourists and the movies, and another for those of us who actually lived there. And “neighborhood feel,” like in Flushing or Washington Heights, are really just a hipster name for segregation.
Them: HOW DARE YOU SAY THAT, NEW YORK IS AWESOME, WHY DO YOU HATE AMERICA.

Them: Are people racist?
Me: Some are. There are good people and bad people everywhere.
Them: Not in the Pacific Northwest!
Me (in my head): Seriously?

I’m not even emotionally connected to this new city (and actually, the decision to take this job was emotionally fraught for other reasons; I am still somewhere in the grieving process on that, so these conversations are really not helping right now), but I’m angered on its behalf that people are so comfortable with spouting broad stereotypes to someone they just met without examining what led them to those ideas — just like the racists they say they hate.

Posted in books, faculty

Exit West

Mohsin Hamid’s newest novel, Exit West, has been on my to-read list for several months. So when I finally got an e-book copy through the library, I devoured it in a weekend, then promptly bought a copy when I found out he was coming to town for a book-signing.

Exit West is what I would call a generous novel. It’s a novel about migration, but not only in the “refugee crisis” version of migration (though yes, that is the main story) but also in the sense of migrating through time. In doing so, it is far kinder to the nativist xenophobes than I am capable of being right now, but I recognize that my best self would be just as empathetic toward the people who feel the world has shifted around them as the people who has shifted around the world.

After the talk, I went up to have my book signed, and as usual, was thoroughly tongue-tied. (I’m going to blame that on the Pinot Gris they were served as part of the book-signing reception, and not my introverted, author-worshipping self.) As I was walking to my car afterwards, I was thinking through all the things I would have said/should have said: that my parents migrated here in the early 1980s, planning to stay for a year or two, but then hey presto I showed up and they stayed because schools and extracurriculars and college and all the reasons a parent subverts their own desires to the hegemony of the child. That they are about to move back to their “hometown” after 35 years away during which time the town has changed out of all recognition. That I’m no stranger to the mental gymnastics of moving back to a familiar-unfamiliar space, and the never-ending “that didn’t used to be here” dance. That this is one of the few novels that captures what it is to be a physician (weirdly, because there are like no physicians in it?) because being a physician requires the constant migration in and out of medicalese, the constant border-crossing and instability of training, the constant tension of “being a doctor” and “being a person.”

Anywho. You all should go read this novel, because it is AMAZING.

Posted in faculty, politics

This article has been bugging me every since I read it last week. NPR doesn’t do comments (probably for the best) but I can’t let it go, because it is so wrong on basic facts.

  1. The Nazi scumbags were not from Charlottesville. They were mostly from Ohio (??). Charlottesville citizens and city council want to take down those stupid statues, but now everyone is afraid that will set off another terrorist invasion. So stop acting like Charlottesville is some sort of hotbed of The South Will Rise Again loonies.
  2. The police response to the Nazi scumbags was absolutely appalling. I’m still mad as hell about Jason Kessler being scurried to safety because someone spit on him; meanwhile DeAndre Harris, rather than the Nazi scumbags who beat him up with metal poles, is the one charged with assault (acquitted, in what feels like the first instance of justice for a black man this century).
  3. Charlottesville, like many cities in the US (I’m looking at you, Philadelphia), has a long history of segregation and suppression. But to write an article about C’ville confronting its racial history without even mentioning Vinegar Hill is just poor journalism.

Mostly, I’m freshly mad because I went to go download a picture of Charlottesville for the desktop of my new computer at work and instead of the mountains or the Lawn or the Downtown Mall, Google Image Search gave me swastikas and blowtorches.

I ended up finding one of the magnificent Pratt Ginkgo, though, which is not too shabby.

Image result for charlottesville pratt ginkgo

Posted in fellowship

Done! Done?

Today was my last day of fellowship. Fifteen years of blood, sweat, and many many tears, and just like that, poof, training is over. I’m an attending!

I feel ready, but also very not ready. I have a job I’m really excited about, but carries a lot more administrative responsibility so I’m terrified of screwing up. Maybe that’s why I’m hedging my bets, academically, and trying to continue clinical research. And also revising the Carrie Buck novel? In, you know, my copious amounts of spare time.  (Our research coordinator asked me the other day if I’m secretly taking Speed, because I will churn out papers overnight. No, Steph, I just have no life.)

I am also really sad about leaving my training program. There are issues with it, as with any large institution, but the people are generally well-meaning, smart, and I have learned a TON. There is also a sense of security when you’re in training, like there is always backup. Whereas as the attending, you ARE the backup. Although they asked me to stay, it wasn’t the best option in terms of the infrastructure I wanted/needed in a job, and they were aware of that. It also can be somewhat awkward to stay on after training, because there is a very real chance that you’ll never be considered a peer to the people who trained you. That’s especially true at a place as hierarchical as this.

So off I go, to a place where I know next to no one. I’ve done this enough times to know that I’ll be deeply homesick for the first year or so, but then I’ll find my book group, my writers’ group, my science society, and I’ll come to love my new city just as much as I do my current one.

So here we go:mutts204-27-15

Posted in fellowship, narrative medicine

Oops

TFW you go to revive a dormant paper for submission to Journal X, then log in to your account for Journal X to check formatting requirements … only to discover you submitted there last June and got rejected in 5 days.

woman dropped fail failure
This free photo lady has a really big head…
Posted in fellowship

Doctors’ Day

So apparently today was National Doctors’ Day, which is just about the Hallmarkiest of holidays. Here’s how this doctor spent it:

Woke up before my alarm (for once!), had ample time to get ready, and yet … still forgot to pack my lunch.

Chatted with a coworker for almost an hour, catching up on all the gossip while I was gone on vacation.

Cleaned the dataset I’m using for my research project.  The last time I used this dataset, I worked in SPSS which is GUI/point-and-click but took me months (MONTHS!) to clean. This time I’m using Stata this time, which I freaking love — I consolidated and cleaned the data in a day and a half! I love you, Stata.

Found a pack of Skittles in my desk drawer. Lunch!

Went to our fellowship didactics — this week was DBS troubleshooting and an overview of the new Abbott/St Jude device, which was super helpful. It was just approved a few months ago; I haven’t had the chance to program it yet, so it was nice to get to play around with the programmer.

Half an hour at the gym to make up for the Skittles for lunch.

Finished reading What Happened. I found it slightly uneven — partly personal memoir (lots of playing with her granddaughter) and partly actual analysis of the wtf-ery created by James Comey et al., but the two parts never really came together in a cohesive way. I also felt there was a lot of I AM HISTORIC! FIRST WOMAN NOMINEE! Which is … true, but also totally erases a long history of women running for president. #stillwithher, though.

Cracked into a pint of Ben & Jerry’s, because.

Happy Doctors’ Day!