PGY-4 · residency

Honoring the Stories of Illness

Once upon a time, as an intern, I wrote a post comparing my life to that of a college friend I ran into on my way home from a brutal MICU shift. It’s predictable: I’m so busy and emotionally exhausted woe is me; she’s living the good life with a toddler at home and a steady job that doesn’t involve pronouncing people dead.

Well. About a year after that post, I took care of her in the hospital. She was very sick. It turns out even back in college when she was so carefree (so I thought) she was dealing with some really serious health problems that worsened over the years. Just goes to show. Anyway, she didn’t do well under my care. We did a brain biopsy, which showed Disease X, and gave her meds. She seemed to do better for a time, to the point where we had real conversations about our college days. She went home; I presented her at an Interesting Case Conference: Look at this super rare disease you only read about in books! Here it is in a real live person!

Then she came back ragingly worse. She went to the MICU, where I was consulted on her (continuity, it’s a beast.) By that time she was too ill to recognize me, I think, or even have a conversation. Eventually she died, and went to autopsy (pathologists say “came to autopsy,” which creeps me out, like there’s a special autopsy chamber where path just waits around all day for dead people to show up). It turns out we had misdiagnosed her. Like, pretty flagrantly. Rare Disease X was a red herring. What she actually died of turned out to be untreatable anyway, but the fact remains that we misdiagnosed her. We might have spared her several weeks of unnecessary treatment.

Shortly thereafter, one of my attendings, who had taken care of her too, came to me asking if I wanted to write this up as a case report. I agreed, but I dragged my heels for a long long time. Partly, yes, I was busy, but also … this was a friend. How could I write a case report of a friend? How was that going to be ok? And yes, it’s hypocritical that I was totally fine presenting my friend as an Interesting Case when we thought we had the diagnosis, but as a case report of a missed diagnosis? That made me nervous.

But another friend pointed out a very true thing: that case reports are how medicine moves forward first. A 2010 report of a 58 yo man with advanced Parkinson’s being unable to walk but able to bike (watch the video) has led to improvements in therapy and understanding of neuroplasticity in patients with PD. So I could honor my deceased friend by acknowledging her story publicly, hopefully improving general understanding and maybe one day down the line, leading to improvements in that brain biopsy test that led us up the garden path in the first place.

Once it was framed like that, honoring a story rather than profiting off the dead, I found the paper much easier to write. It still went through multiple rounds of revisions, of course, but I’m pleased to say that it’s going to be published shortly.

It’s been an instructive process for me, both in terms of the basics of journal publishing but also in terms of grieving my friend. And more to the point, I’ve been reading others’ case reports differently since this whole incident, pausing before the Discussion to imagine the person that was.

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