why rheumatology and, um, death?

I thought after all this coronavirus stuff, we needed a light break. As is often the case these days, this one was inspired by my high school English teacher Mrs. Pharriss. Towards the end of a long e-mail, she asked me:

“Did you have to deal with deaths of patients very often during your medical career?  How did you deal with it?  I should read more about your field—I think I have an old Merck Manual on a bookshelf somewhere—to understand the kinds of diseases you must have treated.  You’ve mentioned lupus, one other rather rare one that your high school friend had, of course, arthritis.  Why did you choose this area of medicine? “

To which I responded:

Dear teacher

Is this an essay assignment or a test you’ve given me?  These questions you’ve asked are very heavy and deep ones.  Let’s start with choice of rheumatology.  The subspecialty is a constant game of Trivial Pursuit and Clue.  I was introduced in second year of medical school when the local rheumatology faculty delivered us 2 series of lectures.  I was immediately fascinated by the weird array of strange and often rare diseases they looked after.  I had never heard anything like it.  I spent some time with the chief of rheumatology, Leif Sorensen  (what a name!) in my senior year, not only seeing some of these oddball diseases up close, but learning it was sometimes possible to do something about them.  It didn’t hurt that my dear grandma Slater had bad arthritis, boring old osteoarthritis of the knees (OAK), but maybe I yearned to be able to do something about that.  Curiously, much of my research effort early on at Michigan focused on OAK and my major procedural efforts, for which I became renowned, over the course of my career focused mainly on OAK.  Barnes provided plenty of distractions to do something else with my talents.  Pulmonary medicine was attractive, as the docs in that field were quite affable and we had fun at conferences.  Gastroenterology had its pull, as it does for many medical residents to this day, not for the prospect of doing high-paying procedures, but for the interesting disorders involving the liver and inflammation of the gastrointestinal tract.  I’d enjoyed  cardiology in med school, mainly the games of trying to sort out a patient’s heart problem by listening to the sounds it makes  and discerning perturbations in the heart’s electrical system by scrutinizing the squiggles on EKG paper; but the life and death heroics of the CCU were not for me.   When I took rotations with the legendary Bevra Hahn, who did not like me as I occasionally left her late afternoon rounds to go to my moonlighting job, I got hooked back into rheumatology.  The fellowship programs I chose to seek were narrow and pretty high powered: UCSF, Hopkins, Barnes and Michigan.  I got little love after visiting UCSF and Hopkins, and Barnes’ young new chief John P. Atkinson (with whom I am still friends) said he would not be able to offer me a slot.  I had been quite the bad boy at Barnes and the reputation stuck.  Only dear old Giles G. Bole took a chance on me at U of M and the relationship became a solid and fulfilling one.  They thought I was terrific (I was) and offered me a job midway through my second fellowship year.  As the young stud steeped in the fires of Barnes, I took on everything.  Rheumatologists are called in not only when a patient with one of their established diseases lands in the hospital, but also when a particular patient has a complex array of symptoms and signs that just might have an autoimmune basis.  I quickly developed a reputation as the guy who didn’t believe any of the other consultants.  But our patients were different!  It led to some clashes with the powers that be which were to punctuate the rest of my career.  I learned to lighten up and realize that the effective consultant could persuade others to see his, correct, point of view.  The practice of rheumatology became much easier in the late 90s with the advent of biologicals.   These drugs actually worked great, and I wouldn’t have to spend each visit deciding which inflamed joints to inject.  Some of the joy of rheumatology began to fade in the last decade or so, as the practice became increasingly corporatized.  Large committees began to decide what constitutes a particular disease, and how best to treat it.  Protocols deigned what to do with our patients, and the satisfaction of figuring things out independently and devising something clever to do about it faded.  With protocols came overseers to see that you adhered to them, and who likes someone looking over your shoulder?  So while I was sad to be forced to give up my practice in 2019, I really wasn’t having that much fun anymore and I’m not terribly sad it’s all gone.

Deaths are rare in Rheumatology.  Our patients die with their diseases, not of them.  We docs are blamed for killing them early, with NSAIDs, opioids, and the myriad biologics permitting all manner of weird infections.  On the consult service, we see our share of deaths, mainly inpatients with multisystem diseases who just become overwhelmed.  I came to tears thinking about your questions while preparing dinner.  It helped I was chopping up a big sweet onion at the time (the sauce turned out delicious).  I thought back to patient deaths that hit me.  There have been a bunch, but that of Sylvia Fryer particularly haunts.  She was a middle-aged woman from a small town outside of Jackson who had hepatitis C, before anyone knew what that was, except me.  She had a rare complication of hepatitis C infection called cryoglobulinemia, in which an excessive immune response to the virus includes some immune proteins that tend to glom up at lower temperatures.  The proteins deposit in critical organs and cause all sorts of trouble.   I was able to bring Sylvia along for a while, but things inevitably progressed.   I recall sitting at her bedside in the ICU, she on a ventilator, me holding her hand thinking how unfair it was she was dying, as she’d fought so hard.  Current hepatitis C drugs would probably have cured her.  Maybe that’s my best death story.  I think I’ve killed only one patient with opioids, one middle aged guy with hepatitis C and joint pain whom I’d strung along with huge amounts of opioids who just stopped showing up one day.  A couple years ago I learned of the sudden death of an older patient with bad rheumatoid arthritis for whom I’d been prescribing a modest chronic dose of opioids.  She had other reasons to keel over.  Those deaths may be more troubling than the ones in hospital, where someone somewhere might think you had a hand.  I realize I entered this profession with a license to kill, but I didn’t intend to apply it.  As Hippocrates wrote Primum non nocere