When I was twelve, doctors told me I was rarer than one-in-a-million with a condition called sarcotubular myopathy. It’s not a flamboyant disease. Nothing that would make good TV emergency room drama. But apparently I am medically “interesting.”*
I’ve seen hundreds of doctors in my life, many at teaching hospitals where student doctors are a common feature of consultations with specialists. In theory, I enjoy being an active part of the learning process in the field of medicine. In practice, the presence of students fundamentally changes the doctor-patient relationship so that I’m much less the priority at my costly (and sometimes crucial) appointments. A couple times, a doctor with something to prove to his students has left me feeling like the object of abuse.
I’ve had good experiences with student doctors, student nurses and student respiratory therapists (also student nurse’s aides, student x-ray techs, student phlebotomists, etc.) but I’m going to describe one bad experience. Someday soon, I’ll relate my worst medical student experience — this isn’t it. But both happen to have occurred within the last few years at a world-renowned hospital I have generally excellent opinions about.
The neurology department patient waiting rooms all have inaccessible examining tables with fancy dark wood sides that match the decor. In fact, the only accessible examining tables I’ve seen at this world-famous clinic are in the physical medicine department. But I’d seen neurologists before, and the last one had no problem with me remaining in my electric scooter while he tested my reflexes and the strength of a few muscles. The steering column pops out so it’s easy to get close enough to me. I’m just lower than usual and sitting somewhere stable instead of perched on a bench I can’t get to myself and need someone else to hold me upright on.
I hadn’t met this Dr. Neuro before, and he came in with three residents. The students stood quietly in the corner while Dr. Neuro reviewed my medical history with me. All went well until he inquired if I could get up on the examining table and I replied that it was very inconvenient and suggested I stay in my scooter chair. He may well have had excellent reasons for preferring to use the table, but it was clear from his sharp response and demeanor that his sudden shift to insisting I get up on the table was related to the presence of the observing residents.
So we did it his way, with my parents and the residents assisting, and two residents helping me as I struggled to remain sitting atop the table without any useful support. Needless to say, testing the reflexes of a woman tensed to keep her head upright and her body from falling to the floor was impossible. I didn’t stay up there long. It was readily apparent that the only thing to be learned was that I do indeed have severe muscle weakness, as both my patient records and I had declared.
I accept that I may be asked to do physically difficult or uncomfortable things to get medical treatment. I don’t have a problem with that or with attempting things trial-by-error. I also know doctors take each “fact” a patient tells them about themselves with professional scepticism and I’m glad that they do. But I don’t need an ego contest to come between me and my medical care.
I don’t recall the rest of the appointment or if anything useful was determined or planned. Dr. Neuro was gruff and when the appointment ended, one of the residents trailing out behind him quietly apologized to me. It was a memorable appointment only because the residents were clearly embarrassed by their boss, and the boss had weirdly seen me as a threat to his authority. I do wonder what, if anything, was learned by the students that day.
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*One thing that makes me interesting with regard to the diagnosis is that I am not a Hutterite male. Not even close.
Crossposted at The Gimp Parade
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I have personally experienced the arrogance and callousness of doctors. I empathise with your experience.
Ah yes, the disabled as teaching aide. You’d think you’d get paid for it, wouldn’t you?
I was diagnosed this year with Tubular Aggregate Myopathy, following muscle biopsies in April, the slides of which were sent ‘everywhere’ for opinions. Often the response of the consulting pathologists was something like: “Thanks for referring this interesting case to me”. I actually wasn’t given THE diagnosis until August 23rd, when I went to the MDA Clinic in Toledo, Ohio. So, for the period between April and that MDA appointment, I was led to assume that I probably had ALS … muscle wasting, fasiculations, exercise intolerance along with general fatigue. The only thing which didn’t ‘fit’ that possible diagnosis was that I had and still have significant pain, particulary in my shoulder muscles, biceps, forearms and abdominal muscles. My arms and abdominal muscles are actually painful to the touch, almost always. At one point I was taking 12-14 ‘big boy’ Vicodin pills DAILY! I am now wearing Duragesic patches, changing them every 3 days.
This has been a long intro to my question: Has pain been a significant problem with which YOU have had to cope?
Ah yes, the clown car Doctor appointment. How many people can we cram in one tiny exam room?
It really makes you wonder when the neuro stopped caring that he was working with a person, and not a disease…
The students learned to listen to the patient. It wasn’t the best way to teach them, and wasn’t kind to you, but it sounds like it was a very effective demonstration of what NOT to do. Hopefully they will remember, so that it won’t happen in their practices.
I work in a teaching hospital and I personally cannot stand MDs who have GCD (God Complex Disorder). Luckily, the only one in my department has a mild case and reserves his disorder for staff. His patients love him (and he’s a terrific plastics guy, rebuilds cancer victims), so most of us just let him believe he’s God (and avoid him as much as possible).
I found myself nodding along with you. I too have one of those “rare” medical conditions many “regular” doctors have never heard of. Always makes for interesting visits to the PCP, Urgent Care, etc.
Anyway, I too am often used as a “teaching aide” and while I don’t mind in theory being part of the learning process, I DO mind when it is taken for granted that I will assist. One day, and a reknowned facility in the Urgent Care for a strep test, the resident takes my history, which is to say the least long and “interesting.” Remember, I’m sick at the time and am just there for a rapid strep test, which should take all of 15 minutes. The resident gets his attending to sign off (strep test came back negative, and I’d like to get on my merry way to be able to rest and get well). Naturally, the attending physician comes in and asks if his med students can come in and look at my feet and do a quick exam for the sake of learning. Fine I say… but then it takes something ridiculous like another 45 minutes before I see them again and allow them to examine me, etc. Needless to say, I walked out of there feeling like I deserved compensation for my time and patience rather than having to shell out $$ for a copay, but that’s just the nature of the game.
My favorite “worst dr. story” is when I was 17 and in the hospital recovering from a nearly fatal reaction to anesthesia when having my wisdom teeth removed. At this point, I had been in the hospital for over 3 weeks already, but I had finally been moved from the ICU to a regular floor in order to rehab from the whole ordeal. To say I was sick of being poked and prodded is an understatement. I had just been examined by a resident when yet another resident walks in the room and starts “examining” me. No hello, no, I’m going to do X. He just starts doing stuff, and odd stuff at that. At the time, they were all paying attention to my heart and lungs (as that was what was recovering), and here he was poking around my abdomen. I said a few times, admittedly not politely, “The other resident was just here, can’t you just read the chart?” And then, “Why are you feeling my abdomen, no one else does that?” He curtly responded with something like, “Let me do my job.” and finally, as I was complaining, AGAIN, an intern who had walked into the room looked over at the chart he was reading and said, “That patient is in the next room.” He said, “Oh” and quickly left the room. No apology or anything. It was as if I was just an object for his amusement. I was so disgusted.
Anyway, just wanted to share a few of my own stories. I feel your pain!!!
Naturally, the attending physician comes in and asks if his med students can come in and look at my feet and do a quick exam for the sake of learning.
Next time, say “Sure. It’ll cost you $200.” If he or she starts complaining, ask how much they get paid for instructing the students, and if anything else the students use in their education is provided for free.
I also tend to ask doctors their full names. If they start calling me by my first name, I do the same. Some have no problem with that. Others are quite surprised. If they’re going to call me “Ron”, I’m calling them “Fred” or “Jane” or whatever, not “Dr. Jones”.
Alan Siewert: Has pain been a significant problem with which YOU have had to cope?
It’s not part of my disease, but this last year there’s been pain from secondary causes, like my tracheotomy and feeding tube and sitting in a hospital wheelchair instead of my own. When I was intubated, before the trach, they kept me pretty zoned out with fentynol because that’s very uncomfortable. All of that improved enormously when I got home and could keep people from inadvertantly tugging on the tubes. Now I can go weeks without any significant pain at either site.
Interesting to see the same phenomenon from someone who’s subjected to it as part of their condition, rather than situationally.
My dad’s a physician. When I was growing up, he worked at a teaching hospital, and most of my necessary exams were free trade offs (Physician’s consideration). The downside was that since I was outside the paying practice, the doctors involved generally hauled in their students to practice their exam techniques. On one memorable afternoon I recieved a round dozen complete eye exams in succession. I disliked it, but took it as a necessary part of my lot in life as a faculty child. I would be severely annoyed to recieve the same treatment as a standard patient.