Patients pay the price when clinicians don’t treat us like human beings deserving of respect. The frustrating thing is, it’s really not that hard to do better. Along with the rule of “First, do no harm,” just follow the Golden Rule: “Treat others as you wish to be treated yourself.”
In my experience, clinicians break both of these rules in three basic ways.
The first and, in my experience, most common category of harmful patient engagement involves treating us like we’re some hybrid of stupid and crazy. Like we don’t know more about our rare disorder than someone who’s spent five minutes with MedlinePlus, or like we’re making up our symptoms and lived experience for some nefarious purpose. Failure to both listen and believe a patient can lead to poor physical health outcomes (due to wrong/inadequate treatment or misdiagnosis), as well as yet more emotional scarring for patients who most likely have a long history of being disrespected by clinicians.
The second category involves treating us like a med school or CME case study instead of a real person. I’ve experienced this on at least three occasions, when I was consulting clinicians for problems completely unrelated to my XLH, and yet all the clinicians wanted to talk about was my rare disorder. One doctor (not an endocrinologist or anyone with XLH experience) wanted me to designate him my XLH specialist, apparently because a rare disorder was more interesting for him than the routine matters he was actually qualified to treat. (Beyond the problems inherent in his trying to manage a disorder he didn’t know anything about, I had to worry about how well he was managing his patients’ “routine” matters if he was bored with them. I bet his patients didn’t consider their health issues to be “routine.”) The most recent incident was a few weeks back (and I’m fine now), when I was in the emergency room, having just been told that I might have had a heart attack and needed to be admitted for observation, and the ICU doctor came to see me, for what I assumed would be reassuring words about how he would keep me from dying, and instead he led with “You have XLH. That’s so exciting.” Um, no. Not when I think I’m dying. Dying (or, ideally, not dying is a whole lot more exciting for me.)
Finally, the third category of harmful patient engagement comes from trying to impress us with knowledge the clinician doesn’t actually have. The recent ICU doctor who treated me like an “exciting” case study also tried to show off what he’d learned in five minutes of Googling XLH, and in the process got basic facts entirely wrong. Now, I love helping clinicians understand XLH, and will happily do an impromptu overview of the disorder, but not when I’m thinking I could be dying, and I have to form a coherent explanation for why I can’t take the bisphosphonates he’s trying to add to my existing XLH regimen prescribed by actual experts, before he will tell me how he’s going to keep me from dying of a heart attack. Similarly, a dental surgeon once told me, repeatedly, that burosumab was a bisphosphonate (it’s not), and that if I had a tooth extracted while on burosumab, I would likely get osteonecrosis of the jaw, so I would have to stop taking it before he would extract the tooth. In fact, as I told him repeatedly (I even gave him the FDA-approved package insert, which of course he didn’t read), science tells us that burosumab is not a bisphosphonate, it does not work on the same pathway as the bisphosphonate that’s associated with osteonecrosis, and my not being on burosumab would delay the jaw bone’s healing, worsening my outcome instead of improving it. But he wouldn’t listen, because he was so busy proving to me that he knew more than I did about bisphosphonates and XLH.
So, how can clinicians avoid those traps? Easy. Treat us like you’d want to be treated.
It’s fine to find the rare disorder fascinating, and I totally get it (as a freelance ghost writer for lawyers, I loved getting non-routine cases to research and write about, but I wasn’t dealing directly with the affected clients going through difficult times). But save your excitement for chatting with your colleagues, instead of inflicting it on the patient who just wants help with her current crisis. Or at least save it until the patient has had her more immediate issues addressed. Then you’ll likely find that most patients will happily answer respectful questions to sate your curiosity.
If you want to do the right thing, but aren’t sure what to say someone who has a rare disorder you don’t have experience with, I’ve got a template you can memorize in less than a minute, even without a mnemonic, and it will prevent all the issues above (if you truly listen to and believe the response): “I see you have XLH [or autosomal hypophosphatemia or TIO], and I’ve never treated anyone with that before. Is there anything I should know about it to better treat your [current problem]?”
See? Treat us like you’d want to be treated, with the respect due to a real human being, not a classroom hypothetical, and then you’ll do no harm.
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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