This is a bit tangential to your point (and I'm sorry for your friends' pain!), but the question "what is a diagnosis" is so fascinating to me for so many reasons. Work reasons, parenting reasons. That column in WaPo where people with wild symptoms have mysteries floating around them for years or decades until they get lucky and run across their own personal Gregory House -- I eat that stuff up. What does misdiagnosis mean? How do you know when it's happened? What does it mean when the boundaries move, when new diseases are born and split and combined and fall into disfavor? Are these labels anything more than heuristics, states of mind that help us make decisions about what to do?
We ascribe to physicians an exalted status as the-knowers-of-the-body, and this has drawbacks for everyone involved. That sounds a bit more 'woo' than I mean -- my feet are still grounded in science here and I'm not suggesting some sort of priesthood-of-all-believers equivalent for medicine. But I think "what is going on with your body" really has to be a collaborative process to work well, even if one side of that process knows a lot more science than the other. It shouldn't be 100% top-down. And if my intuition is right and we tend to reify diagnoses a bit too much, in a sort of category error, well, I think that probably plays into this dynamic. It's striking that it's easy to add a diagnosis to a medical record but very difficult to remove one. Nobody wants to be the one to contravene a doctor -- as though in practice a diagnosis can't be wrong. But if that's so, how can we understand it to be right?
I think about my work as a statistician -- in a consulting relationship, I can only work well when it's collaborative. I need to ask the right questions, to stay quiet when it's not my turn to talk, to communicate in a way that the other party doesn't shut down, to model willingness to be wrong. I think the similarities and differences with clinical relationships are illustrative. They too need to build trust and know when to shut up and all that good stuff, but they are saddled with a power dynamic that I can see getting in the way, an expectation that they are the ones with the final say, and that the word of the doctor is written in ink. Should any of this really be written in ink? There was a time before the diagnoses we know were discovered, and there may be some that we will outlive.
"All models are wrong, but some are useful" is the most famous saying in my field (to the point of being sort of trite, I guess). What would medicine look like if we applied that frame to understanding the body?
rambling on diagnoses
We ascribe to physicians an exalted status as the-knowers-of-the-body, and this has drawbacks for everyone involved. That sounds a bit more 'woo' than I mean -- my feet are still grounded in science here and I'm not suggesting some sort of priesthood-of-all-believers equivalent for medicine. But I think "what is going on with your body" really has to be a collaborative process to work well, even if one side of that process knows a lot more science than the other. It shouldn't be 100% top-down. And if my intuition is right and we tend to reify diagnoses a bit too much, in a sort of category error, well, I think that probably plays into this dynamic. It's striking that it's easy to add a diagnosis to a medical record but very difficult to remove one. Nobody wants to be the one to contravene a doctor -- as though in practice a diagnosis can't be wrong. But if that's so, how can we understand it to be right?
I think about my work as a statistician -- in a consulting relationship, I can only work well when it's collaborative. I need to ask the right questions, to stay quiet when it's not my turn to talk, to communicate in a way that the other party doesn't shut down, to model willingness to be wrong. I think the similarities and differences with clinical relationships are illustrative. They too need to build trust and know when to shut up and all that good stuff, but they are saddled with a power dynamic that I can see getting in the way, an expectation that they are the ones with the final say, and that the word of the doctor is written in ink. Should any of this really be written in ink? There was a time before the diagnoses we know were discovered, and there may be some that we will outlive.
"All models are wrong, but some are useful" is the most famous saying in my field (to the point of being sort of trite, I guess). What would medicine look like if we applied that frame to understanding the body?