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To what extent should we protect patients from themselves? Two things happened this week that had me considering this again.
One, some discussion on medical reddit popped up about how to handle people (chiefly young women) requesting sterilization at a young age especially prior to having children. This has obvious implications for regret and forcing people to be locked in to insufficiently considered choices.
Two I was talking to a friend who was complaining about a side effect of laser eye surgery and she said she was not told about the possibility. In talking to her she was very clearly told about the possibility of this side effect but simply didn't get it.
This is not uncommon. Either surgeons half ass the consent process, or patients just completely fail to understand and fully grok what we tell them. Generally both.
A different example - I've had the conversation "X problem is gone because of your medication, if you stop your medication X problem will come back" "okay doc I'm here to complain about X problem, I stopped my medication" a million times. Including with smart and highly educated people. People often don't understand what is told to them and that can include things like life altering surgery.
What do we do with this? Do we let people make mistakes? Where do we draw the line?
This topic comes up very frequently in medicine but the discussion quality is generally very poor "protect them from themselves unless they want such and such political topic in which case sterilize them at their request with no counseling etc etc." I think this community may have something more interesting to say.
I especially don't know how to handle this given the tendency to strongly protect autonomy in some areas but not others.
More general CW implications include the usual trans problem, but also "protecting people from themselves instead of the more specific patients.
In my ideal for a medical system, we'd do an old fashioned meeting-of-the-minds type contract (not the modern unread "terms and conditions" type contract), where the two parties involved (patient and doctor) would discuss all of the ins and outs of the medical intervention until both parties were happy that all risks have been properly communicated and they both have an understanding of what things the doctor would be liable for, and which things the doctor wouldn't be liable for. Then they would both sign the resulting document, and the patient would live with what they got.
However, I realize my proposal is a stillborn one. Standardized contracts and bureaucracies are the easy way of dealing with massive amounts of patients and procedures, and my proposed system would put an undue burden on doctors.
Barring that, I'd at least like doctors to make a good faith effort to communicate all major known risks, as well as known unknowns and unknown unknowns to the patient before they get them to sign the unreadable legalese that they likely have to do before a procedure.
Overall though, I'm in favor of a system that treats adults as adults, responsible for their good and bad outcomes. If somebody with, say, a mobility issue signs up to a procedure which has a 99% chance of completely curing them and a 1% chance of leaving them worse off than they were before, they should be allowed to make the choice to undergo that procedure, and they have to own and live with the results if they end up in the 1% chance world.
I agree that there's a weird disconnect between how the medical system treats sterilization as a primary effect, and as a side effect (in the case of trans people.) My preference would be to resolve things so that childless adult women could make an informed choice to have themselves sterilized regardless, but I get that many doctors are squeamish about such things.
A disclosure sheet listing each major side effect alongside its likelihood would be a simple and relatively easy way to fully communicate the known risks without taking up too much of the doctors’ time. Since every medical intervention lists death as a possible side effect, everyone ignores death as a possibility. That would change if one was listed as coming with a 0.0001% chance of death while another was listed as coming with a 15% chance of death.
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On paper we do a good job of this (although realistically I know a lot of docs half ass the consent process). The issue is that people struggle with risk. 'If I had known I was going to have night vision problems I wouldn't have gotten the eye surgery." Well generally we can't predict that in advance, we can tell you the rate of problems and so on, but that's it. That doesn't stop patients from wanting us to have perfect knowledge and suing when we simply don't.
Yeah, that's it. "this is a very rare side effect" means that someone will get it, but they can't predict it will be you, and the vast majority of people will be just fine. So there's the choice between "effective medicine with rare side-effect, give it and risk the one in ten thousand chance" or "withhold the medication and the definite problem the patient already has gets a lot worse".
It's understandable why doctors choose the first option, and also understandable why patients sue if they happen to be the unlucky one in ten thousand that got the rare but severe side-effect. Nobody is setting out to be deliberately slapdash or stupid.
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