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I am in two minds on the matter.
Primarily, I have strong libertarian sympathies. I would prefer, for myself, the absolute right to choose any procedure for any reason (personal finance and avoidance of externalities allowing), and my standards for informed consent are "I explained to you, quite simply, that there's always a potential for things to go wrong, and now that they did, that's unfortunate, but you knew what you were getting into".
Unfortunately, this does have negative consequences. I am mostly willing to accept that, but all else failing, I would at least hope for a formal certification of a person as a "sophisticated patient", in much the same way that the FTC declares certain people sophisticated investors and allows them them to indulge in high risk (and high reward!) activities that they deem too dangerous for gullible proles.
In practise, this is a de-facto standard doctors extend to other doctors under their care. The gynecologist we saw would normally refuse to insert an IUD in a nulliparous unmarried woman, but when my girlfriend and I could argue UKMEC guidelines with her and point out that the benefits outweighed the risks (even if not as much as oral contraception), she happily went for it. Similarly, I disagree with the old adage that "doctors make the worst patients".
Bullshit. Sure, a few people are inclined to think they know better than their treating physicians, but the majority, having both referred and been referred to, understand the limits of their competence and can also be relied on to actually know what you mean when rattling off the standard boilerplate, which usually makes normal eyes glaze over.
But this shouldn't be something winked-nudged for other doctors and allied health personnel. If I encounter someone who has done their research and seems generally intelligent, I sincerely wish I could hand out a pass that both indemnifies me from some medicolegal risk if they were to take less than ironclad advice, and also lets them access more experimental therapies without the headache of FDA waivers in terminal cases and so on.
A lot of people from these parts would qualify. Much of the griping about paternalism from doctors here and in adjacent parts of the internet arise from intelligent, often UMC people not realizing that they're not typical in terms of what a normal doctor encounters, and our default priors are heavily biased against accepting it when a patient excitedly advocates for an experimental therapy they read about online (in your case it might be legit, but it is more often a misreading of WebMD or, shudder a Tumblr blog for alternative medicine).
Usually, your doctor does know better. Though a good one should also recognize an informed patient.
I had a terrible day. Overworked, underpaid, but what was most painful was seeing a poor lady with metastatic gall bladder cancer that was all but 100% confirmed. Severely jaundiced and anorexic, multiple distant mets including to the spine, and unlikely to be worth anything but palliation.
Her family was adamant that the diagnosis be kept from her. In the UK, that would be flat out illegal unless I fastidiously document that the patient themselves declined to learn more about their diagnosis. But in India, and many other Asian countries, family members usually handle such matters, especially for old, poorly educated people who are unlikely to take the knowledge of their impending demise well.
"Is it a gallbladder stone?" She asked me hopefully while her family was off haggling with my supervising consultant. I was about to go into a painstaking explanation about her cancer, and did get well into it, but I was rapidly grabbed by her son and daughter and told to please not tell her she was about to die, and certainly not from cancer.
Luckily for me, I doubt she understood half of what I said, especially since my Hindi is only passable, and soon enough, I was tip-toeing around the sudden change in surgical plans and why, a patient with "cholecystitis" was going to be have both an ERCP and an FNAC of a supraclavicular node.
"But my neck is fine doctor! And my back hurts." The PET-CT showing avid uptake disagrees. Maybe the back pain was from a fall a few months back, her daughter prompts. Sure. Maybe. Maybe it's also the mets causing fragility fractures, I don't say.
"Is she going to get better? What does chemotherapy mean?" I get asked by the family, who have processed about 10% of what the senior surgeons have told them. Well, at least I don't have to lie that the sudden pivot to an ERCP will improve her jaundice and QOL if not her life expectancy by much. And you'd hope after 6 months here I'd know how to explain how chemo works. She developed SOB after the OP, ?PE, and I watched the bacon being made as my surgical consultant grabbed a passing CCM doctor (who made the mistake of walking through the ward) and they haggled over what tests met very strict criteria for cost-effectiveness. No ABG for you, a CXR and ECG? Yeah, they can afford it. She got better till she inevitably gets worse.
To add insult to injury, I had a mandatory communications training course that day. Aced it, of course, but I had to chuckle and groan at how divorced from reality much of it was. And then I face-palmed when the final quiz began asking questions about HIPAA, which is not a thing in India and not covered in the course itself, strongly suggesting the material had been designed by ripping off a US source, or perhaps the latter hadn't localized it particularly well. All the actual citations and foot notes should have made me sus in the first place.
Some people are dumb, or simply won't understand no matter how much you dumb things down. We avoid this truth, except where formal diagnosis of mental incompetence lets us firmly but gently usher demented grannies back into the chemo ward, and most importantly that this is true even for seemingly functional members of society.
That's about it. Any wonders I wish we could all be smarter so my chosen preference of letting everyone decide, for better or worse, about their health, would cost less in bodies and money? I'll still pay with mine.
Intelligent patients can be a double edged sword. A smart enough person can read up on a treatment, decide they want it, and then think of "the doctor wants to make sure I understand the consequences" as an obstacle that needs to be solved not by trying to understand anything, but rather by picking the right words to get past the obstacle. And the smarter they are the more they can convince the doctor they've really thought it out without actually thinking it out.
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Jesus fucking christ.
Anyway - thank you for in essence covering my thoughts better than I did.
I think what I struggle with is that people should be allowed to make mistakes, but they should not be allowed to be fooled (or at least we should try and be more proactive in preventing that) but we have this issue where so many big topics are misleading, or political (as the sterilization is) and therefore people may need more protection.
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