Comment by UniverseHacker

Comment by UniverseHacker 8 days ago

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Personally, if I were dying and someone kept saying fake nonsense like "you are getting the best care" I'd probably cut off contact with them, or at least wish they would stop. I'd know I'm getting mediocre care like everyone else, that's also part of accepting the reality of the situation. I'd know my doctor probably graduated at the bottom of his/her class or else he/she wouldn't be an authorized provider on an HMO- and he/she probably can't understand or doesn't read the latest medical research on his/her own. And that probably doesn't matter one bit, because the "best care" wouldn't work either.

I might also want them to share technical ideas they think might help, or at least I would tell them if I wanted them to or not. If you decide to experiment on yourself, you can still accept the reality of a terminal illness. For me, that would be part of ending my life with dignity- knowing I sincerely tried to understand and solve the problem my own, and share what I learned with others, just like I did in the rest of my life.

Earw0rm 8 days ago

The best care is not necessarily the best bleeding-edge treatment.

Most medical jobs are only possible at all (without burning out and destroying the person doing them) through them mostly acting in accordance with best practice and training.

The ultra-rich don't have markedly better survival from nasties like GBM than the rest of us, unfortunately, so if better exists, it's not something money can buy.

And where some degree of survival can indeed be bought, the medical industry does at least have a solid record of scaling it out to the professional classes, even if the poor go without.

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  • UniverseHacker 8 days ago

    > The best care is not necessarily the best bleeding-edge treatment

    It's mostly a conceptual thing for me. As a technical person with a hacker/nerd/scientist mindset, I will not be able to trust someone that blindly follows official protocols from some authority they don't personally understand the reasoning or evidence behind.

    For example- I do have a doctor that is a hacker/nerd/scientist that also teaches college biochem courses for fun on the side and he was about to prescribe me a medication, but then based on an offhand comment I had made, realized I've had a number of bad reactions to medications that he knew off the top of his head were metabolized by the same liver enzyme as this new medication. This guy keeps a book about drug metabolism biochemistry on his desk, and the cover is nearly worn off from use.

    I most likely have a SNP in that enzyme, that would have given me another bad reaction. This is deep nerdy biochem knowledge he was not going to get from any official protocol that led to better and safer care. The biggest problem here is we like geeking out on this stuff so much, he almost forgets to actually treat me when I visit him.

    I've had other doctors that even if I had noticed the potential P450 enzyme issue myself, would refuse to listen because they have a fundamentally non-technical mindset, combined with ego issues about being the expert- that are usually made worse not better if I mention that I have professional expertise and training on the underlying biology.

    In truth, I'll admit it is both quite rare to get any real benefit, and legally risky for the doctor to deviate from guidelines based on direct knowledge or understanding.

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    • kerkeslager 6 days ago

      > As a technical person with a hacker/nerd/scientist mindset, I will not be able to trust someone that blindly follows official protocols from some authority they don't personally understand the reasoning or evidence behind.

      I recognize your appeal to community here, and I reject it: this isn't the hacker/nerd/scientist mindset, this is just you inverting the appeal to authority. Hackers/scientists don't accept statements as facts because they come from authority, but they also don't reject statements as facts because they come from authority. Authority is not a basis for accepting OR rejecting facts--authority is completely irrelevant in the establishment of whether something is factual. The hacker/scientist mindset doesn't require that the person in front of you understand the reasoning/evidence behind the protocol--it only requires that there exists valid reasoning/evidence behind the protocol.

      Notably, in this case, the vague "some authority" you refer to is generally an organization that has collected a lot of reasoning and evidence on which to base their official protocols. The general practitioner doesn't understand all that reasoning and evidence because they can't--the human body is way too complex for one person to synthesize all the data on all the various things that could go wrong and treatments. Your general practitioner is merely there to execute treatment accurately, not to understand the treatment. Executing the treatment accurately is bloody hard enough.

      If you don't trust the authority to do the research and come up with effective protocols, that's one thing, but if you don't trust the guy in front of you to execute the protocol accurately, because they don't understand all the reasoning behind it, it's you that's being irrational. Basing your opinions in reasoning and evidence is good; rejecting protocols which have been reasoned and evidenced because of some weird variant of identity politics isn't good.

      Ask yourself this: Do you really understand how an OTC allergy pill works? Do you trust yourself to administer one to yourself? Why doesn't your hacker/nerd/scientist mindset prevent you from trusting yourself to administer a pill, then?

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      • UniverseHacker 4 days ago

        You are completely misunderstanding me- I am not talking about rejecting things just because they come from an authority.

        I fundamentally reject that experts can make universal medical protocols that can be blindly applied by ignorant practitioners without high rates of really bad outcomes. It is done to execute cheap commodity medicine at scale, but it will never compare to having medical care from someone with deep understanding and individual context.

        These type of context-free ignorant protocols will frequently do things to patients that are wildly inappropriate and dangerous in a way that would be obvious to people that actually know what they are doing, but completely missed by the average doctor. For example, a patient with regular bloodwork where every single kidney function related lab result is on the very edge of the acceptable range, but they're all marked green by some official cutoff, so the doctor doesn't even notice the biological pattern being presented- and is blindsided when the patient comes back later on with serious nephropathy.

        Even worse- intelligent people that understand the evidence and the biology will self select out of even participating in developing such protocols- because the whole concept is nonsense. So these protocols are themselves mostly ignorant and outdated, and not developed by competent people.

        One cannot commodify technical knowledge into simple protocols, especially with something as complex and poorly understood as biology. The only time this is optimal is in something extremely routine with no impossible to anticipate exceptions, or in an emergency where there is no time for careful problem solving: e.g. as checklists are used in aviation. In medicine they are only appropriate for first aid type situations.

        Yes, when I have a health problem I generally read the scientific literature and understand it before accepting any treatment, unless it is an emergency where I am unable to. I do understand the mechanism of action for most of the OTC drugs (or as much as is known of them), and I am much more reluctant to administer OTC drugs to myself than most people are. For example, I would not take a Benadryl unless I was having a serious allergic reaction, because of the known risks of anticholinergics. I have a decades of training and scientific research experience in studying and modeling the biological mechanisms of drugs, and have patented drugs that are in clinical trial.

        The following quote sums up my opinion of medical protocols better than I can:

        "Knowledge isn’t a commodity, especially not a fungible commodity, as the medical business sees it. Consciousness and culture are part of the life process. It is exactly the commoditization of medical knowledge that makes it dangerous, and generally stupid. Doctors buy their knowledge, and then resell it over and over; it’s valuable as a commodity, so its value has to be protected by the equivalent of a copyright, the system of laws establishing the profession. Without its special status, its worthlessness would be quickly demonstrated. When A.C. Guyton wrote his textbook of medical physiology (the most widely used text in the world) in the 1950s, it was trash; as it was studied and applied by generations of physicians, it was still trash. The most compliant patients who bought their treatment from the most authoritative, Guytonesque, doctors were buying their own disability and death.

        Each time you learn something, your consciousness becomes something different, and the questions you ask will be different; you don’t know what the next appropriate question will be when you haven’t assimilated the earlier answers. Until you see something as the answer to an urgent question, you can’t see that it has any value. The unexpected can’t be a commodity. When people buy professional knowledge they get what they pay for, a commodity in a system that sustains ignorance." -Ray Peat, PhD

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graemep 8 days ago

Definitely true, and I know that its common for people who are terminally ill to feel the same.

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