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“ Medicine has become a three-way negotiation between you, your doctor, and The Algorithm.” This characterization makes it sound like a good thing. In reality

by jnovek 5y ago

“ Medicine has become a three-way negotiation between you, your doctor, and The Algorithm.” This characterization makes it sound like a good thing. In reality, the doctor’s responsibility is being pushed to the patient because they are overbooked in the name of economic efficiency. As a patient with complex, non-specific medical condition, I can tell you how miserable this is. I can’t count on doctors _at all_ to move the process forward. It’s always me, reading articles on PubMed and coming up with ideas. I’m not medically trained nor am I scientist. It’s a lot of legwork for me normally, but the ways that being sick limits me make it much harder. Further, the emotional and intellectual overhead required to negotiate with medical professionals is high. Back when I could afford to, I saw a neurologist at an office that didn’t accept insurance. She choose to see fewer patients and give them more time, as well as spend time doing research to look for new clues and ideas. This worked really well and I made progress with her. The rest of the American medical system? Gatekeepers that block access to potential treatment pathways until you can convince them it’s worth a try.

rr808 5y ago
I have noticed the same. My wife has some chronic problems. I figured going to a specialist would be able to give some good advice. For a few thousand in fees you'd think the hospital would be able to give you a book or at least a link to some reputable websites, instead we got a photocopied page and told to google it.
arbitrage 5y ago
You experience is similar to mine. It goes even further than that, though. I have seen the relief in a specialists eyes when I present them with research and tell them the decision that they should make for me. I am essentially designing my own treatment and care plans. I am not a medical professional, nor have I any training, either. The United States' healthcare system is fundamentally broken. As it stands, it's probably completely irreparable, as well.
- refurb 5y ago
  I live in a system where doctor's aren't questioned, everyone just assumes they get the best care. It's terrible because people get sub-optimal care. Patients who are proactive in their own treatment are a positive, not a negative.
vasco 5y ago
Even if a doctor spends a bunch of time on you, you should still do research. End of the day you're the person that cares most about your health in the whole world, why should you just leave it to a random expert with good intentions? If you spend time researching and come to them with detailed information about your symptoms, what you already ruled out and things you've tried, as well as a good understanding of your medical history, you'll get better treatment, either from a good or a bad doctor. I agree we should be able to rely on them more, but the point is to get a better outcome, and to do that, being an active participant in your treatment is a great option.
- rightbyte 5y ago
  I care most about my car, house etc in the whole world too. The risk I guess is that being informed might make me want to overrule the experts. On a population scale the advice might be bad. Depends on how good the experts are.
  - vasco 5y ago
    So your opinion is that if research tells you that you should overrule a doctor's opinion, the right course of action is to not bring it up, not do the research in the first place, because the doctor "knows better"? In my opinion if you disagree or have doubts about treatment you should definitely bring those up with your doctor, see what they say about your reservations, and either get convinced or find some second opinion to increase trust in the expert opinion vs your own research. One thing I've learned from living with a doctor for several years is that an informed curious person on a very specific subject knows more than a doctor that has to know about a million things and probably isn't up on medical research papers. Your duty should be to bring up that research to your doctor and bring them up to speed. Once they read those they'll understand them better than you, but before... not a given. Discussion is always better than no discussion. Engineers get thing wrong all the time, but code reviews help. You should help your doctor to minimize mistakes rather than just accepting everything. Not only that, medical history is often wrong. I've often corrected previous notes to a new doctor - learning only then that the previous one hadn't actually understood what I had shared. There's a million ways in which your active involvement and care improve your outcomes. Another time I asked about several aberrations in an x-ray after a surgery, and the doctor admitted there had been a slight mistake during the surgery that chipped a bone, but that it wouldn't have negative consequences. He didn't bring it up until I asked.
gtirloni 5y ago
> Gatekeepers that block access to potential treatment pathways until you can convince them it’s worth a try. You assume they actually know what needs to be done. In my experience, you can see they don't have a clue and aren't willing to do research to learn. They just hand out their usual prescriptions, etc and sometimes hope an exam will give them an obvious answer. On top of that, most doctors only have a very narrow understanding of the human body and don't know when to refer you to some other doctor they will be better equipped to help you.
- salsadip 5y ago
  I‘m really not trying to sound snarky, but - is this the supposedly high quality treatment that U.S. citizens get that is so much more expensive as opposed to the „socialized“ insurance we get in Europe that is cheaper for everybody and supposedly therefore not as good/cutting edge?
  - ironmagma 5y ago
    Depends on which doctor you are going to. We have some of the world’s best doctors but they might be in hospitals or doing a concierge service. You get what you pay for.
    - Afforess 5y ago
      > You get what you pay for. But you don't... that's the whole problem with the American Healthcare industry!
      - derefr 5y ago
        No, with the American health system, you do get what you pay for (i.e. more money ⇒ access to better medicine); but you don’t necessarily pay (the right amount) for what you get (i.e. !(worse medicine ⇒ costs less)). Which is to say: standard-of-care treatments can cost far too much relative to other countries; but also, if you’re willing to throw millions of dollars at private clinics, you can opt your own way into experimental treatments that don’t exist anywhere else in the world.
jonhohle 5y ago
Are there any laws that treat medical providers as fiduciaries? That seems like a minimum bar that insurance companies would want to enforce (at least in the short term when premiums could remain high while treatment cost plummets).
- jmuguy 5y ago
  Well theres the hippocratic oath, but maybe thats little comfort.
- ProjectArcturis 5y ago
  You can sue them for malpractice, that's something, at least. But I can't imagine how bad a doctor would have to be before they were subject to criminal charges. Simply being awful at their job wouldn't do it.
- erikerikson 5y ago
  Insurance companies in the U.S. are barred, I think universally and definitely broadly, by state law from being too profitable. The outcome you describe would result in returned premiums or other profit sinks.
- anotherman554 5y ago
  A doctor's job is to worry about your health, not not how wealthy you are. Quite literally. If a more expensive treatment has a better chance of saving your life, or a more expense test has a better chance of detecting a disease, the Doctor could be sued for malpractice for not ordering it if you die.
adolph 5y ago
> In reality, the doctor’s responsibility is being pushed to the patient In reality, your choice is your responsibility. Even if one could delegate medical power of attorney to a health care provider, it would be unethical for them to hold a dual role. Chronic conditions that are not well characterized and addressed by medicine are awful and as you said are a combined burden: the condition in of itself and the effort necessary to address the condition. The science and practice cannot progress fast enough to address the long tail of rare disease. Informed consent is a principle in medical ethics and medical law that a patient should have sufficient information before making their own free decisions about their medical care. A healthcare provider is often held to have a responsibility to ensure that the consent that a patient gives is informed, and informed consent can apply to a health care intervention on a person, conducting some form of research on a person, or for disclosing a person's information. Informed consent is, in fact, a fundamental principle in the field of health protection, obviously wanting to mark the very close and unavoidable connection between the need for consent and the inviolability of the right to health. https://en.wikipedia.org/wiki/Informed_consent https://en.wikipedia.org/wiki/Informed_consent
- ClumsyPilot 5y ago
  > In reality, your choice is your responsibility. How does that work if: A) doctors frequently refuse to provide treatment or tests the patient is asking for B) If the patient is unconscious, incapacitated, or otherwise unable to make a choice?
  - adolph 5y ago
    A: Find a different gatekeeper. As the parent commented noted, they found relief after getting Xnd opinions. B: There are specific provisions for emergency situations typically guided by state law.
brimble 5y ago
Can confirm. They paint people who google symptoms as kooks or as annoying, but you have to if you ever want to get an actual diagnosis and treatment, because doctors and hospitals are, quite often, worse than Google at figuring out WTF is wrong. Do your best not to end up in a hospital without an advocate (friend, relative) watching out for you. They'll fail to treat you at best, then discharge you with a shrug and a huge bill; and they'll kill you with mistakes, at worst.
- JKCalhoun 5y ago
  I thought expert systems were supposed to replace diagnosis, like three decades ago.
  - loup-vaillant 5y ago
    In an April's fool story where Eliezer Yudkowsky was pretending to come from a rationalist parallel world (or outer planet), he suggested a medical system with a different way to specialize people. Most notably, he suggested we separate diagnosticians and prognosticators from practicians. The former do their best to guess what you have, send you to the right kind of practician, and estimate your possible outcomes (with probability distribution and Bayesian goodness and all). Then whatever practician you chose do their best to treat you. Separating prognosis from practice allows us to have a system where prognosticators are rewarded for their accuracy and calibration, and practicians are rewarded for their outcomes relative to prognosis. Being good doesn't mean having better outcomes, being good means having better outcomes than predicted. I'm not sure how well this system would work in practice, and there may be a huge problem with eliminating the short feedback loops we can have between diagnosis and practice when they're the same person. What should be a nice separation of concern may turn into a communication nightmare. Nevertheless, it is possible that specialised diagnosticians may be better than any expert system.
    - cupofpython 5y ago
      I only support this if I dont get charged for 2 visits
the_only_law 5y ago
At what point can I just purchase old medical machinery on eBay and run my own blood tests and stuff.
- mindslight 5y ago
  I hate to be so negative, but it's likely that by the time you have significant medical conditions to worry about, you will no longer have the time/spirit to engage in such productive playing.
- bsuvc 5y ago
  No need to buy the machinery, unless you really want to. You can order your own tests right now from LabCorp and Quest, through sites like requestatest.
  - ydant 5y ago
    LabCorp and Quest both have their own products for this, too: https://www.ondemand.labcorp.com/ https://www.ondemand.labcorp.com/ https://questdirect.questdiagnostics.com/ https://questdirect.questdiagnostics.com/ Which are just a wrapper for asking one of their in-house doctors to prescribe you the test you requested, without a real review of your need or the actual potential benefit for you in doing so. So it technically meets the letter of the government requirements for medical tests, but not necessarily the intention behind restrictions around tests.
  - andrem 5y ago
    Does anyone know of EU based alternatives to the above?
    - lmt55 5y ago
      Yes, social democracy and the welfare state.
      - xeromal 5y ago
        This isn't a helpful answer.
TheRealDunkirk 5y ago
I have been struggling with what I have come to understand is a very rare neurological condition, which I've had for over a decade, but which became chronic just over a year ago. I liken my process over this last year to being a general contractor of my health, hiring migrants at the Home Depot parking lot for the day. I've been through 8 doctors now. I've had 4 specialists in different areas tell me that there was nothing they could do for me, and just leave me hanging, without even giving me an idea of what to look at next. The only reason I've been able to get any help was because my wife just happened to stumble on a couple of doctors (who work together) by researching my symptoms online. Luckily, the last two have identified my problem, confirmed the diagnosis, and one of them just operated on my back a week ago. During this year, I wasted time, health, and money on a surgery I didn't need, and which the specialist who performed it SHOULD have known wouldn't help. I can't help but think that he saw an opportunity to do a surgery, covered by my full-blown, "Cadillac" insurance plan, that might have helped, and he took it. Now I've had an experimental surgery (i.e., uncovered by insurance), and two trips to California. I figure I'm running about $30,000 out of pocket on this whole fiasco. The good news is that the surgery seems to have been a success, but I won't know for sure for 3 to 6 months. Maybe even a year. > I can’t count on doctors _at all_ to move the process forward. My feelings directly echo this. No one in this process is responsible for my overall HEALTH. I'm old enough to remember that it didn't feel like this. Your PCP would have been the "general contractor" several decades ago. Now, all anyone cares about is selling me a service, and then getting paid. And my PCP is notorious for trying to upsell me (per the FA) and get me to do tests and labs that I don't need.
cupofpython 5y ago
>I can’t count on doctors _at all_ to move the process forward. This has been my experience as well dealing with fatigue. I was 25 when I finally got diagnosed with sleep apnea, after over a decade of symptoms. How something so common could go unnoticed by the adults and professional doctors in my life astonishes me still today. Eventually, thanks to ego, I questioned the narrative that I was just normal and lazy. Without the internet, I might not have ever learned that sleep studies even exist. I was more than half-asleep for all of my schooling, college, and early professional years. I've spent the last 5+ years trying to catch up.
- ClumsyPilot 5y ago
  > How something so common could go unnoticed by the adults and professional doctors in my life astonishes me still today. A friend of mine was struggling with a weird disease, 7 years and 5 doctors later he finally found the cause -> vitamin D deficiency.
  - cupofpython 5y ago
    ironically my situation was the opposite. My vitamin D was a bit lower than the acceptable range so I kept getting brushed off until I fixed that. It was kind of hard to fix when I was dragging through life by a hazy thread though I can be a PCP check it out - What is the most easily observable "defect" that's tangentially related to your symptoms? What is the most common treatment for that defect? Next patient.
- jrockway 5y ago
  I think the situation has improved there in the last couple years. I had a friend who I suspected of having sleep apnea. She called her doctor and asked for a sleep study. They gave her a device to wear while sleeping and the diagnosis of sleep apnea came the next day. Getting insurance to approve the CPAP, though... that is still an open problem. Weeks later, no treatment for diagnosed disease.
  - avgDev 5y ago
Auracle 5y ago
For anyone reading this, I've found good success in printing out actual studies or other relevant literature and bringing it to the doctor. It lets them know that while you've done your own research, it wasn't stupid YouTube research.
raxxorraxor 5y ago
If you have something exotic you are basically on your own. Maybe you live outside the city where a doctor knows every patient by name and is really invested in research or you find a clinical study that might align with your conditions, but chances for that latter are extremely low.
cm2187 5y ago
Not saying that you are wrong, there are bad doctors like any other profession. But in general, the counterpoint to that view is that medicine is one of the only professions that never industrialised. You have to put a highly trained MD in front of every patient for every problem. It just doesn't scale. And some patients have the expectation that this MD should also cuddle them, provide emotional support and listen to their life. I am glad when I see a doctor for something and I am in and out within 5 minutes, it makes me feel that I resolved my problem without burdening a precious resource.
DrBoring 5y ago
In my experience as a software developer, I've grouped my peers into a few different categories. This is just a rough estimate based a small sample set, there are probably various gradients in-between. 1. Super coders: These are the coders who write the algorithms that pave the way for coders below them. 2. Natural coders: Competent coders who take to the craft easily. Can easily learn new things, but probably won't be designing the next great video codec. (I fall here) 3. Amateur coders: that somehow got hired. These are the coders that you curse because you're always cleaning up after them. ... I have a theory that the same medical professionals have similar categories. This theory was first formed when I once saw a doctor who, on my first visit, regaled me with stories of taking Uber into the city for a night of drinking. I'd put this guy in the lowest category of medical professionals. He's there to make money by providing a service with little regard for the long term outcomes of his patients. There is more to the ranking than his crass unprofessional behavior. Upon leaving the appointment, I was given a card with a request that I rate him on some rate-my-doctor.com ... It had the same slimy feeling as one of those "give us 5 stars" cards found inside the box of many product sold on Amazon.
- xzel 5y ago
  I totally agree with you but I'm pretty sure you just described the Normal distribution. People need to stop putting certain occupations on a pedestal. I've had good doctors and bad doctors, largely the latter. Tbh, most doctors don't have the time to be good doctors, due to how most hospitals operate, so it's really tough to judge them fairly. Also to add I'm only discussing US hospitals I haven't had enough experience outside the US for any of this to be applicable outside of it. My small amount of experience with Drs in Tokyo and Prague were great.
gravypod 5y ago
To add some more anecdata: I've been going to a local clinic by where I live (a very poor area) for a little while. Some time ago I had a full blood workup on intake and it turned out my liver enzymes were out of range by like 5% of the standard deviation. They were in range for what the NHS said was normal for someone in their 40s and I'm in my early 20s. I took this seriously and made some changes. I went back for a follow up I had scheduled for 6 months later. I met with a different doctor this time and she looked at my charts, asked why I was here, I explained I fasted over night and wanted to take a liver function test and I needed her to order one. She argued that "It's fine, you're not even that over the maximum!" and "Do you feel pain? If not you're fine." From my research there are both completely false statements when it comes to increase in this enzyme at my age range. Everyone said that if they see an increase in 6 months that's a sign of a larger issue and it's worth getting the test since your insurance would cover it (which mine did) just to be safe. After telling her I wasn't leaving until she ordered the test she opened her laptop to enter it into the EMR. I saw her open Google, copy "Hepatic" from "Hepatic Function Test" on my previous labs and then read the popup Google showed me out loud: "Liver.. ok good" and then order the test in the EMR again. Some doctors haven't got a clue. It's unpopular to say because it's a convenient fiction to think you will get good care from any qualified doctor but when one doesn't know what "Hepatic" means then I don't know what to think.
ALittleLight 5y ago
A few years ago I noticed my stool was unusually dark (sorry for too much information). I did some googling and discovered this was an indication of blood in stool. I went to the pharmacy to buy a fecal occult blood test - a strip of paper that you add to the toilet bowl and it changes color if it detects blood in the water. When I got a positive result I retrieved my strip with tweezers and put it in a ziploc bag and went to go see a doctor. The doctor decided this was an ulcer and said the ulcer could be bacterial, viral, or idiopathic (meaning without a cause). His solution was to prescribe an anti-bacterial and a steroid and to take both. I asked if there would be any complications or drawbacks to taking both, and he said there would not. I asked if I should take one first and then the other so I could narrow down whether the ulcer was bacterial or viral. The doctor thought this was a good idea and said I could do it if I wanted. I asked if I should take the medications in any specific order and he said it did not matter. I went home and read up on the two medications he had prescribed. Sure enough, the steroid would make a bacterial infection worse. Following the doctor's advice, without my own research, could have made things worse. Without doing my own diagnosing and testing I would have had a much longer time to treatment too. (Wound up going away with the anti-biotics)
- whatshisface 5y ago
  If you were on both at once would the antibiotics have stopped the steroids from making it worse?
  - ALittleLight 5y ago
    I don't know that. My research didn't turn up anything about taking both at once. I think, either way, it would have been safer to try anti-biotics first then the steroids. It's not like I was suffering from the ulcer, I had time to experiment, so why not go with the simplest and safest treatment route?
awinter-py 5y ago
ugh yes re gatekeeping -- maybe there's an argument for requiring a prescription for some treatments, but at least in the US it's illegal for patients to self-order diagnostic testing. the new york AG sued a lab for doing walk-in blood tests without a prescription 'didn't accept insurance' is interesting -- in the econtalk episode with the surgery center of oklahoma, the guest claims that he's able to offer better medical outcomes by being out of the insurance system, and implies that billing things at a mainstream hospital has become so hard that it consumes more mental cycles than medicine it seems like the medical system as-is isn't the right service for people who are fighting the system to get a diagnosis; I wonder if there's a different model that would work better or tbh a specialized concierge doctor that just prescribes things that you ask for
foobarian 5y ago
It seems that they have very little incentive to take risks/deviate from the common path. Why help an outlier patient, when even if their unusual treatment doesn't do any harm, it could be wrongfully associated with some random bad outcome? With the system set up like this, game theory basically guarantees we end up with the state as OP describes.
Phrodo_00 5y ago
> I can’t count on doctors _at all_ to move the process forward. It’s always me, reading articles on PubMed and coming up with ideas. This seems to be the case with most medicine. Doctors in the US don't seem comfortable making suggestions. I recently got appendicitis and at first they only offered an appendectomy as a thing I could do (or not do). I had to specifically ask for a recommendation to get someone actually recommend a path, and this probably is one of the most routine cases in an ER. Can't imagine having something more complex.
AussieWog93 5y ago
>The rest of the American medical system? Gatekeepers that block access to potential treatment pathways until you can convince them it’s worth a try. It's not just America. We have exactly the same issues here in Australia.
kromem 5y ago
On the other hand, I just had a lengthy conversation with my dad on why he shouldn't drink chlorine dioxide, and that a Bitchute video from a guy who got a "doctor's of philosophy of medicine" from a diploma mill who had a patent application on drinking it to cure COVID, was selling books and lectures on his crockpotery, and had charges brought against him for two deaths resulting from drinking the thing might not be the best authority on the topic. For people that are very good at research, self-advocacy and research is absolutely a night and day difference from just going in to the doctor for 15 minutes and being rushed through the system. If not for that in my own chronic health condition, I'd be on immune suppressants right now vs a much lighter treatment regimen in conjunction with generic/supplements supported in limited academic research abroad (the funding bias in research for patented vs generic/non-patentable treatments is its own topic). But that's not the majority of people, and far too many think that they are capable of "doing their own research" when they aren't equipped to do so at all. Particularly when it comes to medicine, that's a dangerous misconception, and Dunning-Kreuger is actively killing people who can't discern between snake oil and a meta-analysis. So many of the people doctors are dealing with that are Googling ARE idiots who endanger themselves with their 'research.' Which sucks for the people who are actually good researchers and dealing with biases towards self-research. Though in my experience, typically good doctors very quickly realize you're adequate at research and work with you as a treatment partner, and it's the people like my dad who will fight against actual research efforts in a quest for confirmation bias.
- daddylongstroke 5y ago
  Some things to think about. I personally know of a friend who walked into a Dr. office in the "top hospital" in Chicago, described her symptoms, and the Dr. without making eye contact, or saying anything, pulled out his smartphone, and googled every symptom she described. Then he said something like "lose 15 lbs. and come back if its still an issue". :-P More importantly though, when deferring to "experts" in medical practice, you should ask yourself, "has the amount of money we've spent and 'expert training' these practitioners have gotten, and the 'breakthroughs in medicine' that they claim have occurred over the last 80 years, resulted in a statistically significant and measurable positive patient outcome?" What I'm seeing is, since the advent of hospitalization and deferral to medical 'experts', we've as a society, become much more fragile, non-resilient, addicted, overweight, and unhealthy.
ClumsyPilot 5y ago
When a business personn asks me for a new feature I spend a couple hours discussing their requirements and customer needs. I make sure to ask the right questions and draw out corner cases they haven't thought of. The business person has a bit of training to put forwar their requirements correctly A doctor might spend 5 minutes listening to your symptoms, you have no training on how to recall them correctly or bring up the right ones. Another 5 minutes might be spent discussing treatment. And you life might depend on this
PolygonSheep 5y ago
Litigation/malpractice probably plays a role too. I imagine doctors are under a lot of pressure to do everything by the book. If it works, awesome. If it fails, they can say they followed best practices and it's not their fault. If they deviate for any reason, they do so entirely at their own risk if/when it blows up in their face. It's just not worth it (in the expected value sense) to step out of line.
treeman79 5y ago
Copied from an older post. —— Congratulations, you have earned the achievement “chronic condition”. Your rewards are as follows. You have max exhaustion at all hours of the day! Exercise recovery is bumped from next day to 2 weeks! Your pain level is now on par with dying cancer patients! Everyone now considers you lazy and incompetent! Doctors now blame all symptoms on anxiety! You gain +1 to medical research ability. But -20 to Reputation. You now get spontaneous and useless medical advise from people that believe in essential oil. You are now on timer with your job until sympathy runs out! Disability now can mock you openly as clearly your faking and don’t have a real condition! You are now a burden to your family! +10 sneak score; you quickly learn to hide your suffering! +20 to loneliness! -20 to persuasion! Asking for help gets little from doctor's. +10 Planning! Your kids may be orphans soon, make sure they get taken care of. Read fine print on death benefits. ——- Staying positive when you have a chronic condition is incredibly difficult. Your not going to get through it without losing your mind now and then.

by jnovek 5y ago

rr808 5y ago

I have noticed the same. My wife has some chronic problems. I figured going to a specialist would be able to give some good advice. For a few thousand in fees you'd think the hospital would be able to give you a book or at least a link to some reputable websites, instead we got a photocopied page and told to google it.

arbitrage 5y ago

You experience is similar to mine. It goes even further than that, though. I have seen the relief in a specialists eyes when I present them with research and tell them the decision that they should make for me. I am essentially designing my own treatment and care plans. I am not a medical professional, nor have I any training, either. The United States' healthcare system is fundamentally broken. As it stands, it's probably completely irreparable, as well.

refurb 5y ago
I live in a system where doctor's aren't questioned, everyone just assumes they get the best care. It's terrible because people get sub-optimal care. Patients who are proactive in their own treatment are a positive, not a negative.

vasco 5y ago

Even if a doctor spends a bunch of time on you, you should still do research. End of the day you're the person that cares most about your health in the whole world, why should you just leave it to a random expert with good intentions? If you spend time researching and come to them with detailed information about your symptoms, what you already ruled out and things you've tried, as well as a good understanding of your medical history, you'll get better treatment, either from a good or a bad doctor. I agree we should be able to rely on them more, but the point is to get a better outcome, and to do that, being an active participant in your treatment is a great option.

rightbyte 5y ago
I care most about my car, house etc in the whole world too. The risk I guess is that being informed might make me want to overrule the experts. On a population scale the advice might be bad. Depends on how good the experts are.
- vasco 5y ago
  So your opinion is that if research tells you that you should overrule a doctor's opinion, the right course of action is to not bring it up, not do the research in the first place, because the doctor "knows better"? In my opinion if you disagree or have doubts about treatment you should definitely bring those up with your doctor, see what they say about your reservations, and either get convinced or find some second opinion to increase trust in the expert opinion vs your own research. One thing I've learned from living with a doctor for several years is that an informed curious person on a very specific subject knows more than a doctor that has to know about a million things and probably isn't up on medical research papers. Your duty should be to bring up that research to your doctor and bring them up to speed. Once they read those they'll understand them better than you, but before... not a given. Discussion is always better than no discussion. Engineers get thing wrong all the time, but code reviews help. You should help your doctor to minimize mistakes rather than just accepting everything. Not only that, medical history is often wrong. I've often corrected previous notes to a new doctor - learning only then that the previous one hadn't actually understood what I had shared. There's a million ways in which your active involvement and care improve your outcomes. Another time I asked about several aberrations in an x-ray after a surgery, and the doctor admitted there had been a slight mistake during the surgery that chipped a bone, but that it wouldn't have negative consequences. He didn't bring it up until I asked.

gtirloni 5y ago

> Gatekeepers that block access to potential treatment pathways until you can convince them it’s worth a try. You assume they actually know what needs to be done. In my experience, you can see they don't have a clue and aren't willing to do research to learn. They just hand out their usual prescriptions, etc and sometimes hope an exam will give them an obvious answer. On top of that, most doctors only have a very narrow understanding of the human body and don't know when to refer you to some other doctor they will be better equipped to help you.

salsadip 5y ago
I‘m really not trying to sound snarky, but - is this the supposedly high quality treatment that U.S. citizens get that is so much more expensive as opposed to the „socialized“ insurance we get in Europe that is cheaper for everybody and supposedly therefore not as good/cutting edge?
- ironmagma 5y ago
  Depends on which doctor you are going to. We have some of the world’s best doctors but they might be in hospitals or doing a concierge service. You get what you pay for.
  - Afforess 5y ago
    > You get what you pay for. But you don't... that's the whole problem with the American Healthcare industry!
    - derefr 5y ago
      No, with the American health system, you do get what you pay for (i.e. more money ⇒ access to better medicine); but you don’t necessarily pay (the right amount) for what you get (i.e. !(worse medicine ⇒ costs less)). Which is to say: standard-of-care treatments can cost far too much relative to other countries; but also, if you’re willing to throw millions of dollars at private clinics, you can opt your own way into experimental treatments that don’t exist anywhere else in the world.

jonhohle 5y ago

Are there any laws that treat medical providers as fiduciaries? That seems like a minimum bar that insurance companies would want to enforce (at least in the short term when premiums could remain high while treatment cost plummets).

jmuguy 5y ago
Well theres the hippocratic oath, but maybe thats little comfort.
ProjectArcturis 5y ago
You can sue them for malpractice, that's something, at least. But I can't imagine how bad a doctor would have to be before they were subject to criminal charges. Simply being awful at their job wouldn't do it.
erikerikson 5y ago
Insurance companies in the U.S. are barred, I think universally and definitely broadly, by state law from being too profitable. The outcome you describe would result in returned premiums or other profit sinks.
anotherman554 5y ago
A doctor's job is to worry about your health, not not how wealthy you are. Quite literally. If a more expensive treatment has a better chance of saving your life, or a more expense test has a better chance of detecting a disease, the Doctor could be sued for malpractice for not ordering it if you die.

adolph 5y ago

> In reality, the doctor’s responsibility is being pushed to the patient In reality, your choice is your responsibility. Even if one could delegate medical power of attorney to a health care provider, it would be unethical for them to hold a dual role. Chronic conditions that are not well characterized and addressed by medicine are awful and as you said are a combined burden: the condition in of itself and the effort necessary to address the condition. The science and practice cannot progress fast enough to address the long tail of rare disease. Informed consent is a principle in medical ethics and medical law that a patient should have sufficient information before making their own free decisions about their medical care. A healthcare provider is often held to have a responsibility to ensure that the consent that a patient gives is informed, and informed consent can apply to a health care intervention on a person, conducting some form of research on a person, or for disclosing a person's information. Informed consent is, in fact, a fundamental principle in the field of health protection, obviously wanting to mark the very close and unavoidable connection between the need for consent and the inviolability of the right to health. https://en.wikipedia.org/wiki/Informed_consent https://en.wikipedia.org/wiki/Informed_consent

ClumsyPilot 5y ago
> In reality, your choice is your responsibility. How does that work if: A) doctors frequently refuse to provide treatment or tests the patient is asking for B) If the patient is unconscious, incapacitated, or otherwise unable to make a choice?
- adolph 5y ago
  A: Find a different gatekeeper. As the parent commented noted, they found relief after getting Xnd opinions. B: There are specific provisions for emergency situations typically guided by state law.

brimble 5y ago

Can confirm. They paint people who google symptoms as kooks or as annoying, but you have to if you ever want to get an actual diagnosis and treatment, because doctors and hospitals are, quite often, worse than Google at figuring out WTF is wrong. Do your best not to end up in a hospital without an advocate (friend, relative) watching out for you. They'll fail to treat you at best, then discharge you with a shrug and a huge bill; and they'll kill you with mistakes, at worst.

JKCalhoun 5y ago
I thought expert systems were supposed to replace diagnosis, like three decades ago.
- loup-vaillant 5y ago
  In an April's fool story where Eliezer Yudkowsky was pretending to come from a rationalist parallel world (or outer planet), he suggested a medical system with a different way to specialize people. Most notably, he suggested we separate diagnosticians and prognosticators from practicians. The former do their best to guess what you have, send you to the right kind of practician, and estimate your possible outcomes (with probability distribution and Bayesian goodness and all). Then whatever practician you chose do their best to treat you. Separating prognosis from practice allows us to have a system where prognosticators are rewarded for their accuracy and calibration, and practicians are rewarded for their outcomes relative to prognosis. Being good doesn't mean having better outcomes, being good means having better outcomes than predicted. I'm not sure how well this system would work in practice, and there may be a huge problem with eliminating the short feedback loops we can have between diagnosis and practice when they're the same person. What should be a nice separation of concern may turn into a communication nightmare. Nevertheless, it is possible that specialised diagnosticians may be better than any expert system.
  - cupofpython 5y ago
    I only support this if I dont get charged for 2 visits

the_only_law 5y ago

At what point can I just purchase old medical machinery on eBay and run my own blood tests and stuff.

mindslight 5y ago
I hate to be so negative, but it's likely that by the time you have significant medical conditions to worry about, you will no longer have the time/spirit to engage in such productive playing.
bsuvc 5y ago
No need to buy the machinery, unless you really want to. You can order your own tests right now from LabCorp and Quest, through sites like requestatest.
- ydant 5y ago
  LabCorp and Quest both have their own products for this, too: https://www.ondemand.labcorp.com/ https://www.ondemand.labcorp.com/ https://questdirect.questdiagnostics.com/ https://questdirect.questdiagnostics.com/ Which are just a wrapper for asking one of their in-house doctors to prescribe you the test you requested, without a real review of your need or the actual potential benefit for you in doing so. So it technically meets the letter of the government requirements for medical tests, but not necessarily the intention behind restrictions around tests.
- andrem 5y ago
  Does anyone know of EU based alternatives to the above?
  - lmt55 5y ago
    Yes, social democracy and the welfare state.
    - xeromal 5y ago
      This isn't a helpful answer.

TheRealDunkirk 5y ago

I have been struggling with what I have come to understand is a very rare neurological condition, which I've had for over a decade, but which became chronic just over a year ago. I liken my process over this last year to being a general contractor of my health, hiring migrants at the Home Depot parking lot for the day. I've been through 8 doctors now. I've had 4 specialists in different areas tell me that there was nothing they could do for me, and just leave me hanging, without even giving me an idea of what to look at next. The only reason I've been able to get any help was because my wife just happened to stumble on a couple of doctors (who work together) by researching my symptoms online. Luckily, the last two have identified my problem, confirmed the diagnosis, and one of them just operated on my back a week ago. During this year, I wasted time, health, and money on a surgery I didn't need, and which the specialist who performed it SHOULD have known wouldn't help. I can't help but think that he saw an opportunity to do a surgery, covered by my full-blown, "Cadillac" insurance plan, that might have helped, and he took it. Now I've had an experimental surgery (i.e., uncovered by insurance), and two trips to California. I figure I'm running about $30,000 out of pocket on this whole fiasco. The good news is that the surgery seems to have been a success, but I won't know for sure for 3 to 6 months. Maybe even a year. > I can’t count on doctors _at all_ to move the process forward. My feelings directly echo this. No one in this process is responsible for my overall HEALTH. I'm old enough to remember that it didn't feel like this. Your PCP would have been the "general contractor" several decades ago. Now, all anyone cares about is selling me a service, and then getting paid. And my PCP is notorious for trying to upsell me (per the FA) and get me to do tests and labs that I don't need.

cupofpython 5y ago

>I can’t count on doctors _at all_ to move the process forward. This has been my experience as well dealing with fatigue. I was 25 when I finally got diagnosed with sleep apnea, after over a decade of symptoms. How something so common could go unnoticed by the adults and professional doctors in my life astonishes me still today. Eventually, thanks to ego, I questioned the narrative that I was just normal and lazy. Without the internet, I might not have ever learned that sleep studies even exist. I was more than half-asleep for all of my schooling, college, and early professional years. I've spent the last 5+ years trying to catch up.

ClumsyPilot 5y ago
> How something so common could go unnoticed by the adults and professional doctors in my life astonishes me still today. A friend of mine was struggling with a weird disease, 7 years and 5 doctors later he finally found the cause -> vitamin D deficiency.
- cupofpython 5y ago
  ironically my situation was the opposite. My vitamin D was a bit lower than the acceptable range so I kept getting brushed off until I fixed that. It was kind of hard to fix when I was dragging through life by a hazy thread though I can be a PCP check it out - What is the most easily observable "defect" that's tangentially related to your symptoms? What is the most common treatment for that defect? Next patient.
jrockway 5y ago
I think the situation has improved there in the last couple years. I had a friend who I suspected of having sleep apnea. She called her doctor and asked for a sleep study. They gave her a device to wear while sleeping and the diagnosis of sleep apnea came the next day. Getting insurance to approve the CPAP, though... that is still an open problem. Weeks later, no treatment for diagnosed disease.
- avgDev 5y ago

Auracle 5y ago

For anyone reading this, I've found good success in printing out actual studies or other relevant literature and bringing it to the doctor. It lets them know that while you've done your own research, it wasn't stupid YouTube research.

raxxorraxor 5y ago

If you have something exotic you are basically on your own. Maybe you live outside the city where a doctor knows every patient by name and is really invested in research or you find a clinical study that might align with your conditions, but chances for that latter are extremely low.

cm2187 5y ago

Not saying that you are wrong, there are bad doctors like any other profession. But in general, the counterpoint to that view is that medicine is one of the only professions that never industrialised. You have to put a highly trained MD in front of every patient for every problem. It just doesn't scale. And some patients have the expectation that this MD should also cuddle them, provide emotional support and listen to their life. I am glad when I see a doctor for something and I am in and out within 5 minutes, it makes me feel that I resolved my problem without burdening a precious resource.

DrBoring 5y ago

In my experience as a software developer, I've grouped my peers into a few different categories. This is just a rough estimate based a small sample set, there are probably various gradients in-between. 1. Super coders: These are the coders who write the algorithms that pave the way for coders below them. 2. Natural coders: Competent coders who take to the craft easily. Can easily learn new things, but probably won't be designing the next great video codec. (I fall here) 3. Amateur coders: that somehow got hired. These are the coders that you curse because you're always cleaning up after them. ... I have a theory that the same medical professionals have similar categories. This theory was first formed when I once saw a doctor who, on my first visit, regaled me with stories of taking Uber into the city for a night of drinking. I'd put this guy in the lowest category of medical professionals. He's there to make money by providing a service with little regard for the long term outcomes of his patients. There is more to the ranking than his crass unprofessional behavior. Upon leaving the appointment, I was given a card with a request that I rate him on some rate-my-doctor.com ... It had the same slimy feeling as one of those "give us 5 stars" cards found inside the box of many product sold on Amazon.

xzel 5y ago
I totally agree with you but I'm pretty sure you just described the Normal distribution. People need to stop putting certain occupations on a pedestal. I've had good doctors and bad doctors, largely the latter. Tbh, most doctors don't have the time to be good doctors, due to how most hospitals operate, so it's really tough to judge them fairly. Also to add I'm only discussing US hospitals I haven't had enough experience outside the US for any of this to be applicable outside of it. My small amount of experience with Drs in Tokyo and Prague were great.

gravypod 5y ago

To add some more anecdata: I've been going to a local clinic by where I live (a very poor area) for a little while. Some time ago I had a full blood workup on intake and it turned out my liver enzymes were out of range by like 5% of the standard deviation. They were in range for what the NHS said was normal for someone in their 40s and I'm in my early 20s. I took this seriously and made some changes. I went back for a follow up I had scheduled for 6 months later. I met with a different doctor this time and she looked at my charts, asked why I was here, I explained I fasted over night and wanted to take a liver function test and I needed her to order one. She argued that "It's fine, you're not even that over the maximum!" and "Do you feel pain? If not you're fine." From my research there are both completely false statements when it comes to increase in this enzyme at my age range. Everyone said that if they see an increase in 6 months that's a sign of a larger issue and it's worth getting the test since your insurance would cover it (which mine did) just to be safe. After telling her I wasn't leaving until she ordered the test she opened her laptop to enter it into the EMR. I saw her open Google, copy "Hepatic" from "Hepatic Function Test" on my previous labs and then read the popup Google showed me out loud: "Liver.. ok good" and then order the test in the EMR again. Some doctors haven't got a clue. It's unpopular to say because it's a convenient fiction to think you will get good care from any qualified doctor but when one doesn't know what "Hepatic" means then I don't know what to think.

ALittleLight 5y ago

A few years ago I noticed my stool was unusually dark (sorry for too much information). I did some googling and discovered this was an indication of blood in stool. I went to the pharmacy to buy a fecal occult blood test - a strip of paper that you add to the toilet bowl and it changes color if it detects blood in the water. When I got a positive result I retrieved my strip with tweezers and put it in a ziploc bag and went to go see a doctor. The doctor decided this was an ulcer and said the ulcer could be bacterial, viral, or idiopathic (meaning without a cause). His solution was to prescribe an anti-bacterial and a steroid and to take both. I asked if there would be any complications or drawbacks to taking both, and he said there would not. I asked if I should take one first and then the other so I could narrow down whether the ulcer was bacterial or viral. The doctor thought this was a good idea and said I could do it if I wanted. I asked if I should take the medications in any specific order and he said it did not matter. I went home and read up on the two medications he had prescribed. Sure enough, the steroid would make a bacterial infection worse. Following the doctor's advice, without my own research, could have made things worse. Without doing my own diagnosing and testing I would have had a much longer time to treatment too. (Wound up going away with the anti-biotics)

whatshisface 5y ago
If you were on both at once would the antibiotics have stopped the steroids from making it worse?
- ALittleLight 5y ago
  I don't know that. My research didn't turn up anything about taking both at once. I think, either way, it would have been safer to try anti-biotics first then the steroids. It's not like I was suffering from the ulcer, I had time to experiment, so why not go with the simplest and safest treatment route?

awinter-py 5y ago

ugh yes re gatekeeping -- maybe there's an argument for requiring a prescription for some treatments, but at least in the US it's illegal for patients to self-order diagnostic testing. the new york AG sued a lab for doing walk-in blood tests without a prescription 'didn't accept insurance' is interesting -- in the econtalk episode with the surgery center of oklahoma, the guest claims that he's able to offer better medical outcomes by being out of the insurance system, and implies that billing things at a mainstream hospital has become so hard that it consumes more mental cycles than medicine it seems like the medical system as-is isn't the right service for people who are fighting the system to get a diagnosis; I wonder if there's a different model that would work better or tbh a specialized concierge doctor that just prescribes things that you ask for

foobarian 5y ago

It seems that they have very little incentive to take risks/deviate from the common path. Why help an outlier patient, when even if their unusual treatment doesn't do any harm, it could be wrongfully associated with some random bad outcome? With the system set up like this, game theory basically guarantees we end up with the state as OP describes.

Phrodo_00 5y ago

> I can’t count on doctors _at all_ to move the process forward. It’s always me, reading articles on PubMed and coming up with ideas. This seems to be the case with most medicine. Doctors in the US don't seem comfortable making suggestions. I recently got appendicitis and at first they only offered an appendectomy as a thing I could do (or not do). I had to specifically ask for a recommendation to get someone actually recommend a path, and this probably is one of the most routine cases in an ER. Can't imagine having something more complex.

AussieWog93 5y ago

>The rest of the American medical system? Gatekeepers that block access to potential treatment pathways until you can convince them it’s worth a try. It's not just America. We have exactly the same issues here in Australia.

kromem 5y ago

On the other hand, I just had a lengthy conversation with my dad on why he shouldn't drink chlorine dioxide, and that a Bitchute video from a guy who got a "doctor's of philosophy of medicine" from a diploma mill who had a patent application on drinking it to cure COVID, was selling books and lectures on his crockpotery, and had charges brought against him for two deaths resulting from drinking the thing might not be the best authority on the topic. For people that are very good at research, self-advocacy and research is absolutely a night and day difference from just going in to the doctor for 15 minutes and being rushed through the system. If not for that in my own chronic health condition, I'd be on immune suppressants right now vs a much lighter treatment regimen in conjunction with generic/supplements supported in limited academic research abroad (the funding bias in research for patented vs generic/non-patentable treatments is its own topic). But that's not the majority of people, and far too many think that they are capable of "doing their own research" when they aren't equipped to do so at all. Particularly when it comes to medicine, that's a dangerous misconception, and Dunning-Kreuger is actively killing people who can't discern between snake oil and a meta-analysis. So many of the people doctors are dealing with that are Googling ARE idiots who endanger themselves with their 'research.' Which sucks for the people who are actually good researchers and dealing with biases towards self-research. Though in my experience, typically good doctors very quickly realize you're adequate at research and work with you as a treatment partner, and it's the people like my dad who will fight against actual research efforts in a quest for confirmation bias.

daddylongstroke 5y ago
Some things to think about. I personally know of a friend who walked into a Dr. office in the "top hospital" in Chicago, described her symptoms, and the Dr. without making eye contact, or saying anything, pulled out his smartphone, and googled every symptom she described. Then he said something like "lose 15 lbs. and come back if its still an issue". :-P More importantly though, when deferring to "experts" in medical practice, you should ask yourself, "has the amount of money we've spent and 'expert training' these practitioners have gotten, and the 'breakthroughs in medicine' that they claim have occurred over the last 80 years, resulted in a statistically significant and measurable positive patient outcome?" What I'm seeing is, since the advent of hospitalization and deferral to medical 'experts', we've as a society, become much more fragile, non-resilient, addicted, overweight, and unhealthy.

ClumsyPilot 5y ago

When a business personn asks me for a new feature I spend a couple hours discussing their requirements and customer needs. I make sure to ask the right questions and draw out corner cases they haven't thought of. The business person has a bit of training to put forwar their requirements correctly A doctor might spend 5 minutes listening to your symptoms, you have no training on how to recall them correctly or bring up the right ones. Another 5 minutes might be spent discussing treatment. And you life might depend on this

PolygonSheep 5y ago

Litigation/malpractice probably plays a role too. I imagine doctors are under a lot of pressure to do everything by the book. If it works, awesome. If it fails, they can say they followed best practices and it's not their fault. If they deviate for any reason, they do so entirely at their own risk if/when it blows up in their face. It's just not worth it (in the expected value sense) to step out of line.

treeman79 5y ago

Copied from an older post. —— Congratulations, you have earned the achievement “chronic condition”. Your rewards are as follows. You have max exhaustion at all hours of the day! Exercise recovery is bumped from next day to 2 weeks! Your pain level is now on par with dying cancer patients! Everyone now considers you lazy and incompetent! Doctors now blame all symptoms on anxiety! You gain +1 to medical research ability. But -20 to Reputation. You now get spontaneous and useless medical advise from people that believe in essential oil. You are now on timer with your job until sympathy runs out! Disability now can mock you openly as clearly your faking and don’t have a real condition! You are now a burden to your family! +10 sneak score; you quickly learn to hide your suffering! +20 to loneliness! -20 to persuasion! Asking for help gets little from doctor's. +10 Planning! Your kids may be orphans soon, make sure they get taken care of. Read fine print on death benefits. ——- Staying positive when you have a chronic condition is incredibly difficult. Your not going to get through it without losing your mind now and then.