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Comment by jnovek | Hacker News Reader

“ 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.

View on HN

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.

I thought expert systems were supposed to replace diagnosis, like three decades 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.

I only support this if I dont get charged for 2 visits

This seems to make sense to me as a better medical system.

We have the same problem in education; we've stupidly combined certifications (diplomas) with instruction. This is a huge conflict of interest for the schools.

This is a really neat Idea, i never heard of it before

Doctors love to mockingly call this "Doctor Google" and reject anything mildly technical that you read on your own, even if you're just trying to have an open discussion and not push a diagnosis. I think the underlying dynamic is that doctors had one of the early monopolies on "knowledge work" and have never adapted their ways [0]. And so they're not used to having to engage with other's ideas, in stark contrast to the open collaboration we're used to in the engineering/scientific world.

[0] srsly if I'm understanding some recent hospital records correctly, they still mostly work by verbally dictating at subordinates who transcribe for them. And they spend most of that dictation simply reciting the patient's known condition. Compare with programming where the working set is openly displayed on the screen (modulo scrolling), and then our contribution is only that of making changes.

The interesting part about this is that you'll also likely see a NP or physician's assistant, who, at best, "google" (uptodate) your symptoms if the case isn't obvious. Sometimes doctors will do the intake appointment and fail to tell you that any follow-ups are done with their "trained" NP.

And then be billed 400-800$. Such an incredible system!

I also gave up going to physicians with a chronic illness. They're in and out in five minutes, and just ramble off the top two treatments from uptodate. If it's a surgeon, they'll try to sell you on surgery or a diagnostic procedure to "re-validate" the diagnosis (conveniently to generate a trivial 10K for the hospital in a few hours). If you want anything beyond that or to have a discussion, good luck.

Yep, same.

I only go to doctors for injuries or other clear, specific problems.

I was misdiagnosed with Bipolar Disorder for 30 years. Turns out it was Neuropsychiatric Lupus. Despite all my pleading to them to look further they never did. I had to teach myself biology and genetics while I was on disability. They missed all the common signs of Lupus; my skin, bad kidneys, etc.

I am afraid all this technology is taking away all of our wisdom. Too easy to know things, very hard to understand them.

My dad almost died in the 90s because they couldn't diagnose his lupus.

Sorry. Yeah, my mother suffered her whole life with it and never new it. She was in a wheelchair for the last 10 years of her life with all kinds of issues. It was our kidney issues that tipped me off. That is the reason I went into the genetics, because she, and several other in my family have the same issues.

If anyone is interested, it seems it is partly (mostly?) caused by a Purine nucleoside phosphorylase deficiency. (PNP gene)

https://pubmed.ncbi.nlm.nih.gov/28859258/

Lupus is really hard to diagnose. There's a reason that ends up being the diagnosis on pretty much every episode of House M.D.

Doctors generally see 6 patients an hour, and have 5-7 minutes of paperwork per patient. The remaining 3 minutes gives enough time to diagnose the obvious, but not much else.

It is not hard to diagnose once you eventually get to a person that can diagnose it. You said it yourself. It is not about difficultly, but time spent with the patient.

But I literally showed my doctor the cutaneous lupus in my ear and she said "Oh, some people just get gunk in their ears" and would not send me to a rheumatologist.

The slow diagnosis is because the specialists are so reluctant to see people. Right now I am on a six month wait to see a rheumatologist. Why? Capitalism.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7255118/

There are too many patients and not enough doctors. This isn't caused by capitalism, capitalism doesn't limit the # of doctors. Becoming socialist doesn't magically allow doctors to see patients for twice as long. If we had socialism more people could afford doctors(a good thing!) but it would make this specific problem worse, because there would be more patients. This is caused by the AMA lobbying to limit the supply of doctors in order to drive up salaries.

It's why we have this.

United States – $316,000 Germany – $183,000 United Kingdom – $138,000 France – $98,000 Italy – $70,000 Spain – $57,000 Brazil – $47,000 Mexico – $12,000

> This is caused by the AMA lobbying to limit the supply of doctors in order to drive up salaries.

This. This is the problem - not the vague spectre of "capitalism" being waved around.

Since when do salaries have nothing to do with capitalism?

The Soviet Union had wages to, and far worse problems with shortages then capitalistic countries have ever had.

Yes, but not in general shortages of doctors. It's a totally different problem, so this isn't really a helpful way to look at it. After all, if there's a shortage of cabbages, it doesn't mean the remaining cabbages benefit and can lobby to keep it that way!

Cabbage farmers can, though.

Yes, but when that sort of thing happens in commodities it's an illegal cartel, whereas when it happens with jobs it's responsible self-regulation by a professional association.

The presumption is that under a "free market" the demand would drive more production - more doctors. But that the rules of the current system artificially restrict the supply of doctors. Some of that we want - credentials clearly serve a purpose - yet are the rules more restrictive than they should be? Should there be more residencies? Should we have more "lower-level" providers like nurse-practitioners, PAs or pharmacists that can prescribe? There is limited ability for the market to innovate in such a regulated environment.

Since people refuse to see regulatory capture as an unavoidable feature of capitalism.

Because it's factually not. At least, unless you define "capitalism" in a specific twisted way that includes "regulatory capture". Which I suppose a lot of socialists do...

It’s funny you say this has nothing to do with capitalism but all the countries you listed have largely socialized medicine.

Once capital gets power it uses a government to enforce that power.

Roughly a third of our healthcare spending is socialized medicine, and Medicare and Medicaid have the same issues we do.

1/3 < 3/3.

We do not have anything close to socialized medicine.

I don't understand what you mean, not being universal does not have any bearing on that. The care is paid out of taxes.

I am on Medicare. Because it is not universal means it is only partly socialized and still operating inside of a non-socialized system. Why does this matter? I cannot get any doctor I want, only the ones taking Medicare, which are fewer and fewer, because they would rather only take people on private insurance.

In France for example you can walk into any doctor and they will see you.

I live in a country with (mostly) free health care and we have 6-month wait lists too. Same shit in the UK, who invented the NHS.

Please stop blaming every problem on your ideological pet peeve. Society is too complex for every single issue to be caused by capitalism, financialisation, the patriarchy or systemic racism.

Then that’s not capitalism.

Veterinary care would be much closer to the model of a capitalistic solution.

The book M.D.: Doctors Talk About Themselves actually interviews someone who discusses this problem, and inadvertently illustrates a problem American policy ran into.

The interviewee says that the Reagan administration tried to drive down the cost of health care by increasing (as opposed to, say, lifting) the quota on production of doctors, with the idea in mind that more supply of doctors would drive down costs. And he goes on to say that the idea backfired by raising medical costs.

In the interviewee's mind, the problem is that doctors can "make their own work" -- with more doctors around, more medical care can be performed than was possible with fewer doctors, and so the cost of health care went up instead of down, making the policy a mistake. That is the beginning and end of his analysis.

No one asks whether the cost of particular treatments went up or down. If total national spending on health care went up, the policy is supposed to have been a failure.

Lupus is a broad category of auto-immune diseases. Some are easier to diagnose than others. It sounds like yours was one of the easier ones. Easier, but not easy! Many Lupus diagnoses rely on differential diagnosis. AKA eliminate every other possible diagnosis and if they all are negative it must be lupus.

> The slow diagnosis is because the specialists are so reluctant to see people. Right now I am on a six month wait to see a rheumatologist. Why? Capitalism.

This remark seems somewhat lacking in rigor. I know bagging on capitalism is a common reflex, particularly in medicine, but something more is almost certainly going on.

The default thought process for a retailer is to move units. A lawyer wants to rack up billable hours. A subscription service wants more subscriptions.

So why would a specialist look for fewer cases? There is almost certainly a perverse incentive involved, because a competitive market would usually prompt a service provider to accept business and grow with demand.

Specialists are hard to get a face-to-face with even with socialized medicine (personal anecdote from Sweden). I assume that one thing that transcends national borders is that unless your symptoms suggest anything life-threatening care will be administered in accordance with heuristics. The most probable diagnosis is set, and it is assumed that a patient will return if things does not improve.

However, failing to communicate to a patient that a diagnosis is provisional might serve to undermine their faith in the healthcare system leading to periods of fatigue wherein one doesn't have the self-efficacy to continue seeking care if things haven't improved even if quality of life is severely impacted.

From my limited understanding of the US healthcare system I'd imagine you don't want an excess of cases because each case

1. Is a responsibility, and thus a liability, and 2. every patient your staff needs to accommodate is draining (risk of overwork).

If that would apply to a country with socialized medicine I imagine that Item 1. receives significantly less consideration but that Item 2. is still very much considered. If a unit isn't a first-line care-provider they can in theory be a bit more guarded about who they receive, while first-line just has to bear whatever comes through the doors.

I feel as if I'm shifting to a different point of discussion but I still struggle not to mention the fact that a specialist may not be readily at hand depending on what city you are in.

Specialists are called that for a reason. They are not general practitioners and their time is extremely valuable. Access to them needs to be managed so that they do not waste their time on people who do not need their specialty.

The way it's supposed to work is that the general practitioner rules out a bunch of stuff, and then starts referring to specialists who can diagnose/treat the rare things.

In practice it's not quite perfect, but it's hard for me to think of a better way to deal with it.

> The way it's supposed to work is that the general practitioner rules out a bunch of stuff, and then starts referring to specialists who can diagnose/treat the rare things.

You missed a whole bunch in that progression. You forgot the insurance companies for one thing.

And you are wrong about the diagnosis process for Lupus. My Primary Care gave me the worst test for diagnosis ANA levels for Lupus. It came up negative. Therefore, I could not see a rheumatologist even though I had documented (MRI) spinal arthritis, kidney problems, and all the other symptoms.

When I found out it was a bad test I demanded they did the correct one it came up positive. So you see, when they do not know what is going on, the give up. They do not dig deeper. The process is a failure for people with chronic illnesses.

The better way to deal with it is to have fewer specialist, get rid of insurance companies, and just have more doctors that can spend more time with their patients and learn more in the process. Primary care doctors need to know more and investigate more.

And the only reason specialists time is extremely valuable is because they make sure there are not a lot of them.

I probably cost insurance company 300-500,000 while figuring out what was wrong with me.

A full round of blood tests by a few specialist would’ve saved everyone involved a lot of money.

Wasn’t even a super rare thing. Just 2 somewhat common conditions. One of which is known for being dismissed as anxiety.

For the life of me I do not understand why they just do not throw a bunch of tests at people with chronic conditions. They all say they do not know what is wrong with us bu they never do any testing, and the outcome is the same every time; patients suffer and costs are higher.

Many tests are not 100% accurate, nor do they necessarily pinpoint the problem (often they just rule something out).

There's no magic doctor who would be a flawless diagnostician if he just had more time to spend with the patient and less interference by the insurance companies. And if he did spend hours and hours on your case, and run all the tests, that would be hours he's not spending helping other people and delays in other people's labwork.

Medicine is imperfect, and diagnosis is based in large part on probabilities. Doctors do what their education and experience tells the is most likely to help. Sometimes they are wrong, because people are different, and some doctors aren't as good as others. Sorry your chronic condition was misdiagnosed. It sucks. There's no magic answer.

I had one that was abnormal. They kept telling me to ignore. I had to push really hard for the follow up test. That one was abnormal. I was still told to ignore it. More pushing. The next obvious test to run was negative. Did a bunch of research and found out there was another related condition. I had every symptom. Pushed really hard. Tons of positive tests for that one. They still told me ignore results.

A hard fight later I started treatment. Dramatic and immediate health improvement. Some of my doctors still refuse to believe I have condition. Process Took 3 years. The average time for diagnosis is 7 years. Had about 30 doctors during this time frame.

Not even a rare condition.

> I am on a six month wait to see a rheumatologist. Why? Capitalism.

Consider that the AMA is a monopoly enshrined by the government, and their purpose is to limit the supply of doctors, which they do by limiting the seats in medical schools.

It's not capitalism.

See Competition & Monopoly in Medical Care by Frech.

https://www.amazon.com/Competition-Monopoly-Medical-Care-Fre...

It's regulatory capture, which i'd argue could be part of any economic system, but is deeply embedded in our current "capitalist" system. The AMA has put in place rules to protect itself at the expense of society as a whole.

> Right now I am on a six month wait to see a rheumatologist. Why? Capitalism.

Typically that's anti-capitalist: there are very strong government and regulatory limits on who can perform the services, and for self-serving reasons, they maintain shortages of supply. The free-market capitalist solution would be for prices to rise to a point where supply and demand are balanced, either by supply increasing (people switching fields), or reduced demand from prices rising.

> for prices to rise to a point where supply and demand are balanced

Is there a limit to the amount of money you would pay to save your life? Is there a predatry loan you wouldn't take to pay for life-saving surgery for your child?

Has this ever been demonstrated to work in healthcare in the real world, outside free-market fantasy land?

Yes, in the US before the government took over health care.

BTW, no government is going to spend unlimited sums to save your life.

> Yes, in the US before the government took over health care.

When did that happen? If you are thinking Obama care, uhm, no.

> BTW, no government is going to spend unlimited sums to save your life.

You are missing the point. Supply and demand curves break when it comes to life and death matters. That is why prices should not be dictated by a free market. Well, I guess that is fine if you are a sociopath.

> When did that happen?

Not all at once, but decision by decision. One big change was when the AMA was granted a monopoly over the education of doctors. Then there was when companies got around wage controls in WW2 by tying health insurance to employment. Then in the 1960s there was enormous expansion of the FDA, and then Medicare and Medicaid. Then there were laws that required emergency rooms to treat people for free.

All these measures sound great, but they completely mess with the structure of how markets work. And so we have the very expensive, and often dysfunctional, system today.

> That is why prices should not be dictated by a free market.

The free market doesn't dictate prices. Governments dictate prices, which always leads to shortages.

> I guess that is fine if you are a sociopath.

If you have a case, you should be able to make it without insults.

Present your case - show that it worked well before government.

The US had the longest life expectancy in the world.

Might wanna go over your history again.

https://youtube.com/watch?v=3qpLVTbVHnU&t=34s

The people who tend to be the most ardent defenders of private medical care are usually the same people who have had the fewest reasons to actually depend on it. They're also the same people that declare the United States the greatest country in the world despite having never lived anywhere else but the lower 48.

The limit is approximately what you would be capable of paying. Putting value on life is a common practice, particularly in single-payer healthcare, mostly relevant to certain drugs.

There are, of course, problems with a system like this. "I would pay literally everything to not die, but can't find treatment" is just not one (assuming certain values of everything), because people will take your money. Problems are things like rich people getting better treatment (happens just about no matter what, but we'd rather pretend otherwise), and evaluating treatment performance as a customer/patient (a reason for most supply restrictions.)

I live in a country with private Healthcare and I could call and book an appointment with any kind of specialist anywhere from a day to 6 months. The reason it takes longer is usually because they're fully booked due to demand. And when I get an appointment, I can sit in that office for an hour asking anything I want. And my medical aid will pay for it. That is capitalism.

> And my medical aid will pay for it. That is capitalism.

No, that is socialism inside capitalism. Let me explain. I assume by "medical aid" you mean insurance, right? What is insurance? It is a bunch of people pooling their money so they can reduce risk and pay for each others health care.

Capice?

Difference being I get to pick in one and in the other I have no choice. Also the medical aid or insurance makes a profit, yet more capitalism.

Either way, we're talking passed each other because we have different definitions.

You're blaming Capitalism, it isn't great, but the problem is that in the United States healthcare system you have Capitalism without Free Market, you have "crony"/rent-seeking/regulatory-capture Capitalism.

You can get a rheumatologist TODAY if you're willing to pay (quite a bit) more (at least here in Uruguay). THAT is free-market capitalism.

If you don't have money, you'll have to wait 2-3 months (quite a lot less than what you're saying), and you'll have it for free (here). That's socialism.

In crony capitalism, you have the worst of both worlds...

Your fear is as old as time. The act of writing was considered a threat to human memory capacity and therefore wisdom too.

This argument keeps being thrown around but it's pretty clear to me that this time it's actually different. Every new attention-grabbing invention is more potent than the last, and the Internet just might have crossed a threshold where it can actually break us on a large scale.

You are assuming I believe that writing was not a threat as well, albeit a slower one. But here we are, because of all that reading and writing.

Did you see this: https://www.crick.ac.uk/news/2022-04-27_scientists-find-a-ge...

i never go under without someone there with me. My father was almost killed twice be incompetent nurses double dosing IVs and other things. My mother, an RN herself, watched him like a hawk every time he was in the hospital to keep the staff from killing him.

Another anecdote, my sister worked at the front desk in some department ( she was an admin and not a nurse) and a patient coded but came back by themselves. Only afterwards did the nurses realize they were marked "do not resucicate" by mistake!

i do not trust hospitals at all.

Feel this.

Spent $500 for a pointless MRI.

I have some specific domain knowledge on my injury (very sport specific) but obviously have not spent 10+ years in school studying hand surgery.

But I did read and send AND tell/ask in my appoint real specifically relevant med publications saying the only way to see what I wanted was an ultra sound under stress.

My PT also said this. But not a 'real md.'

So I had to pay and sit through an uncomfortable MRI for nothing. And never got the ultrasound. Should have just said no thanks.

To be fair, the vast majority of patients they see who do bring in their own sources are probably the kooks. Just look at the state of national discourse on any topic related to science. The number of people within the intersect of the venn diagram of "able to interperate the relevant literature", "has time to interperate the relevant literature", and "doesnt trust the doctors ability to interpretate the relevant literature" has to be remarkably small.

A hospital isn't the place to be unless you have a specific, acute need to be there.

They're looking to stabilize you and get you able to survive outside the hospital, not to solve a mystery.

Great place to go if you need it, though. Got internal bleeding? Get that taken care of. The risk of a debilitating or fatal hospital error isn't that high, so absolutely go when the risk of not going is high.

TV, though, has trained us to expect to get everything figured out and root causes solved too. Unfortunately, that's just not realistic even if many of the complaints in this thread were solved. There are a lot of nasty rare diseases and conditions, and strange manifestations of conditions, that will still be missed if they have 60 minutes with you instead of 8.

You should also realize that doctor quality varies as much as any other skill. SHOP AROUND. I've had better luck with second, third opinions than I have trying to pester an original doctor into changing their mind. There are doctors out there who appreciate it if you bring up a written self-history of the condition, the strange aspects or other things that may or may not be related, what has or hasn't worked so far, etc.

> 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.

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?

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.

> You get what you pay for.

But you don't... that's the whole problem with the American Healthcare industry!

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.

At least with socialist medicine doctors will gaslight you for free.

If you go to the Mayo Clinic in Minnesota you'll see people from all over the world for a reason. It feels like the UN, where everyone has some sort of debilitating disease.

They have a system where you get evaluated by a general practitioner (or someone more relevant), and then they schedule you to see however many specialists you might need to see - all within a day or two.

It's not perfect, and I've found it's still hard to get them to drill deep on anything not life threatening or obviously testable. That said, I very much doubt that system exists anywhere with socialized medicine. You don't need a referral or anything else to go. You just call and make an appointment.

I'll second the Mayo Clinic. I've (unfortunately) spent way too much time there, and it just can't be beat. I wish every hospital/doctor/system worked like this place. I doubt that's even possible, anywhere, but from my experience, it's how medicine should work.

I recently had to make an emergency visit to a hospital in a major city, with a really weird presentation.

Within 45 minutes of arrival they had figured out what was immediately wrong and had me hooked up to an IV drip of stuff to fix it. An hour later, a specialist for my issue came and talked to me about the problem and had an idea for a root cause. I was held overnight for observation and had several more tests run; by the time I left the next morning I had a root-cause diagnosis and a prescription to fix it.

"IV drip" - that rang a bell. 25 years ago I was admitted to a hospital with severe abdominal pain. They had a surgeon who was preparing me, mentally, for a temporary colostomy. Fortunately, that IV drip fixed me up within half an hour.

Those antibiotics, man. They work.

So tired of these "European" comments feigning cluelessness to try to feel above others. There is huge variety in healthcare quality across EU countries (waiting lists are years long in my country) and no one can speak of Europe as a monolith and make much sense. People in my (EU) country who have serious illnesses often seek to go to the US for treatment because they have facilities and doctors that specialise in their illness and don't have a hope of survival otherwise.

I see these comments all the time on Reddit and HN but never see the reverse from US posters. They just come across as insecure and snooty.

I'm reminded of that Simpsons episode (can't find it on YouTube easily) where they temporarily have to take in boarders: backpackers and so forth.

Then the financial problem is fixed, and Homer carries one of them, all the while spouting about the European health system, to the garbage can. He says "Time to take out the Eurotrash."

I think it depends on the context of the treatment and how specialized it needs to be. For example, I've had relatives from the U.S. who have gotten dental work done in Croatia because its cheap enough to the point where they can buy a transatlantic flight and spend some time visiting family members along with getting the root canal and crown done. A lot of people in southern California also opt to drive to Tijuana for dental work or other procedures. If its not some cutting edge thing or world renown surgeon, there is no point to paying the costs associated with a lot of treatment in the U.S. at least. For some stuff, yeah, the U.S. is best in class; Saudi princes fly out to Cleveland to get their heart work done.

Sometimes that can be a good idea. But many times, you are also getting riskier, out of date treatment for less. For example, root canals and crowns are kind of the cheaper and less effective way to treat a bad tooth. The gold standard is usually extraction and a new implant.

And considering that you can find a dentist to do a root canal for $300 without too much trouble, I'm surprised anyone would be able to fly to Croatia and get treated for that little.

I think actually it was implants that were done which my dentist quotes me $1600 for in the US

Yes, I have heard of people traveling for implants. But if they travel once and are done, then they are going to cheap route there as well. You can get all in one implants, and they are cheaper, even here in the US. But the kind of implants you really should get are the type that require placing a base first and then wait a few months for them to heal and set before installing the posts and permanents.

From my experience, other countries are even worse.

I'm transgender, and everything the top-level poster said about incompetent doctors, gatekeeping, and having to read literature and teach yourself about your own medical condition absolutely 100% applies to me and nearly every other trans person I've talked to (I remember printing out the Endocrine Society guidelines and taking a highlighter to them in order to convince a doctor that what I'm asking for is standard practice). I also have friends who have other chronic medical conditions, and their experience with doctors is pretty much the same as my experience and the experiences of other trans people.

And everything I've heard from people in Europe is that over there, it's even worse. At least in the US it's possible to doctor-shop and find someone who knows what they're doing—or who at the very least is willing to listen—but in European countries with single-payer healthcare you are entirely at the mercy of whatever doctor gets assigned to your case (yes, this isn't as bad in multi-payer countries such as France as it is in single-payer countries like the Nordics). And in some cases, the barriers aren't even the competencies of your individual doctors but institutional requirements doctors are legally required to follow even if an individual doctor is competent. Mind you, there are some exceptions: in parts of Spain and in much of Southeast Asia, for example, a good amount of medications that are Rx-only in most other countries are available over-the-counter, so at least you can self-med if you've put in the exhausting effort to research your own condition and figure out what you need (and even then, good luck getting blood tests to confirm your dosage is appropriate).

This isn't an endorsement of the US healthcare system, just an acknowledgement that the shit sandwich offered in the US has slightly less fecal content than the shit sandwiches offered in many other countries.

In my experience the quality varies wildly, but every doctor has a base level of knowledge that is far deeper than a layperson. The quality of that knowledge is usually very high, and seems to be pretty well retained by most doctors I've met.

The quality of the actual doctor varies on whether the doctor is a lifelong learner, a deep thinker, a good listener, is good at extracting information from people who are bad at introspecting how they feel, and communicating with people whose language skills and mental capacity are far below or above their own. They also leave out their personal biases about "what" the person they're treating might be (drug seeker, hypochondriac, malingerer, etc.).

If you visit a doctor and they don't have the ability or time to execute those non-medical training qualities, then you get a bad doctor.

The main issue is that the good doctors usually go to desirable places to live. This is often not in rural or even suburban areas of the country, and that's typically where the bad stories come from (adjusted for population density anyway - lots of stories from cities too but there are more people in cities).

Most have knowledge of what they studied in college and what worked over the years and by worked they mean did not get sued, made the most money on and worked quickly.

They are not paid by outcome they are paid by referrals, tests, drugs sold and consulting

> 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

I am an American who has lived in several countries and had experience several medical systems.

The US has the best care… if you have access to it. This access can be limited by geography, insurance, money, awareness of the specific doctor, etc.

In a random provincial area with no university medical school nearby, the treatment will often be quite sketchy.

In other countries I’ve lived in, the best medical care was still in the large cities, but the standard in provincial areas was to a much higher standard (imho) than in provincial areas in the US.

This is also Canada with even more socialized medicine compared to Europe.

The Canadian system (well the one in Québec anyway, each province manages it's own system so I cannot tell about the other province. Hell, I cannot even tell about the one in other administrative regions inside Québec) has a big luck component.

If your lucky enough to have an accessible primary care physician who personally knows specialist and lives where there is a University hospital center, the system is awesome. If you don't, the system appears to be a special kind of administrative hell.

I took that comment to mean they had specific treatments in mind they wanted to try, and had difficulty convincing docs to write the Rx.

Unfortunately the median doctor is busy treating the median human.

> 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.

Are we talking about doctors, not nurse practitioners? It's hard to understand how a doctor with 4 years of medical school and 3-7 years of residency would have a "very narrow understanding" of the human body.

Also, my experience has been that I have always been referred to a specialist when there was any uncertainty about diagnosis or treatment. My trouble has come from them not following up when an RX is denied by insurance, and making it difficult to schedule a doctor's appointment due to not being able to transfer my previous information.

Doctors are T-shaped [0] - a GP knows a little about a lot and most have an area of interest or two that they're really well-versed in. There's just too much complexity, even within a single system, to be an up-to-date expert on everything.

For instance I have an endocrinologist (at Stanford, not to name drop but to signal this person is really good even among doctors) who only deals with thyroid. I naively figured that an endocrinologist would deal with all kinds of hormone issues but no, she's thyroid and thyroid only -- she has a colleague for testosterone, another for diabetes, etc etc.

I don't know that I'd say GPs "don't know" when to refer you; GPs are gatekeepers who will try conventional solutions to conventional problems and generally unless you push won't often suggest going deeper with a specialist. It's not that they don't know to refer you, it's that they're Level 1 Tech Support for the body and often times unless you make a stink they won't connect you to Level 2.

[0] https://en.wikipedia.org/wiki/T-shaped_skills

Let me give you my own example:

I suffer from pretty debilitating fatigue. It started when I was 13 or so, which was also a few months after I suffered a bad concussion. I have low testosterone, and treating that helps some. Autoimmune diseases run in my family; my father has lupus, his siblings all have something, and I have a small patch of psoriasis on my head (to which my doctor said "huh.."). My white blood cell count is always moderately low, even after an infection. I get sick extremely easily and stay sick longer than other people. I frequently get chills in my limbs like a person does when they're sick, though the testosterone helps. The chills are a sure thing when I don't get enough sleep. I get cluster headaches, and recently I started getting really frequent eye twitches leading up to when the cluster of headaches start.

Who should I see to try and figure out the root cause of the fatigue? An endocrinologist? Urologist? Sleep doctor? Neurologist? Immunologist? Rheumatologist?

It's hard to know what's relevant to the fatigue. When I was first treated they simply put me on antidepressants. After giving up on those, years later I did some research and had to practically beg just to have my testosterone levels checked along with some other things that were fine.

The average PCP is usually also an internist, which is just a fancy term for someone who knows just enough to be able to send you to the right specialists. And since in the US many specialists require a referral, that's all most PCPs are good for.

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.

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.

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.

Everyone's using that word in this thread: research. Watching a bunch of YouTube videos is not research. Browsing medical web sites and choosing "treatments" that are cleverly and subtly marketed to you is not research. Matching your symptoms with a TV ad is not research. We saw what two years of "dO yOuR oWn ReSeArCh!" left us with during a deadly pandemic.

We're all dunking on doctors in this thread, but look at it from their perspective: They're probably sick and tired of patients coming in to their office saying "The TV told me: Ask your doctor about Provalanix!" And patients who googled "How to get your doctor to proscribe SSRI medication". And patients who insist they should go with their aunt's Healing Crystal Therapy. And patients who asked HN for medical advice[1] !! If you want to really do research, go get a medical degree and then do actual research in an actual academic institution.

Yes, have a discussion with your doctor. Yes, ask him or her if you have concerns. Maybe even get a second opinion (from another real doctor). But don't think your keyboard is going to bring you to The Truth That Doctors Dont Want You To Know.

1: https://news.ycombinator.com/item?id=31098263

EDIT: Right, the comment is not directed in particular towards its immediate parent, more in general at the entire thread.

Maybe you should reply to those comments instead. I mentioned:

- reading medical research papers

- bringing detailed information about your symptoms

- mentioning things you ruled out and things you've tried

- having a good understanding of your medical history

I didn't mention ads on tv, youtube videos or HN comments. Perhaps you should reserve your outrage for the proper place.

The internet with the latest and most information available to mankind can be ignored?

If someone gets information from video format they should be ignored?

If someone came in and wanted to have a conversation about a medical product they recently heard about they shouldn't go to their doctor with questions?

Sounds like someone is close to retirement or leaving the field with that attitude. Those are all valid concerns the general public may have. That's your job as a gp (to schedule appointments while patients tell you things you suggest your ideas).

Who said anything about YouTube or TV ads?

PubMed is a great resource. Of course, it takes a lot of effort to really get something useful from those papers, since you need to try to understand the experiment they did, and not just read the conclusion (scientists have biases as well, and will often read what they want into the results).

But depending on how bad your condition is, it could absolutely be worth the time.

> But don't think your keyboard is going to bring you to The Truth That Doctors Dont Want You To Know.

Neither do I. I expect instead it might bring you to The Truth That Doctors Don't Know.

It easier to judge if someone sings good than to sing your self. I get your point.

Sure, but if a professional breaks your car or house irreparably then they have insurance to buy you something equivalent or better.

If a doctor breaks your body irreparably, it would seem there's a high probability that you have no recourse other than in rare situations you might get a settlement for some cash. Cash that won't fix your problem.

My main point is that the risks aren't comparable at all.

> 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.

My experience with "experts" has been almost universally underwhelming. The only notable exceptions I've had is with a couple of veterinarians.

> being an active participant in your treatment is a great option.

It's not a great but a necessary option, unfortunately.

Better would be if they gave you a % of their salary in that case.

Exactly. Your health is too important to be left to the doctors.

>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.

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.

>I had a friend who I suspected of having sleep apnea. She called her doctor and asked for a sleep study

It doesnt sound like the situation has improved. Without a friend like you, would she have received treatment?

I think the community has gotten better at addressing the undiagnosed sleep apnea epidemic. When I needed help, there were some discussions about it on forums that I could find with the right search terms. Now, it's become much more common knowledge on the internet that people can spot it in others. which is fantastic.

The Doctors still seem to suck at it. For starters, fatigue is possibly the single most common symptom of disease - and is not something proactively asked about by doctors (in my experience). Every doctor at every check in should be asking "How tired have you been?". The fact that you can notice apnea in your friend before trained professionals even suspect to ask about it is the problem.

And the bigger problem is that even if we address this for apnea, how are we to know how many other issues are going around waiting for the patients to bring it up themselves? I certainly no longer trust that proactive diagnostic due diligence is being done on anything other than blood test result levels.

Doctors rely on patient complaints to govern their behavior. full stop. Check-ins and physicals are way more superficial than most patients understand, imo. Still very helpful, but not nearly enough

Yeah, you're right that doctors kind of missed this. Sometimes I wonder how many questions they ask (depression is what she was being treated for with little success) and how much is volunteered.

I happen to enjoy reading NTSB accident reports in my spare time, and they're always sleep apnea, so it was at the top of mind when I heard things like "headache every morning" and "I randomly fall asleep on my couch". I didn't go to medical school so I'm not sure if those are anxiety/depression symptoms, but a sleep study sounded like it wouldn't hurt. You're absolutely right that doctors should at least be asking these questions ("how tired are you", there is even a scale with more specific questions).

I'm not sure what your friends financial situation is but maybe try to collect some money for her and buy one? I googled that the average cost is just under $1k for a CPAP machine. If it could change her life then maybe should could even pay it back one day.

I second this. Absolutely pay out of pocket if insurance drags their feet. I spent $5k on a mouthpiece for my treatment and would do it again.

It is far from an ideal solution, but in the 3 months it takes insurance to get their shit together - your friend could have the energy to work a side job to pay off whatever it costs and just be generally happier overall

OK good advice, did not know that was an option.

note out of pocket doesnt mean independently - definitely still have a professional approve the purchase decision in case something about the configuration needs to be tailored specifically for your friend

in my case, i needed to see an orthodontist every 2 weeks to have the mouth piece adjusted. I am not sure how CPAP works to say if it is safe to "plug and play out of the box" so-to-speak

> 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.

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.

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.

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.

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.

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.

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.

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.

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.

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)

If you were on both at once would the antibiotics have stopped the steroids from making it worse?

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?

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

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.

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.

LabCorp and Quest both have their own products for this, too:

https://www.ondemand.labcorp.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.

Does anyone know of EU based alternatives to the above?

Yes, social democracy and the welfare state.

This isn't a helpful answer.

What do you mean? There are always private places where to get tests done. Synlab is one of the biggest in Europe. Or you mean to take them at home?

Labcorp is fantastic. I do my own yearly checkups through them. You can pay 100-200$ and get a comprehensive panel done on you even checking your testosterone or estrogen levels. You can pay a few bucks and have a doc review your results too or you can give them to a teledoc to review that most insurance providers have.

I hate going to the doctor's office to have them order a panel so that I can go to a labcorp and have the doc call me and say everything is good. It's all free but my time isn't.

Going directly to labcorp bypasses everything and they give me the results to review myself.

I hear you can get a good deal on "Edison" branded blood test machines. Questionable reliability though.

Yes but I heard they were invented by a genius so that's something!

The gatekeeping these incompetent doctors do is infuriating. If I want a random blood test, why do I need to pay a doctor for to order the test from the third party lab. They add nothing to the process except frustration and expense.

The cost and bureaucracy required to get one working will probably kill this idea. Those machines require consumables to run the tests, as well as for calibration and QA. The vendor might be willing to sell you the supplies and send a technician to get the machine set up to run a valid test, but it won’t be cheap, and they might be unwilling if it’s some guy trying to run the machine in his garage rather than a medical facility. Beyond that, there is a reason that the machine is on eBay and not being sold or donated. It could be obsolete and the supplies unobtainable, or simply beyond economic repair.

From my experience, in most states you can order whatever tests you want from Private MD Labs and just walk into any LabCorp location and get your blood taken and a PDF of your results emailed to you within 24 hours.

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.

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.

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.

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.

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.

> 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.

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

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

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).

Well theres the hippocratic oath, but maybe thats little comfort.

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.

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.

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.

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.

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.

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.

>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.

> 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

> 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?

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.

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