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 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.
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.
> 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.
> 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.
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.
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.
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.
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
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.
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.
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...
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!
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.
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.
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.
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.
> 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?
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.)
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.
> 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.
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.
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...
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.
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)
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.
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.
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!
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.
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.
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.
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.
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.