Comment by placardloop

Comment by placardloop 2 days ago

33 replies

My significant other is going through this situation, and in my experience it seems as though most doctors just simply don’t care to actually find a diagnosis (or at least, don’t have the time or motivation to care), combined with a hefty dose of “that’s not my job”. My SO has been to specialist after specialist who spends a grand total of 2 minutes listening to the symptoms, followed by “well let’s do some blood tests and see what they say” (ignoring that the last 5 doctors already did blood tests). And then when the blood tests come back with nothing obvious, the doctor just throws up their hands and says “well I don’t know what to do, you should go see <other specialist>”.

The reason the “family member or friend who knows someone who can recommend a doctor” seems to work well, in my experience, is because that doctor then has some motivation to actually care, as the patient is connected to someone they already know and care about.

Our medical system financially incentivizes doctors to see as many patients as possible, but doesn’t financially incentivize actually making them better. For that, the system just hopes that doctors will care, without giving them the room to do so.

epistasis 2 days ago

Another way to look at it instead of "they don't care" is "they have nothing they can offer."

We have progressed fantastically on the common medical conditions, but once you get into more rare stuff it gets a lot harder. Doctors have huge breadth of knowledge, but the sum of human medical knowledge could never fit into a human brain, even within a specialty, and even then there's so much we are not even close to understanding or knowing.

And for rarer stuff that is just getting discovered and learned about, there will only be a few specialists who are the ones figuring it out. That's why you go to lots of doctors that offer nothing, then a hint directs you to the doctors that are in the cutting edge of expanding knowledge.

Even if we financially incentivized each and every doctor to spend hours or days trying to find out what's going on with a patient that the doctor can't help with their current knowledge, it's quite likely that doctor could never help on the basis of a single patient. Medicine advances through discovery in groups of people and transferring knowledge from the results of one patient to others, incrementally. A single patient is far less likely to lead to advancement than a doctor having a group of people with similar symptoms.

The financial incentive for this discovery comes from research hospitals that collect these difficult cases, and obtain federal research grants from the National Institute of Health that allows them to do research and publish papers and share the knowledge. The proposed budget for the US drastically slashes this, greatly reducing our ability to advance medicine. And in advance of the budget cuts, the NIH is in violation of current contracts stopping payment, resulting in massive waste as research dies on the vine.

So what I'm trying to say is that the logistics of advancing medicine require grouping patients, and the place where that happens is at research hospitals, not at the local community doctor for everyday care. And our society is choosing, consciously or unconsciously, to drastically reduce access to that type of care.

  • dragonwriter 2 days ago

    > We have progressed fantastically on the common medical conditions, but once you get into more rare stuff it gets a lot harder.

    At about 10% of women of reproductive age, endometriosis is way over on the “common medical conditions” side, not the “more rare stuff” side.

    There's a bias here, but its not about how common the disease is, but who it affects and how.

    • epistasis 2 days ago

      I really regret using "common" here, because the issue with endometriosis is the complexity of the disease, lack of understanding, and lack of clinical management tools. Not the rarity.

    • tbrownaw 2 days ago

      > There's a bias here, but its not about how common the disease is, but who it affects and how.

      This worldview requires believing that doctors dgaf about their family members.

      • ipaddr 2 days ago

        Most doctors who do this type of medicine wouldn't work with family members. Not many fathers, uncles would work on their kids, nieces or mothers and not many mothers either. You would go to a different doctor if possible.

        • tbrownaw 2 days ago

          "They don't care because it's doesn't affect them personally" requires "they don't care about other people".

          My general impression from half recalling whatever stories about new medical discoveries, is that the motivation is more often a problem that a family member of the researcher has rather than a problem that the researcher personally has.

  • dinkumthinkum 2 days ago

    While I might be sympathetic to what you’re saying, endometriosis is not a very rare condition.

  • troupo 2 days ago

    > but once you get into more rare stuff it gets a lot harder.

    Endometriosis is not rare. But it's a female disease. You will be shocked to know how many of diseases that women have to deal with are both quite common (some estimate up to 10% of women may have it), and completely ignored by medical community (which is still overwhelmingly male)

    • epistasis 2 days ago

      You are correct, and my language was not very helpful there!

      The article shows that 10% is a low estimate.

      It is not completely ignored, but research is underfunded nearly to the degree that COPD is underfunded.

      I think we need to distinguish two things here too: the bedside manner of doctors and whether they are willing to present the options that could lead to diagnosis, and then the amount of medical research that could give doctors some tools to better manage endometriosis.

    • ipaddr 2 days ago

      For IBS you get similiar treatment male or female. It's about medicine not having answers for treatment and lack of easy testing not gender roles.

      • genocidicbunny 2 days ago

        It is absolutely also about genders too.

        I get a tingle in my balls? Here's an expedited ultrasound that we can do tomorrow. We can get you in for a blood test for cancer markers in two days.

        My whole pelvis hurts when I have my period? Here's a motrin and an ibuprofen. Come back if it doesn't stop bleeding after a few days.

        Like an effervescent abscess, the difference in treatment between males and females remains to this day. It's not even particularly hard to find female doctors that will outright dismiss symptoms in female patients because that's what they were taught.

  • asdf6969 2 days ago

    They genuinely don’t care. Don’t over think it

drewg123 2 days ago

What kind of specialists? An ex of mine had severe endo, and it was finally treated by a reproductive endocrinologist (in Raleigh, NC) after going through many other doctors.

Henchman21 2 days ago

What our "system" seems to actually incentivize is keeping people chronically ill so that they're forced to continually pay for their non-treatment.

It's hard not to be incredibly cynical in the face of things like this. Way more than once have I thought "this is a cruel and unusual punishment" -- wait aren't those prohibited?? Oh right we get around that by making cruelty usual.

  • margalabargala 2 days ago

    I see this view sometimes and it really annoys me.

    The number of doctors and nurses that attempt to keep people chronically ill rather than curing them if possible, is essentially zero. People get into that field frequently because they actually care, and people that actually care are the most likely to not follow a vague profit incentive that actively hurts people.

    Similarly, most medical researchers would love to cure diseases, and actively seek out jobs where they do so and will object if asked to suppress curative research.

    To the extent that what you describe exists, it is limited to MBA people at insurance companies and big pharma determining what gets funded for research. While exceptions always exist, the incidence of that attitude among the people actually doing the work is very close to nil.

    • Henchman21 2 days ago

      I think we agree on this point almost entirely. But let’s not pretend the doctors, nurses, and researchers are running the show. This attitude of mine persists because of the way the insurance companies run the system: profits first, patients last.

      Sorry to annoy you.

      • majormajor 2 days ago

        A chronically ill person is a risk to an insurance company. They could turn into a huge hospital bill for an extended stay any day now. Or, worse, become a permanent disability recipient.

        A healthy person is a huge asset to an insurance company. Collect premiums for decades before they need much of any disbursal! They're still likely to be expensive at end-of-life, but you've profited WAY more from their initial healthy years.

        (This, of course, is why insurance companies want to consider health in setting premiums, and why it's SO IMPORTANT that the government not allow that and keep things group-based. Because then you have the incentive to help the unhealthy people instead of just "milking the unhealthy people.* I pay the same as my coworker for my insurance. The insurance does NOT want my chronic condition to make me much more expensive to them than my coworker. They'd much rather it go away. Sadly, nobody can do that today.)

        What the insurance companies don't* have is the incentive to actually push doctors and facilities to spend more time and money on looking for rare issues for unhealthy people. Because the searching is expensive, and there's a high risk it won't actually find a magic bullet.

        So they'd rather have the median patient go from unhealthy to healthy, but if we want them to invest more in the long tail, it's gonna have to come from regulation.

        And targeted investment in better detection*. But better detection is harder to sell than "expensive treatment drug" so again. Might need to get the state involved.

      • margalabargala 2 days ago

        There are a lot of doctors and researchers running research arms of large, well funded institutions. Sloan Kettering for example.

        I'll grant you that that is a low percentage of the total US medical research spend. But also, most of the world does not have the same profit motive; in most Western countries, a cure is categorically cheaper for everyone than a chronic illness, because healthcare is paid for by taxpayers. And countries besides the US do plenty of medical research.

        If the hypothesis were true that there exist cures to many diseases that simply haven't been explored due to profit motive, then I would expect countries without that profit motive to have a higher proportion of cures among their medical.discoveries than the US. I don't believe that is true though.

        Basically my point is that the effect you mention likely has little actual impact on the larger medical field.

      • BobaFloutist 2 days ago

        There's pretty universally much more demand for doctors than supply. And insurance companies, the other major power that's, to an upsetting degree, "running the show" would love for everyone to be perfectly healthy so they can collect premiums and never pay out.

        • tbrownaw 2 days ago

          > so they can collect premiums and never pay out

          That's not actually a thing. A very high portion of premiums always has to be paid out. Not just because the regulators said so (IIRC the requirement is a 90% or 95% loss ratio?), but because they'd be undercut by a competitor long before they got in regulatory trouble.

    • frereubu 2 days ago

      Taking the strongest plausible interpretation of the comment you're replying to, systems are not the people who work in them. It's perfectly possible for a system to be tuned to something other than pure patient benefit, while the people who work inside that system are trying to bend it towards that.

    • renewiltord 2 days ago

      This is totally untrue. Slow rolling early care to raise total dialysis likelihood was sufficiently widespread. Not the majority of docs but sufficiently large numbers. It is defensible medically to do that because you don’t need to treat something that hasn’t happened yet.

      • margalabargala 2 days ago

        How widespread is "sufficiently"? Especially since you also mention it's a minority? I've not heard of the specific example you mention, do.you have more details?

  • liquidise 2 days ago

    I feel this is more a societal failing than a medical one. Most people don’t want to take better care of themselves: eating better, portion control, more regular exercise, etc. Too hard.

    People want a pill to solve the ailments they have.

    • kjkjadksj 2 days ago

      Exactly why weight loss pills are a multibillion dollar industry today.

      • nradov 2 days ago

        Technically those are mostly weight loss injections now. The pills don't work nearly as well.

  • tekla 2 days ago

    People want medication to solve their problems, not actually try and solve things without paying money for it

  • nradov 2 days ago

    Nonsense. The clinicians working in the healthcare system have zero incentive to keep patients chronically ill. This isn't a matter of keeping patients coming back: most doctors already have more workload than they can even handle.

    Most chronic diseases are primarily caused by lifestyle choices. This is largely outside the scope of medical practice. A doctor can prescribe metformin to treat type-2 diabetes and a statin to reduce cholesterol but they can't force you to clean up your diet and get some exercise.

    https://peterattiamd.com/outlive/