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I've always looked at western medicine as if it was the best car mechanic you can hire, just for your body. If your problem is mechanical, they can solve it. Surgical techniques are amazing. Breakdowns in known processes can be fixed.

But if the problem doesn't fit those known processes, isn't mechanical, and you are relying on doctor for real troubleshooting of problems, that is where it falls short. You can fall into the weird gap of talking to different specialists, trying to find someone who can pinpoint what is wrong. You try different treatments, you see what works. Sometimes you solve problems, sometimes you end up living your whole life managing symptoms.

And that isn't all bad - better to manage symptoms than to live in misery, or not to live. But the word 'over-rated' is quite accurate. It isn't useless, it just is over-rated.

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> But if the problem doesn't fit those known processes, isn't mechanical, and you are relying on doctor for real troubleshooting of problems, that is where it falls short.

I mean, you're not wrong, but...

No one pays docs to do this. The overpriced insurance that's squeezing you dry pays the doc peanuts for his time on your case. Most docs get allotted something like 15 minutes, all-in, per patient: see you, talk to you, examine you, write up their notes, send out their scripts and billing. If you're a really well paid specialist and don't mind not maximizing your income, call it 30 minutes. This has gotten worse with the rise of EMRs, because they're slow as hell. They have a UI designed by an insurance company billing agent. It's terrible.

And being the guy that spends more time is just a matter of pride/ego. I know an amazing doc who spent 40 hours going through boxes of old records on a patient. Figured out what years of previous docs hadn't, and solved - solved! - the lady's problem. He got paid 350$. Less than my niece makes per-hour selling iphone cases at the mall. You can't keep a practice open that way, not even a famous, "people fly in from wherever to see you" kind of practice (unless you're a surgeon - solve someone's problem with a 90 minute operation and people will cough up 30k$; solve their problem with 90 minutes of careful thinking and they're like, you didn't actually do anything, and now you want multiple hundreds of dollars?)

But if someone wants to go ahead and pay me to spend 10 hours on a patient rather than 10 minutes, so I can analyze your symptoms and history and prior reports to hell and back, do some research, iterate a few hypotheses, wrangle phone battles with laboratories to get weird-ass custom tests done, etc. well, yes. I would be happy to do that. That's most docs' dream job. Seriously, and I kid you not even a little bit. Pay me per-unit time the same peanuts that the insurance company pays out, for the amount of time it takes to be your custom biochemical sleuth, and I'll happily do that over seeing a million patients a day.

But as long as you and I are operating inside of the system where I'm squeezed on every side to get you in and out of the exam room in <10 minutes, you're not going to get medical services that take >10 minutes.

Spoken from true experience! I, as most MDs will, totally agree.

How do I pay a doc for their time? I just sent emails to 35 different PIs this morning trying to find the most suitable clinical trial for my wife. I’ve learned a bit in the process but I’m still funtionally illiterate. Both of the oncologists we are working with just look for trials out of their location. When i ask what else is out there they point me to clinicaltrials.gov and say Godspeed.

First, let me say that I'm sorry that harm seems to have come your way.

Second, unless you are extremely rich and can privately employ a doctor like a saudi prince would do, I do not know of any (non-forbidden) way to directly pay your doc for his time. Hopefully I'll stand corrected.

Third, and that's the most important, primarily allocate your money to proven treatment. Clinical trials are not designed to help participants. Be weary of what people try to sell you. But if you've been dealing with the healthcare system for long enough, you probably know all about it already.

I realize that's not very original, but godspeed nevertheless!

Aren't there a growing number of doctors who don't take insurance (under names like "cash-only" or "direct primary care")?

Would you be able to buy a day of one of those doctors' time? It sounds like it won't run afoul of insurance but also sounds cheaper than having a personal physician.

There are a lot of doctors now that don't take insurance, and that you pay on retainer. The phrase you want to google here is "concierge medicine". It's definitely expensive, but not Saudi prince expensive.

Most concierge practices retain the same business model. They ditch insurance, and the billing staff they hired to wrangle the insurance, and reclaim the time they personally spent wrangling insurance.

They then keep roughly the same business model, charging more or less what insurance would have paid them. They spend more time with patients because (a) not on the phone fighting, (b) though the patient pool goes down, they’re replaced by not having to pay for billing staff.

Very very few “concierge” practices aim for any more deviation from the standard business mode than that.

If you want someone to spend 40 minutes with you rather than 15, that’s your guy. If you want someone to spend a week analyzing all your old records and sleuthing it out, that model still doesn’t support it.

I'm guessing that what you're saying implicitly applies to the USA. Just for a bit of perspective, I'd like to describe what this experience looks like for me as a resident of Germany, a developed and prosperous country that isn't the US!

The German government mandates making public-option insurance available for everybody, and exercises some of control on drug and treatment prices. That means everybody is eligible for "standard" run-of-the-mill treatment for any illness. Referral to specialists is doled out by GPs, and there may be inconvenient wait time for non-emergency treatments. Prescribed drugs may be generic rather than top-tier. Various forms of quackery, i.e. drugs and treatments without good evidence of efficacy, are not covered by public-option insurance; examples include acupuncture and applications of chiropractic not directly applicable to skeletal motion, i.e. Palmer-esque "subluxation" treatment. Placebos are non-reimbursable here, but homeopathy is still covered in Germany so it's available for placebo use, though it's being excluded in other countries. Patients can opt for non-standard products, though, if they're willing to foot the bill personally.

Anyone with, I'll say, "upper middle class income," though, can opt out of public health insurance and sign up with a private insurance of their choice. For employees, half of the cost of private medical insurance is paid by the employer. Private insurers must cover at least the same drugs and treatments as public insurance but both commodities can be invoiced at much higher rates; 2x and more is common. This makes private patients like myself very attractive to doctors and hospitals, of course, and we get all kinds of preferential treatment. Yes, this results in a 2 class society with regard to medical treatment and I enjoy the opportunity to be in the upper class in exchange for paying higher premiums. I can access any doctor of my choice, including specialists, and those doctors can recommend any product. Private insurers also won't pay for just anything but there's more leeway and of course there's always the option of paying out of pocket for anything that's not reimbursed. While medical services will typically carry a steep (usually reimbursed) surcharge, drugs mostly cost the same for everybody and will be reimbursed if they pass muster as medically necessary and effective.

I've heard of clinical trials advertising for volunteers, but I think policy on those is similar to what you describe: a trial isn't a treatment option for just anyone who wants it.

I'll answer both of your questions, spoken and unspoken:

The first: an excellent question. It's hard to actually pay a doc for their time. We're all up to our eyeballs in the current system, including contracts with insurers that say things like "if this person is covered, you're bound to take what we are willing to pay, this person can't pay you extra to buy extraordinary services." It's not trivial at all to buy a doc's time. That said, the best method is to call their office and ask to speak to their practice manager. That's the person who is usually tasked with keeping an eye on finances, and has enough time and attention left over to hear things like "I need a non-clinical medical opinion, I am willing to pay for the doctor's time for an interview." That is assuming you are paying them like a consultant, and not paying them to provide an actual medical opinion for your wife. The latter gets gutted by insurance contracts (unless your insurer has absolutely no relationship with this doc, in which case, yes, you can pay them for their services. Some docs misread some state statutes as not allowing cash services for patients that aren't insured with them, which is both wrong and ridiculous.)

The second: how to find a clinical trial for your wife. Honestly, our job is to keep up with clinical trials once they're published. Clinical trials in recruitment aren't on anyone's radar - there's no convenient way of finding them (inconveniently: clinicaltrials.gov) and no value to clinicians to read such a list even if it existed. The only ones we are aware of are the ones that, as you said, are recruiting patients at our location. The people that benefit from publishing trial availability most are the pharmaceutical companies that will ultimately reap a financial reward, so they try to reach out to patients directly via advocacy groups and things like centerwatch. So,if I really needed to find one, I'd:

(0) Check www.centerwatch.com

(a) Call major centers specializing in my issue, since they're the ones that most trials will pull into recruitment and/or they're the ones originating the trials. For cancer, that means contacting the relevant physicians at Dedicated Cancer Centers such as Dana-Farber Cancer Institute (full list: http://www.adcc.org/).

(b) Most cancers have patient advocacy groups, and they're often aware of major trials underway for their relevant cancer. For instance, for Sarcoma, you'd check out something like curesarcoma.org (who have a dedicated clinical trials resource page (https://www.curesarcoma.org/patient-resources/sarcoma-clinic...).

> this person can't pay you extra to buy extraordinary services.

That is frustrating to hear. I'd gladly pay a doc to spend the time to really get into things with me. Although I've learned to manage my problems, I'd prefer an actual solution to the current state of things.

I'm intrigued by a couple other things you said:

1) That we might be able to work something out with the practice to pay for consultancy. With my specific problems, I'm not even sure what specialist I need to talk to. I've seen many. They all try a couple things then point at a different specialty. Do you think someone could consult to at least narrow down which specialist can really solve the problem, or is that too close to a medical opinion?

2) That if I talk to someone not on my insurance, I probably could hire them. That sounds completely feasible. Say I did find someone with no relationship to my insurer - how would you recommend approaching them? Calling up and scheduling an appointment sounds like they'd expect me to just be part of the machine.

1) I think it’s effectively a medical opinion. It’s implicitly a broad-brush diagnosis.

2) I would call the office - or drop by - and speak to the practice manager. Doc on the clock usually doesn’t have time to take a dump, and the front desk staff don’t really understand anything beyond “make an appointment.” *

* corollary to all of the above: front desk staff nearly always suck because we can’t reasonably invest in better. Since physician revenue is strictly number of patients per year * whatever the average reimbursement rate is, and since price caps mean our waiting rooms are basically always at capacity, ... a 40k/yr front desk means precisely the same as a 80k/yr front desk to our revenue, but that extra 40k comes straight out of our pockets. Thus, our staff is generally bottom of the barrel. At least in private practice, what little of it survives.

I'm sorry to hear about your wife. What is she suffering from and what types of clinical trials are you trying to enlist her in?

'Western' medicine though as opposed to what? Nostalgic prescientific systems such as Chinese, ayurvedic, etc don't do anything at all.

So yes, scientific medicine definitely has huge lacunae. Given the relative slowness of progress in understanding complex systems science has had in general, they'll be there for a long to come. But it's not as if there's some other candidate 'system' that has a better understanding.

>'Western' medicine though as opposed to what? Nostalgic prescientific systems such as Chinese, ayurvedic, etc don't do anything at all.

That's not really true. Their explanations can be hocus pocus, but their mechanics/drugs/techniques can be as effective as western versions, simply come around by tradition/trial and error/Lindy effect and so on for millennia.

As effective as western versions, and often even identical but in a far less controlled form. Also often just as toxic.

>and often even identical but in a far less controlled form

I dunno, I'd trust something used for centuries (given it doesn't kill its users) over something hastily discovered, sorta understood, and rushed to market (after being extracted and distilled in the most potent chemical form) for profit...

At least traditional remedies/drugs don't have the "let's rush this to make a buck" nor the profit motive involved (well, people selling them today want to make a profit, but I'm talking about actual traditional drugs, used for millennia, and which anybody could e.g. just grow/distill/whatever in their country, so there was no exclusivity thing)...

The problem is that many "traditional" remedies/drugs such as those found in Ayurvedic and traditional Chinese medicine have the "this must work based on a priori magical/philosophical knowledge, so no amount of evidence that it kills patients / does nothing at all will convince us to stop" problem.

There very likely are traditional remedies that absolutely do work, but those lie more in folk remedies (especially use of native plants in teas), which tend to be slow trial-and-error over generations, rather than formal systems based on magical principles.

You touched on something there that has been a pet peeve of mine for ages. People dismissing treatments like accupunture wholesale because there’s no scientific evidence for Qi. So what? It’s the effect we’re interested in, not the explanation.

"People" might do that, but science certainly doesn't. Theoretical plausibility guides research, which is reasonable (there's no point in amassing prior knowledge if you don't use it). But empirical evidence is the determiner. And empirical studies of acupuncture have been a mixed bag - mostly it seems not to work, and where it does, sham treatments do just as well.

Homeopathy is worse, but acupuncture is up there as a 'treatment' with a very poor empirical base.

[an aside: I worked for a while in an fmri lab alongside a guy who did acupuncture reasearch. He was the most ideological researcher I've every come across in any field - flatly refusing to accept the validity of any data (even when collected by himself) that didn't support acupuncture's use. As someone now living in Australia's hippy zone, I find this a very recognisable & alarming trait of the 'alternative' health field.]

If acupuncture had an easily and consistently replicable effect it would have been incorporated into medicine, even if we didn't understand how or why it worked. (just like paracetamol and any number of other widely used drugs and treatments we don't really know how or why they work)

> their mechanics/drugs/techniques can be as effective as western versions

This may be true of some indigenous medicines, discovered by trial-and-error and careful observation over multiple generations. These are disappearing fast, and remain largely unsystematised.

But treatments from the major medievalist 'systems' are different - their very strong derivation from fictional rubrics has resulted in their use being insulated from disconfirming observation (as was medieval 'Western' medicine). I'm not a specialist, but results I've seen from contemporary studies of Indian and Chinese treatments seem to show they don't work.

And then there's the more impressionistic evidence from history. The populations of premodern India & China were horrifically unhealthy from all accounts I've read. Their medical systems did nothing for them.

Don't worry. (Almost?) All the traditional drugs that are effective have been stolen by Big Pharma and are now produced in mass and distributed in a more pure form (or perhaps with some chemical tweak to make it more safe, reduce the side effects, make it cheaper or easier to produce, or as part of an evil trick to get the patent).

So the effective ancient drugs are now part of medicine. Only the leftover are still classified as "traditional" medicine, so don't expect to find too much useful things there.

As opposed to something holistic but still scientific. By “holistic” I mean that western medicine divides specializations too much and anything that doesn’t fit one box just falls outside everyone’s field. Generalist doctors aren’t very holistic either - they tend to just treat very common things or refer to a specialist.

Example: if you have abdominal pains, you will be referred to a gastrointestinal specialist. After some tests and maybe a gastroscopy they will diagnose or rule out the common things: ulcers, celiac disease etc. This is what modern western medicine excels at. They find and cure the likely things quickly. They can often rule out the dangerous things like cancer.

But now imagine for a second that the abdominal pain actually was a manifestation of a back disc issue. Few gastrointestinal specialists would find that and say “I think your back is the real problem and the gut pain is just a secondary symptom”. And you have already been referred as far “down” in the specialist chain as you can. This is when people start fumbling after alternatives.

Note that there is nothing “non western” about having a more more holistic (less narrowly specialized) perspective on medicine, it’s just something that is hard so doesn’t get much attention. Perhaps the traditional specializations should be restructured? We are now seeing some headway such as the connection between gut bacteria and mental health for example.

Sure - agree with all of this. That's more to do with institutions than 'western medicine' as a science. Most science disciplines are similarly imperfectly implemented when they hit the real worlds of politics, inertia, profit, tribalism, etc.

> But now imagine for a second that the abdominal pain actually was a manifestation of a back disc issue. Few gastrointestinal specialists would find that and say “I think your back is the real problem and the gut pain is just a secondary symptom”.

What are you talking about? Referred pain is well known and any doctor and especially any specialist will have studied and be familiar with common and likely referred pain pathways in the same way that they're familiar with other common interactions between systems. If you're struck with left arm pain while seeing an orthapedic surgeon, they'll make sure that you're not having a heart attack rather than trying to rule out orthapedic causes first.

In your example, assuming an uncommon referred pain that your gastroenterologist is not familiar with, what more do you want from them than ruling out a gastrological cause? It's incredibly useful information that you and your primary care physician will be able to use to help track down the real cause. And if, after consulting multiple specialists, your primary care physician has no more ideas for pursuing the root cause of the issue, they'll help manage your chronic condition in consultation with a pain specialist and psychologist if required.

Bottom line, doctors think more holistically thank you realise. To the extent that isn't sufficient, the medical system as a whole should be treating the patient as a whole. If that's not happening because of a variety of perverse incentives that's the fault of how we structure and pay for our healthcare systems and not the fault of western medicine.

> what more do you want from them than ruling out a gastrological cause?

I just want to get rid of the abdominal pain - I really don’t care about whether the cause is actually gastrointestinal. I want to rule out illness, that they are good at.

If the referred pain isn’t a known condition such as a herniated disc or anything else that shows up on a test o image - then they are usually not concerned at all (no illness - job done). And even if it is a known/visible cause outside their specialization, they are extremely bad in my experience at both recognizing and “referring sideways” to another specialist.

I live under a single payer system so the economics probably don’t factor into it, but I think the siloed thinking at specialists requires that the generalists take a holistic perspective, but in reality they cure tonsillitis and point to specialists. Somewhere I feel there is a gap.

I'm not sure there's a huge distinction between "how we structure and pay for our healthcare systems" and "western medicine."

As for the holistic view - there's a difference between check-list diagnosis (left arm pain -> possible heart attack) and what is effectively personal medical research, which may require knowledge of everything from diet to sleeping habits to emotional stressors to historical infections and illnesses. (That's a very short list, and not in any way exhaustive.)

There are limited professional incentives for doctors to dig into patient history with that level of detail. It's not a matter of specialist referrals, because some problems can be caused by multiple minor factors interacting with each other. Or they may have very generic symptoms, like fatigue, with a ridiculously huge number of possible causes. Or the causes still aren't understood.

Medicine is an example of a huge market failure. Not only is it the single biggest cause of personal bankruptcy in the US, but most people have had personal experience of obvious delayed diagnosis or outright misdiagnosis.

An effective market - rather than a "rational" one - could easily support a much larger number of doctors and supporting medical professionals, including non-corporate researchers. The effect on "western medicine" would be a dramatic increase in effectiveness.

> I'm not sure there's a huge distinction between "how we structure and pay for our healthcare systems" and "western medicine."

Given that different 'western' nations structure and pay for their health care systems entirely differently, there must be, mustn't there?

Or are you conflating "Western medicine" with "US medicine"?

Indeed you are:

> Medicine is an example of a huge market failure.

That’s kind of like complaining because programmers don’t know every language.

GP’s refer to specialists because medicine is such a huge body of work. Keeping up with even a small field takes a lot of time. Someone that tries to keep up with and more importantly remember everything is not going to succeed let alone have time to help you. Sometimes the next step is to take these results go up the chain and try again not hope the wrong specialist can still solve your issue.

It’s not a perfect system, especially if you actually have multiple independent unusual issues at the same time. But, that’s life with imperfect humans.

It's really more like wishing a consultancy would employ a competent project manager. The thing about systems is that they're designed (even if only by refusing to design and calling it 'market driven'). Some work better than others.

I've certainly seen the difference in the small number of countries I've lived in - some do a much better job of coordinating services between generalists & specialists than others. But this has nothing to do with 'western' medical science per se, which is the primary modality of each of those varying systems.

As opposed to holistic. Western medicine is excellent when you can diagnose a specific single issue and fix it.

For issues that don't have a single-specific cause, the western medicine won't help much - it can cover specific symptoms, and tell you to do more sport, fix your diet and go to a therapist.

Example - all kinds of chronic pain (IBS etc), chronic tiredness, etc. Doctors will order all kinds of tests, and if there is no clear single issue, they won't help you.

Eastern/holistic medicine may not be perfect, but if science-backed options are exhausted, it's all there is.

Also, with all my respect and sympathy towards strict science, it has it's limitations - especially when it comes to complicated systems. That's why nobody argues for using science-based methods of running startups :)

Finally, fun fact, if we use current medical criteria, parachutes were never proven to work. No double-blind placebo-controlled human trials. :)

it has it's limitations - especially when it comes to complicated systems.

I agree - the science of complexity is in its infancy (as I mentioned in the parent).

But your conclusion doesn't remotely follow. That there are conditions scientific medicine isn't yet much help with (truly!) does not connote that non-scientific systems must therefore do better.

Eastern/holistic medicine may not be perfect, but if science-backed options are exhausted, it's all there is.

But the treatments promoted by the major medival 'Eastern' systems don't work. You don't need a new understanding of complexity to demonstrate this - you give sick people the treatments, and see if they get better. They don't. So 'all there is' in this case is nothing.

Hardly surprising from a prior plausibility angle: the 'whole' their so-called 'holistic' rubrics work with (chakras, qi, etc) are old metaphysical fictions.

I consider myself lucky when I find a doctor who acts as a people mechanic rather than a clinician.

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