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by senderista 5 days ago
Many years ago I was attending pre-surgery for a hip replacement surgery for my sister, who had known severe reactions to anesthesia (actually required a tracheotomy for a previous reaction). The anesthesiologist asked to speak to us privately and informed us that in their opinion, my sister had maybe a 1/3 chance of not surviving the surgery. They also mentioned that this was a breach of protocol and they could get in trouble for talking to us directly, but their conscience wouldn't let them do otherwise. We returned and asked the surgeon if they really thought the risk justified any potential benefit. The surgeon shrugged and said "probably not, feel free to call it off". Keep in mind that nobody on the care team had previously discussed any risk or indeed any tradeoffs whatsoever. This was at one of the best-regarded children's hospitals in the USA.

The lesson for me is that you must advocate for yourself and your loved ones in the medical system, because doctors will not do it for you; they may not even perform the most basic risk assessments. And you have to try to quantify risk yourself, because doctors will refuse to give you the slightest hint of any number attached to risk (I know, I've tried many times).

15 comments

> The lesson for me is that you must advocate for yourself and your loved ones in the medical system, because doctors will not do it for you; they may not even perform the most basic risk assessments. And you have to try to quantify risk yourself, because doctors will refuse to give you the slightest hint of any number attached to risk (I know, I've tried many times).

Doctors vary wildly, and that's part of the issue. For instance, my oncologist had zero problem rattling off mortality statistics. I've personally had doctors try to sell me surgery before identifying the issue, but I've also had doctors successfully talk me out of what would have been useful procedures by offering their risk/benefit assessment unprompted.

It's like any other field. If there are 10x and 0.1x engineers, you bet there are 10x and 0.1x doctors. A 1hr intake appointment isn't anywhere near enough time to judge even for folks in the field.

>you bet there are 10x and 0.1x doctors

But sadly, with doctors, someone who provides 10x value to the patient might not be the same ones that provide 10x value to the Hospitals that employ them. Which means real 10x doctors might be less and less visible.

At least in software, you don't need a certificate or association with an institution to practice the trade. So you can be self employeed while free to deliver 10x value to your customers..

Also keep in mind that you get hip replacement surgery because of constant, quite intense, pain.

The doctors obviously also talked to the patient and he or she obviously felt that just reducing the pain was worth the risk (because a replacement hip will still be long-term painful, so it's an improvement, not a solution. This will have been discussed extensively with the patient) ...

Or the patient may even have felt that the risk was in fact also a solution to the pain. The patient may have chosen not to talk about this to their relatives.

When you're really young medicine can feel like it solves problems permanently, especially when you're still growing. This is almost never actually the case. Medicine mitigates, makes bad situations livable for longer, restores part of your previous health. If you treat it like a solution once you're ... say 50 ... you will be severely disappointed and that can lead to drastic decisions. Or if you live your life like some people do "medicine will fix it, let's JUMP" you're likely to be disappointed, suddenly.

Quite frankly, no one expects that and that is not where the disappointment comes from.

The disappointment comes from the fact that doctors are mostly clueless and follow checklists, and thus prescribes measures without having a deep understanding (or interest even) of the situation.

Why? Because these people (doctors) were never curious to begin with. 99% of the never cared to understand biology before they started Medical school. They are only in for the $$$ and status. And I will never trust a doctor, or even a programmer who is not curious about the specific situation or the problem that I am having. And such people are becoming rarer and rarer to find...

> 99% of the never cared to understand biology before they started Medical school. They are only in for the $$$ and status

This is a very cynical take on the subject and I can’t imagine it’s backed by any data. As a retired medical doctor, my observation differs; idealism and curiosity appear to me far more common among medical trainees than you give credit. I spent my entire career in teaching hospitals. I do despise the ostentatious display of amassed wealth among some doctors; but wouldn’t take a general message about the profession from that.

>This is a very cynical take on the subject and I can’t imagine it’s backed by any data.

Imagine if being a doctor did not pay as well. Imagine it only pays just enough to sustain a small family. What percentage of your trainees do you think would remain in the course, for the love of the trade?

There is a LOT of curiosity in the medical profession. And outside of the medical profession, even more. In fact, far too much. If you think this through I think you'll agree it has no place in the treatment of a patient, especially not where the condition is not life-threatening.

Trying medicine because "you've heard that ..." is a fancy way to commit suicide, or worse. And yes, a great deal of people want to do that, until of course, they have to face the consequences. Then they want it fixed, except there is no fix. No doctor should want to be part of that, and these Chinese "researchers" should be made to answer for manslaughter for what they did.

Surely the story we're talking about illustrates this problem? For all we know the gene-editing worked! That was NOT the problem that killed the girl. Congrats, your "curiosity-based treatment" would have made the girl 10% smarter in 10 years. Probably. Unfortunately, she's dead in less than a week. Congratulations!

Is that REALLY something you'd like to hear about anyone you know? Would that satisfy your curiosity? Big risks, even ones your not aware of, are NOT a reasonable price for trying out medical treatments.

> If there are 10x and 0.1x engineers, you bet there are 10x and 0.1x doctors.

This is a false equivalency, as the 10x engineer is measured differently than a great doctor. A 10x doctor in your analogy should mean "this doctor is least likely to kill you during surgery", or "is better at following checklists".

The "best" doctors I've met have off the charts systems analysis skills, and they were in all kinds of specializations. Human physiology can be quite counter intuitive at times, and great doctors have great observability skills.

It was an analogy, not an equivalency. There are any number of differences one can find.
This applies to engineers as well! The ability to connect specialties is what separates the outstanding from the great.
What do they call the guy that got the lowest grade in medical school? Doctor
They actually don't call them doctor, because the lowest grade in medical school is an F and plenty of wannabe doctors flunk out every year.
"What do you call the person who graduated bottom of their class in medical school?"

(At least that's how I've heard it phrased before.)

A passing grade in a U.S. medical school is a 70% and they don't grade on a curve.
What do they call the guy who got the lowest possible passing grade in medical school?
Anecdotal, but the passing grade is much higher in medical school than other programmes, like 70-75%. But interestingly, it's often pass/fail instead of grades.
> If there are 10x and 0.1x engineers, you bet there are 10x and 0.1x doctors.

So if we already have a massive doctor shortage, including 0.1x doctors, you can begin to guess how awful the medical system is in the US.

You could be paying exorbitant rates only to end up with a 0.1x doctor, because there was literally no one else within 30 miles in a rural area.

Pretty depressing to think about.

It’s one reason why I will absolutely not move to a rural area, no matter what the benefits are to cost-of-living and getting away from the city. Rural America is getting completely emptied of all its medical providers, because it’s impossible to provide medical services at a profit. Doubly-so if you need any kind of specialist care; in rural areas, forget about it.
No it's not like any other field. There's no such thing as a 10x doctor. A '10x' doctor is just as likely to kill you as any other especially when it comes to experimental never before done procedure. In fact a 10x doctor like Qiu is more likely to take risks. This is medicine not a software shop where we measure productivity by number of commits or number of surgeries per hour except by 10x you mean 10times more likely to be careful and ethical
I think there absolutely are 10x doctors! When every doctor or specialist you meet in a field says "yeah, Dr X is a massive asshole and I kind of hate him personally but if I ever need [not-particularly-rare procedure Y], I want him to be the one to do it", I think Dr X counts.
Yeah, I don't mean it literally, nor do I necessarily agree with the concept of 10x engineers in general, but it's a useful shorthand. I would bet doctors vary somewhat less than other fields, but my family has been surprised and burnt by the variance still there, and I'm the only non-doctor!

On the topic of 10x surgeries per hour, the 1800s were an interesting time! This guy in particular:

https://en.wikipedia.org/wiki/Robert_Liston

What exactly do you mean by "10x doctor"?

Some surgeons have a 10x higher 'revision rate' than others, and from what I understand, that may be an understatement. Many of the statistics which would indicate the ones to avoid are not tracked, precisely because the doctors do not want them tracked.

doctor stats are also misleading af, since the busiest times often require the best, most reliable docs, and they also have the highest rates of fatalities

7pm-2am on friday is when all of the nasty cases come in, and the best surgeon in the world ain't gonna save many of them.

You'll have to ask the OP what they meant by 10x. I assume they meant it in the programmer/hacker sense of producing more work in the same amount of time than their peers or being a 'rockstar'
Obviously they simply mean highly talented compared to their peers.
The point is, there are excellent doctors, good doctors, bad doctors, and awful doctors who should probably have their licensure revoked; just like engineers, or any other profession, there is a spectrum to the quality of service/talent/care.
Yep, this.
https://youtu.be/6h6dhevlb0w?is=t-cLAwe5vBuKx_fZ

Your Coworker Who's a 10× Engineer

This seems very unusual on many, many levels. I hate to ask, but were you a child when this happened? If so, are you sure you were in all the conversations. First- There are less than 600 total hip replacements conducted each year on children in the United States. Second- It would be unusual for this surgery to be even recommended without something serious being addressed. Third- Failure to discuss risks and tradeoffs would be regarded as malpractice if something went wrong.
I was just out of college and I believe I was involved in all conversations with the care team. My sister suffered from a rare congenital condition (MPS, Morquio syndrome) which among myriad other complications involved arthritis in the hips. (Something I didn't mention is that she was expected to live less than a decade after the surgery, which proved roughly accurate.) The surgeon was willing to discuss risk vs. benefit (although absolutely not quantitatively), but only after we brought it up after the anesthesiologist approached us. It was never discussed beforehand, to the best of my recollection.
The problem is, how do you know when to advocate for yourself?

I have zero idea if what the doctor is telling me is accurate or not. I'm not a doctor.

This is why people are moving away from main stream medicine, in my opinion.

"do your own research" may get mocked, but it's often the best strategy. You just have to make sure it's the right place, professional guidelines, pubmed, and anyone referencing those is usually best. A good doctor won't have issues discussing something from that kind of source.
Right, and the approach here isn’t to take the research at face value. It’s to take the research and derive questions, and then ask your doctor. You can be aggressive.

I had a rare and very complicated surgery for my cancer. I researched it heavily, and going into the appointment I already knew how the surgery should be performed. I asked the surgeon many questions, including how often he performs this surgery, for how many years, and how many complications he has. He was a bit offended. I also asked him how he would do the surgery, and he told me a rarer, more complicated method that is typically reserved for pre-chemo patients (chemo melts your insides, makes some surgery more complicated).

I told him this was unusual, not standard of care, and that I was skeptical. And he methodically laid out why I was a good candidate even though I’ve had chemotherapy. The surgery was very successful, and he was a fantastic surgeon.

But you still have to push. And if you don’t get the answers you need, you go somewhere else.

Also, research yourself and all the ways that you differ from the norm. Medicine makes its recommendations based on a standard patient, and knowing the ways in which you are not a standard patient and ensuring your doctors have this information is important.

For example, I have very weird/non standard genetics when it comes to processing medications, so I've had to learn which classes of drugs I need very small doses of or that I can't take at all. (Some drug classes aren't made in small enough doses for me to take safely). So I have to relay this to doctors and we make our medication decisions accordingly.

Or if you run hot or cold. My body temperature is usually a ~ 96.5, so I'm feeling awful by the time my temp hits 99.5, even though that doesn't register as a problem generally.

Or how I pushed to get a mammogram covered before it is ordinarily because my mother, grandmother, and great-grandmother have all had 3+ rounds of triple-negative breast cancer even though they don't have the BRCA genes: the standard recommendation doesn't fit our family and I am high risk despite not having the standard markers for being so.

respectfully, a majority of the "do your own research" crowd are not reading any PubMed or professional guidelines.
When a measure becomes a target, it ceases to be a good measure. If an article/research quality is assessed by if it appear on pubmed, then appearing on pubmed becomes target for all research. And thus appearing on pubmed stops from being a good indicator.

You can ask for specific ways this can happen. But that would be point less. Human behavior and incentives work in ways that are beyond specifics.

Everyone here probably knows this already, but forgets it when it comes to medical domain.

'get a 2nd opinion" is doing that kind of research, and has been guidance for years
You supply it to an LLM, I suppose. In my case, both my parents are surgeons so I have a highly aligned information source but with the most modern LLMs and good prompting discipline (you have to be good about encouraging anti-sycophancy etc) I get high concordance.

My dad enjoys seeing if the chatbots can diagnose odd stuff and they do very well to his great delight.

I will warn you, though, that if you’re a poor user of LLMs you will get bad results so don’t do this if you can’t prompt any frontier chatbot appropriately.

Having dealt with the medical system recently, if there isn’t immediate harm involved with waiting, always advocate for yourself and consider a second opinion. The doctors will think you’re annoying and that you trust the internet too much but it’s their job to make you understand why elective procedures are necessary. Don’t let someone trying to rush to their next patient hurt your health outcome. I think in emergency situations this all changes though.
During my wife's second pregnancy, we got a lot more information and did more preparation than for the first.

Someone shared the BRAIN acronym for making decisions.

Can't remember it exactly, but it was like ask / think about benefits, risks, alternatives, intuition, doing Nothing (for now).

I think the Nothing one was the most important, what happens if I don't take action and defer the decision. Medical professionals often make you feel like a decision is urgent when sometimes it is not.

I like that rule. I’ve also found that for most things that are risky enough to warrant a second opinion it will probably take long enough to get in that you can schedule it several months in advance and then use the intervening time to learn more although calling medical offices to schedule appointments is no fun.
Always advocate and avoid delegation to experts who have little stake in the outcome.
Parent had a good question and this is restating what’s already been said.

_how_ do you advocate? If I could avoid delegating to experts, I wouldn’t be in the situation in the first place.

Ripped from another comment, I’ve gotten good at advocating for myself:

Do extensive research before hand. AI can aide research, but you have to prompt it right. Tell it to do web searches, and tell it to only use trusted vetted sources and papers.

And the approach here isn’t to take the research at face value. It’s to take the research and derive questions, and then ask your doctor. You can be aggressive.

I had a rare and very complicated surgery for my cancer. I researched it heavily, and going into the appointment I already knew how the surgery should be performed. I asked the surgeon many questions, including how often he performs this surgery, for how many years, and how many complications he has. He was a bit offended. I also asked him how he would do the surgery, and he told me a rarer, more complicated method that is typically reserved for pre-chemo patients (chemo melts your insides, makes some surgery more complicated).

I told him this was unusual, not standard of care, and that I was skeptical. And he methodically laid out why I was a good candidate even though I’ve had chemotherapy. The surgery was very successful, and he was a fantastic surgeon.

But you still have to push. And if you don’t get the answers you need, you go somewhere else.

> This is why people are moving away from main stream medicine, in my opinion.

What other type of medicine is there? Most "non-mainstream" things are pseudoscience nonsense.

How is it any different for non-mainstream medicine? How do you know if what your homeopath is telling you is accurate?
US healthcare is very strange in that on one hand it pinches pennies and is incentivized to not fund treatment, but on the other hand there seems to be some kind of internal incentivize to spend liberally and do everything.

The whole system is a mess of perverse incentives. I've often described it as "everything bad about socialized medicine combined with everything bad about privatized medicine."

Some people thought it was a good idea to cap [administration cost + profit] of health insurance companies as a percentage of premiums. As a result, health insurance administrators have two ways to increase their compensation: they can compete to acquire more customers, or they can artificially inflate costs per customer. Guess which one is easier! Now you don't have to wonder why medication is half the cost when you buy it without insurance...

Love to hear all the time how the "free market" is ruining healthcare. Of course everyone knows a "free market" is when you have profit caps, supply restrictions (residency cap), government-run marketplaces, byzantine tax subsidies tying insurance to employment for no reason, etc etc

That's what I meant. It's over-regulated and sclerotic, criticisms often levied at socialized medicine, but is also unequal, expensive, and excludes many people. So it's like everything that sucks about socialized medicine without the upside.
> Love to hear all the time how the "free market" is ruining healthcare. Of course everyone knows a "free market" is when you have profit caps, supply restrictions (residency cap), government-run marketplaces, byzantine tax subsidies tying insurance to employment for no reason, etc etc

What people are talking about with regard to health insurance being ruined by being market based is that the profit motive should not be applied to it. The basic fact is that it should be some form public service and not reliant on a system which has as its incentive maximizing profits, and attempting to regulate it into being patient first and not profit first will always have side-effects like you pointed out.

Removing the "evil" profit motive has always been an argument for socialism. If it would work for healthcare, why not everything?
Steel man counter-argument: health care is weird and different and special in lots of ways.

The people who need it most are often the least profitable to treat and the least able to pay for it. That's because being sick negatively impacts your earning potential. The sicker you are the less you can afford a way to pay for treatment to not be sick. It's analogous to the problem with debtors' prison.

Obscure or low-survival-rate conditions are almost by definition unprofitable to treat. Rare condition? Stage four cancer? It's most profitable to let you suffer or die. There's not enough of a market for the former and the latter has a low probability of leaving someone behind to pay the bill.

Old age care can't be profitably offered on insurance or credit. Old? Pay cash or die.

Demand is not infinite because (excluding certain neuroses) people generally do not want health care. They only get it when they need it. Demand does not skyrocket with reduced price or free availability, so the system doesn't automatically just drown in demand when you take the cost away.

Competition is sparse because talent is scarce and the cost means there tend to be only one or a few hospitals covering an area. Specialty services and general practitioners are different, but for advanced and expensive care it tends to be not quite a natural monopoly but almost one. It's like how there's not very many space launch companies. Because it's so f'ing hard the supply of competitors is small.

Lastly, because customers are ignorant (very few people are qualified to evaluate health care tech or treatments), quackery is structurally more profitable than medicine that works. It's hard to have a healthy market when fraud is massively easier and more profitable and the customer finds it hard to tell the difference. Add to that the fact that try before you buy and comparison shopping are almost impossible, especially for serious medical care. You can't exactly toss out or return a surgery.

Well it does work for healthcare pretty much everywhere.

Why is the fire service socialised in the US. Why are roads. Why is water?

Are we socialist because we don't charge people for investigating crimes they report?
If anyone is curious, this the USA, it came from the ACA in 2010 championed by Democrats. It's almost like it doesn't matter which jersey is being worn.
This is what happens when healthcare is for profit.
It is more complicated than that. Markets have the structure and regulations we give them. Health care gets set up and delivered with very different concepts and guidance in various places regardless of whether it is for profit.
We don't have a true free-market in health care, so regulations and various programs are meant to create an environment where we get the benefits of a free market while still having universal availability and a universal "standard of care".

Of course it doesn't work very well. That's asking too much of any system.

the only problem with communism is nobody's actually tried #TrueCommumismTM
How is not weighing risk not for profit, when not weighing it is crucial for profit?
The UK has healthcare for profit, and not just the private healthcare options like BUPA -- GP surgeries are privately owned.

Does it happen there?

I live in Panama and yes it happens in for profit healthcare.
> Keep in mind that nobody on the care team had previously discussed any risk or indeed any tradeoffs whatsoever. This was at one of the best-regarded children's hospitals in the USA.

I bet you live in the Seattle area. Similar experience with my daughter.

You are correct.
That is terrible and I am glad someone broke ranks to inform you of the risk.

My wife had a very agressive triple-hit lymphoma and CAR-T was eventually suggested. Fortunately, the medical team was very honest about how hard it impacts your body, with very likely chance of death. My wife decided to do it, and it almost killed her. The team actually had to "shut down" the process, so she didn't benefit completely from the treatment. The suffering was pretty immense as well. She died a few months later regardless.

We are (were) both engineers and we did wonder how many might get streamrolled by the whole medical process, where you do get this odd combination of extreme indifference and optimistic exuberance.

Sorry for your loss, I feel your pain. Your wife was very brave to give it a shot and take the fight to the limit, and you should remember her courage and honor her memory and keep fighting till the end regardless of what hardships you encounter in life.

The treatment actually killed my dad. I may be wrong but it appears with the treatment there was a 30% chance of some recovery, 40% chance that it would at least stop the cancer growth, 30% chance that it had no impact. I guess you have to take that chance when you have no other option. I don't blame the hospital (which was terrible) or the treatment, it was the last card left. And our loved ones end up in the 30% statistic and maybe as another anecdote for the risks section, but we know what we they went through and we won't forget.

It was tough because my dad was suffering, but he still was active and had at least a few months left without the treatment and I know that at that point in his battle he did this treatment to keep fighting for us rather than for him, even though it was he who had to suffer through it. So I am going to honor his memory and keep fighting until the end as well.

Thank you both for sharing.
Is that even legal? Can a bunch of people decide to go ahead with performing some procedure that has a 1/3 chance of killing the person, whose life is not in danger if it is not performed? If that person dies, that's seems like murder.
All that we know is that the doctor carefully guided the patient out of the intervention, flashing a value that nobody had introduced before in the conversation. Is unclear WHY without more information.

The fair possibility is that it would be not the best choice for the patient,

But other possibility could be a schedule problem with the doctor holidays for example.

Or that it would be too expensive for the hospital

Or that they didn't have the materials or the experience

To go forward with this operations the interests of the patient, the doctor and the hospital must match. Sometimes only two parts benefit from it.

Nonsense easy to say if you’re not in that position, there are many procedures that are done today that we take for granted, and almost every one of us if we live long enough, will face the doctor telling us that there is nothing to do, the only chance you have is a Hail Mary and even that will only prolong your life a short while but it won’t fix the problem.

Penicillin, antibiotics, and many vaccines have only come into general use within the last 80 years which is what one or two lifetimes. Many/every medical procedure starts somewhere everyone just hopes they don’t start with them.

It seems clear from the grandparent comment that this was not a life-saving procedure. Operating on someone for a non-life-threatening reason where they have a 1 in 3 chance of dying according to a documented prior reaction to anaesthetic, is akin to attempted murder.

You might as well tie them to a post and shoot an apple off their head with a rifle from 50 yards.

Most doctors are very bad at data as well. Few understand statistics. That does not help.
1/3rd chance of not surviving is like suddenly dashing across a busy freeway without looking, from a crouched position behind a bush. That's what it means to send the person into that. Yikes!
This is fear mongering at best and unbelievable. Why would a surgeon know anything about anesthesia risk? Anesthesia regurarly cancels cases due to safety concerns - there's no "protocol" or "getting in trouble" (what does that even mean), that's standard of care. "Anesthesia" is a doctor too and ultimately holds the call on if they will put a patient under or not.
This is matches my experience, having been under at least 30 times.

The phrase:

"Why would a surgeon know anything about anesthesia risk?"

could be misleading to someone who has never undergone (or just didn't understand) what a pre-surgery anesthesiologist consult is for.

Surgeries are performed by teams. Anesthesia is one aspect of the procedure and most of the doctors know some, while surgeons know a great deal. The anesthesiologist's job, as a physician, is to monitor, adjust, and assess risk during the procedure. This disclosure, if it happened, was during the consultation.

> Why would a surgeon know anything about anesthesia risk?

Idunno, maybe because their entire career is performing surgeries which include anaesthesia and they have worked for potentially decades alongside anaesthesiologists? For instance, I've worked in the same type of role (programmer) for my entire career and I somehow know a ton about the disciplines adjacent or closely related to mine, especially because I work with them every day.

Graciously, I think this was the point they were trying to make, with an inappropriately sarcastic intro.
Medicine is not programming.
"Anesthesia" could also be a nurse anesthesist, nurses generally aren't supposed to contradict doctors in front of patients
I think this is how they avoid liability. They lay out some options and leave it up to the patients, with no medial training, to decide how they want to move forward.
Off topic, but:

>will refuse to give you the slightest hint of any number attached to risk (I know, I've tried many times).

reminds me of my lawyer... (I lost)

You’re absolutely correct, but I think your story about the anesthesiologist shows that there are some doctors who do care.
Malignant hyperthermia?
I don't believe this for a second. The anesthesiologist is obligated to tell them this, they meet and discuss this kind of thing with the family/patient. It isn't a breach of protocol, the doctor and surgeon would also have been informed and would have relayed as well.

Fear mongering bullshit.

I agree, sounds suspicious and likely misremembered.
I can confirm it with my mother, but this is what happened to the best of my recollection. You can fuck right off with your accusation that I am fabricating this story.

For reference, this happened about 20 years ago.