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).

> 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.

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.

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.

> 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.

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.

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.

You’re absolutely correct, but I think your story about the anesthesiologist shows that there are some doctors who do care.

Most doctors are very bad at data as well. Few understand statistics. That does not help.

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."

Malignant hyperthermia?

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.

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.