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Comment by ajmurmann | Hacker News Reader

I honestly don't understand the reason why it's so hard to try to help terminally ill patients with unproven methods as long as everyone agrees that there is no other, better way to help and as long as the patient wants it. Prohibiting this seems like a lose/lose decision to me.

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It's a very long tradition, with well-trodden philosophical background: "Primum non nicer" (first, do no harm).

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

Given the consequences of mistakes, a conservative approach has been considered the best. "It was nature killed her, not me" being easier to stomach than "oops".

Except "do no harm" is woefully inadequate because it fails to take into account opportunity cost. They are doing TONS of harm by failing to allow willing people to try new medicine and advance science and the human race, all because they have some warped sense of morality that's got horse blinders on.

They are absolutely not ignoring opportunity cost. This issue has been discussed very carefully by sophisticated people for thousands of years.

The current system does allow for experimentation, but provides a conservative framework for it.

It's huge personal hubris to announce that you know better and they haven't thought it through. Which is one of the things the approach is aimed to protect us from.

I won't debate you on whether I am correct. I will only state that science is (by definition) advanced ONLY by people over time who knew better, held up by everyone else hadn't thought it through.

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

June 12: Marshall intentionally consumes H. pylori and becomes ill. He takes antibiotics and is relieved of his symptoms.

That's personal hubris! :)

There is a selection bias here, you hear about the successes but not so much about all the crackpots that increased suffering needlessly. This article is about one such case, in case you didn't notice.

> The current system does allow for experimentation, but provides a conservative framework for it.

Which most people seem to think is wrong. The vast majority of treatments that get prescribed by doctors are unproven in terms of safety and efficacy. The main differences between the status quo and a proper experiment is that we're not recording any data or allowing for informed consent.

(too late to edit, I notice that spell-check has 'fixed' my latin. The link is the correct latin phrase.)

Doctors have egos and incentives that could lead to terrible patient outcomes.

For many terminal cases, there are still well optimized/studied systems and procedures to prolong and improve quality of life. Unless a patient doesn't qualify for any of those, the doctor is taking a risk on bad odds, a risk most patients can't fully understand.

What's the risk for terminal cases? Dying sooner? I'm honestly asking, not trying to be snark.

Prolonging someone's suffering? Giving their family false hope? Illegally test a technique/method or drug just to see if it works for someone else benefit?

If the patient's best interests are no longer the primary concern all kinds of shady things become possible.

Dying sooner, living the same amount of time with horrible pain or disabilities due to the treatment, increased suffering.

Dying sooner, degraded quality of life, and costs associated with treatment/management.

It's complicated because the costs are borne by a number of different parties: the patient herself, her family, the insurer (private or government).

For example, a patient could live longer but develop disabilities that require extreme measures in terms of treatment and family care, and cost a lot of money. The risks of all these are going to be unknown in very novel approaches, and people with different values are going to vary in their preference.

Understanding those risks and developing guidelines on when to pay for what are one activity of the FDA and major payors like Medicare. A patient and family facing a decision about the value to them in a time of crisis is going to be a lot less informed than those agencies, and it will be a lot easier for a doctor to mislead them (intentionally or not, but doctors aren't immune from over-optimism that their clever ideas might work).

At the same time, it does seem like there should be some protocol where a terminally-ill person can be considered sufficiently informed to take the risk. This is hard, because the risks accrue to individual parties (e.g. the university getting sued in this article) whereas the benefits are diffuse (medicine learns whether induced brain infections improve survival in glioblastoma patients). But without this protocol, we are always going to have stories of patients whose treatments and deaths could be teaching us life-saving lessons if only we could legally do what they want to do.

Yeah, mostly dying sooner or under worse conditions. A lot of terminal patients have many months prognoses.

People can seek pain relief, mental health services, etc. that they might not be able to pursue if they take a risky procedure.

The problem is that the treatment can make the situation worse, like in the case of the woman who survived for a year with the infection. It can be argued that a quicker death would have been better in her case.

I agree that a quicker death would have been better. However that's often times the case add yet most states don't even site patients to choose between suffering and death. The patient suffered so much because the treatment worked, but not well enough to safe her. That however can happen with many well proven treatments as well. I have a relative who just got a port to feed her liquids, dive she cannot swallow anymore. That treatment will extend her life longer, but she well probably will just suffer longer and die soon anyways. This seems to be a constant trade off in health care these days and usually we decide blindly in favor of extending life regardless of the quality. How we judge experimental treatments seems completely different though.

> the treatment worked, but not well enough

Well, the prognosis is 14 months, so if she lived a year, maybe it didn't work?

Many risky and unproven treatments are first trialed in these cases. The artificial heart is one example.

http://www.reuters.com/article/2015/10/14/us-carmat-patient-...

They shouldn't prevent it, but there should be some rules in place to ensure the procedures, practices, treatments and results are well documented so others can benefit from the trials.

Also, there should probably be some rules around peer review prior to starting a procedure that would include reviewing past procedures.

Because some doctors are fucking arseholes who have no problem exploiting dying people so they can make a quick buck.

This is being downvoted, but you only have to look at the quacks selling (just one example, there are many more) mega-vitamin "cures" for cancer to see that some doctors are indeed fucking arseholes who have no problem exploiting dying people so they can make a quick buck.

One reason is that people's innate probability engine is broken, so they can't correctly figure out what's best for them (in expectation). This applies both to individuals and to civilization as a whole.

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