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Comment by jamesrom | Hacker News Reader

Then here's an idea: instead of hiding that information, you can explain it to the patient.

You have no authority to treat your patient like a child.

disclosing information is not a medically neutral act. Knowing you have a medical condition can create a great deal of anxiety and anguish and prompt lots of tests. If the result of all those tests and anxiety is "no action indicated," you've basically given your patient a condition that reduces their quality of life for no upside.

I once had a misdiagnosis of an incurable illness that I didn't actually have, and the stress of dealing with that caused me to develop another, very real medical condition that took a year to get under control.

Hypothetically (totally made up numbers), if a positive result on the test means there is 1/10000 chance you have cancer, and negative result means a 1/20000 chance, with the test also having a 1/1000 chance of giving the patient an adverse reaction, i think the questions most patients would ask is why was the test run in the first place?

We're not talking about hiding information, we're talking about not looking for it in the first place. Information that is costly to acquire but not actionable once acquired.

in some cases the knowledge itself is a curse. These commenters mostly have no clue what they’re talking about and it shows.

My spouse found out they had a benign brain tumor, an accidental discovery while doing a brain scan for some other reason. She now has to get annual scans done to make sure the size doesn’t change. Guess what? It hasn’t changed in 5 years.

You might say “better safe than sorry!” To that i say - bullshit. It’s caused her lots of unnecessary stress and anxiety. EVERY year she goes back to the testing center and stresses out about if it’s changed in the last year. She sleeps poorly sometimes because of the anxiety, etc. Knowing every microscopic issue within your body is not always a net benefit! Quality of life matters too, not just longevity.

I think it really depends on the type of cancer. Actionable information is the most useful information.

Nocebo [1], a well know/documented phenomenon, can be very damaging.

[1] https://en.wikipedia.org/wiki/Nocebo

On the other hand, the placebo effect works even when the placebo is clearly labelled "placebo". So I guess there's potential to tell people needlessly disconcerting facts and then take the edge off with reassuring bluster and functionless comforts.

I believe you’d have a very different opinion if the size did change and she had the opportunity to treat it at a very early stage.

I’ve thought about this.

According to this source, “Approximately 72% of all brain tumors are benign”. https://braintumor.org/brain-tumors/about-brain-tumors/brain...

So my wife has gone through all this extra stress to MAYBE catch a cancerous tumor (28%). That’s assuming it grows large enough to impact her before she dies naturally. And I see that the survival rate of some brain tumors, even if found very early, is very poor (5-10% for some tumors, like glioblastoma).

Lots of “what if’s” here. And for what? All i’m arguing is, knowledge is not always actionable, and what’s not actionable can keep you up at night.

The point i’m making is, we should not be trying to pursue a life of 0 risk and perfect decisions. Life is filled with risk (and good and bad luck). That’s just life.

It depends on your personality or worldview. Some people would be much more comfortable lowering their chances of “what ifs” than leaving it all to fate.

i agree with you. If a patient expresses that sentiment to their doctor, they should act accordingly and order the extra screening. At the end of the day it should be a conversation with your provider.

There should definitely be an honest discussion about pros and cons. And not just the physical, but the mental aspect as well.

Just like the opinion would be different if the size didn't change but she embarked in a risky treatment that left her permenantly disabled or dead.

Hindsight is twenty-twenty. If you take the wrong course of action of course you are going to be upset. But that goes for both possible choices. Its not like the choice is ignore vs take some safe but possibly unnessary action. Both choices could kill you.

This is a "why don't you just" answer. The reason the establishment does this is that we know the outcome of telling people is worse than not telling them. This is an expensive lesson learned over over a century of medical treatment.

Outside of an emergency I would prefer "first, fully inform" to "first, do no harm", acknowledging the potentially mortal cost.

What if you had stats that showed that (the fully inform) policy produced more negative results?

Would you insist on fully informing if the outcome was, on average, worse? If so, why?

Also, if the outcome is worse by informing, doesn't that imply a violation of "first, do no harm"? Which, to be fair, the OP says they wouldn't prioritize...

Depends on how you interpret: "First do no harm". Is that an obligation to minimize the harm to an individual patient? Or is the goal to maximize the health of many patients? Like I've said elsewhere, medical reasoning is subtle.

Yes, because I have met many doctors whose judgement I profoundly mistrust, and prefer my own. Sometimes their whole paradigm is flawed, but sometimes they're just not informed about my own values. And I would rather die by my own misjudgment than theirs.

OK good luck when you get real sick! Because that's what you'll be depending on.

I'm an old guy, it's happened several times. The last time, a surgeon removed a tumor, found that it was malignant ... and then told me that it was no big deal, it was a kind of cancer that would not have caused serious problems. She said if she had to get cancer she'd pick this kind. I wish she had told me that before the surgery. I may have had it anyway, but maybe not. Wouldn't you value being fully informed more after that? Surgeons have as much of a conflict of interest when selling their own services as anyone else.

I'm not sure what your point is. This discussion is about medical researchers making decisions on thousands or millions of patients in aggregate... what you're describing is a common thing (don't know how bad a tumor is until it's removed).

The doctor didn't know that before removing the tumor (almost certainly; the alternative is medical fraud).

Doctors going into uber salesman mode selling dangerous surgery is super common. So very common among heart surgeons it’s comical. Point is, blindly trusting doctors and their judgements will in all likelihood just turn you into a sickly perma patient.

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