Back Off Medical Paternalists—People Can Handle the Truth

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Ignorance is bliss. Or so some physicians and bioethicists seem to think when it comes to genetic testing. The New York Times is reporting a new study which finds:

A genetic test that can find an increased risk of Alzheimer's disease does no psychological harm to people who take it, even if they test positive for a risky gene, a new study finds. 

The results challenge views long held by the medical establishment, which has discouraged people from being tested, arguing that the test is not definitive, that it may needlessly frighten people into thinking a terrible disease is hanging over them and that testing is pointless anyway because there is no way to cure or prevent the dementia caused by Alzheimer's.

"There has been this extraordinary worry that disclosing risk was going to devastate people," said Dr. Robert C. Green, a professor of neurology, genetics and epidemiology at Boston University, and the lead author of the study, which is being published on Thursday in The New England Journal of Medicine. "This has upended those assumptions."

Of course, the "assumptions" were made by a self-appointed medical priesthood who think that the little people can't handle "occult" genetic information. Knowing whether or not I carry the genes that increase my risk of Alzheimer's is one of the chief reasons I took a genetic screening test ( the good news is I don't). 

See my column in which I consider the idea that if there were a test that could tell you the exact day you would die (barring accidents), would you take it? I would.

See whole New York Times article on what they researchers were testing and what they found  here.

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  1. I take great pleasure in the fact that every opinion I’ve ever heard from any self-proclaimed “Bioethicist” is wrong.

  2. Bioethics seems to me to be pretty simple, for the most part. Respect everyone’s autonomy and right to decide for themselves, and you’re about 95% of the way home.

    “Informed consent” relies, of course, on giving the patient full information.

    One of the really interesting areas, to my mind, involves when the competing autonomies of the patient and the provider collide (such as when a terminal patient wants futile care that providers don’t want to give). The European model for resolving this is (surprise), what the doctor says, goes. The American model generally breaks ties in favor of the patient.

  3. if there were a test that could tell you the exact day you would die (barring accidents), would you take it?

    Life-Line, Robert A, Heinlein, 1939.

    Yeah, I would.

  4. R C Dean

    Actually it would not surprise me at all if the scenario is more often the opposite of what you propose.

    ie, a terminal patient does not want futile care that providers are determined to give.

    Doctors tend to take their life-saving role seriously, and this is generally a very good and right thing to my mind.

  5. “if there were a test that could tell you the exact day you would die (barring accidents), would you take it?”

    Yes, and there’d be hell to pay the day before.

  6. if there were a test that could tell you the exact day you would die (barring accidents), would you take it?

    Of course. I wouldn’t want to waste my time on earth making longer-term plans that wouldn’t pay off. And, you could do all sorts of fun things in the last bit without effectively having to pay for them.

  7. The American model generally breaks ties in favor of the patient.

    Is it the model of medicine or the cultural sanctity of life (the type of beliefs kind that oppose death with dignity acts, and makes attempts to kill oneself a crime?)

    Also, when it comes to “futile” care/treatments in the US, isn’t mostly about an ability to pay? Ties break in favor of the patient when the patient has money to pay for futile care (or a charity is willing to help them out) or if their insurance company is willing to pay for it, no?

  8. Actually it would not surprise me at all if the scenario is more often the opposite of what you propose.

    ie, a terminal patient does not want futile care that providers are determined to give.

    In my experience, that rarely if ever happens, for one simple reason:

    It is a crime (assault, actually) for a health care provider to force care on a patient without the patient’s informed consent. At least in the US, if a patient (or their surrogate decision-maker) declines life-sustaining treatment, it is pulled.

    Seriously, Isaac, I deal with this stuff every day. The problem is emphatically not doctors pushing futile care on patients. Its patients (or, more often, their families) demanding futile care that doctors don’t want to give.

  9. if there were a test that could tell you the exact day you would die (barring accidents), would you take it?

    Assuming that there is no margin of error (or at least a reasonable one — like they could pinpoint within a 6 month window when I would die) I would.

    But not if there was a significant margin of error. You could wind up making bad decisions you might have to live with (for a significant period of time anyway)

  10. Also, when it comes to “futile” care/treatments in the US, isn’t mostly about an ability to pay? Ties break in favor of the patient when the patient has money to pay for futile care (or a charity is willing to help them out) or if their insurance company is willing to pay for it, no?

    Absolutely not. Ability to pay is not, repeat most emphatically not, an issue.

    Refusing life-sustaining treatment to a patient because they are indigent will get your license pulled, all your money taken away, and could well get you jailed. It simply doesn’t happen.

    What is far more common is indigent patients who linger on life support forever, costing hundreds of thousands, because their families know its all free to them, and are too dysfunctional to let the patient go already.

  11. It is a crime (assault, actually) for a health care provider to force care on a patient without the patient’s informed consent. At least in the US, if a patient (or their surrogate decision-maker) declines life-sustaining treatment, it is pulled.

    Tell that to Michael Schiavo. Then duck.
    I won’t even go into mental treatment facilities.

  12. Fair enough, R C, I stand, not actually corrected, but enlightened.

    I actually did not mean that care was forced on patients. But as I said, doctors are trained to save lives and, thankfully, they take that mission seriously.

    I suppose part of the problem is the question of when care actually becomes futile.

    And you are absolutely right about the “ability to pay” canard. It is something that is often alleged but rarely demonstrated. There were those cases of bums being dumped on Skid
    Row in CA a few years ago but that seems to be an aberration, and possibly a story that has two sides.

    However stories rage in Britain about patients dying in America for want of medical care which considering the state of some of their hospitals is something of a joke.

  13. I would want to know. But I would also like to know whether if I gave up running everyday and eating well for ice cream, booze, weed, bacon, and partying late would make any difference. and if so, how much? If all this damn running is only going to give me a couple of weeks, I want to go buy a few liters of Jaegermeister.

  14. J sub, you’re getting at the issue of who is, or should be, the surrogate decision-maker for patients incapable of giving informed consent (a whole different issue).

    The Schaivo case was almost entirely about who should have decision-making authority as her surrogate, not whether the surrogate’s wishes should be followed.

    The various convolutions of that case stemming from direct state involvement should serve as a warning on the grotesque consequences of any deviation from the standard that “what the patient (or her surrogate) says, goes”, which is the standard followed pretty much everywhere.

    Texas actually has a law allowing health care providers to withdraw futile life-sustaining treatment over the objections of the family after all kinds of due process, but I am not aware of any law anywhere that allows life-sustaining treatment to be forced over the objections of the patient/surrogate. Even the law passed on Florida during the height of the Schaivo idiocy that allowed Gov. Bush to intervene and force the provision of care was overturned as unconstitutional.

  15. The Schaivo case was almost entirely about who should have decision-making authority as her surrogate, not whether the surrogate’s wishes should be followed.

    That’s bullshit and you know it. The spouse is next of kin.

    This was about the religious right trying to further their “pro-life” agenda and finding sympathetic patsies in Terri’s parents.

    But you knew all that, didn’t you?

  16. There may be no way to cure or prevent the dementia caused by Alzheimer’s at present.

    I’m willing to bet that a large number of people knowing they have the gene would do wonders for funding research into finding a way.

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  18. The Schaivo case was almost entirely about who should have decision-making authority as her surrogate, not whether the surrogate’s wishes should be followed.

    That’s bullshit and you know it. The spouse is next of kin.

    Yes, he was. And his fitness to be the surrogate decisionmaker was the vehicle for the right-to-lifers to promote their agenda. They were trying to substitute someone else as the surrogate.

    I will grant you this: while the legal arguments were mostly about who should make the decisions, the subtext was definitely what decisions should be made.

  19. I’d want to know. It would probably help me relax. Now that I’m a mother, I spend a lot of wasted emotional worry over my own inevitable demise. If I knew I had plenty of time (or not), I could stop worrying about it and start preparing.

    Of course, I should be prepared anyway. Better get that will written.

  20. In Ikiru (To Live), the protagonist has stomach cancer which will kill him within six months. In the movie, the doctors tell him he only has an ulcer (as was actual medical practice in Japan at the time). The idea was that the person would be so incapacitated by the knowledge they are about to die, they would be unable to function. This seems like a similar, and equally pointless, mindset.

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