Law & Order: Victims of Reality Unit
So Prozac and its ilk prove to be, for the most part, about as clinically effective as a sugar pill. Which kicks loose an idea for a story that's been rattling around in my head for a few years now:
A man diagnosed with terminal cancer is beating the odds with the help of a new drug recently approved by the FDA. The tumors have stabilised, perhaps even receded a little; he has already lived well past his mean life expectancy. It's a breakthrough, a miracle — until a couple of statisticians from John Hopkins publish an analysis proving that the effect is pure placebo. Our patient reads the study. Within a month, he's circling the drain. Within two, he's dead.
The next of kin charge the authors of the paper, and the journal that published them, with negligent homicide.
Placebos work, you see. The brain can do all sorts of things to the body; sometimes it just needs to be tricked into generating the right happy chemicals. Medical professionals know as much: it may not be the cure so much as the belief in the cure that does the trick, and when you shatter that belief, you are knowingly stealing hope and health from every patient who heeds your words. You are, in a very real sense, killing them.
Do we have here a legitimate argument for the perpetuation of ignorance? Medical professionals do not generally discourage the use of prayer in dire circumstance. It does no harm, after all. (Actually there's some evidence that it does do harm; let's set that aside for the moment.) But when you know that placebo effects are real, and you go out of your way to disillusion some deluded flake who shows up on the ward convinced that her crystals and magnets will keep the tumors at bay... well, maybe education of the sick should be a criminal offense.
I'm just saying.
A man diagnosed with terminal cancer is beating the odds with the help of a new drug recently approved by the FDA. The tumors have stabilised, perhaps even receded a little; he has already lived well past his mean life expectancy. It's a breakthrough, a miracle — until a couple of statisticians from John Hopkins publish an analysis proving that the effect is pure placebo. Our patient reads the study. Within a month, he's circling the drain. Within two, he's dead.
The next of kin charge the authors of the paper, and the journal that published them, with negligent homicide.
Placebos work, you see. The brain can do all sorts of things to the body; sometimes it just needs to be tricked into generating the right happy chemicals. Medical professionals know as much: it may not be the cure so much as the belief in the cure that does the trick, and when you shatter that belief, you are knowingly stealing hope and health from every patient who heeds your words. You are, in a very real sense, killing them.
Do we have here a legitimate argument for the perpetuation of ignorance? Medical professionals do not generally discourage the use of prayer in dire circumstance. It does no harm, after all. (Actually there's some evidence that it does do harm; let's set that aside for the moment.) But when you know that placebo effects are real, and you go out of your way to disillusion some deluded flake who shows up on the ward convinced that her crystals and magnets will keep the tumors at bay... well, maybe education of the sick should be a criminal offense.
I'm just saying.
Labels: biology, just putting it out there...
16 Comments:
Actually, my understanding is that placebos don't have any effect on cancer, so your statisticians are probably safe. Placebos are good for pain, inflammation, and psychological conditions.
I read a while back about a study in which one individual seemed to have dramatic reduction in his tumors---which quickly grew back after he found out it was the placebo he was receiving.
I can't vouch for the accuracy of the story. Can't even recall what study it was or where I read it. Except that I stumbled across it while doing a little research related to faith-healing claims when I was debating a christian on the argument from miracles for the existence of God.
I worked for a company producing a supplement that helped joint pain but later was discovered to have a beneficial effect on people suffering depression. Later, a study showed that both anti-depressants and our supplement were as effective as the placebo, and our president at the time joked that maybe we should start selling sugar pills.
Of course, I just read an interview in New Scientists with a researcher whose studies showed that most clinical trials result in false results. Not falsified results, but in results that are incorrect based on unreliable testing methods. People, especially corporations producing the products, often cherry pick the studies that they want to be true since there are so many varied and contrary results out there.
On a similar note, I believe there have been studies that show religious people tend to live longer, happier lives. Should the atheists be gagged since questioning faith can lead to worsening health?
I was pretty surprised that scientist-you didn't spot the glaring flaws in this batch of bad science reporting. For instance, "It was not a study of SSRI antidepressant drugs: neither nefazodone nor venlafaxine are SSRI drugs."
"It did not show that these drugs have no benefit over placebo: it showed that they do have a statistically significant (”measurable”) benefit over placebo, but for mild and moderate depression that benefit was not big enough for most people to consider it clinically significant" (emphasis added)
Etc., http://www.badscience.net/?p=619
The placebo effect is powerful, but this study certainly is not proof that "Prozac and it's ilk [are]... about as clinically effective as a sugar pill"
Your perpetuation of ignorance thought experiment is interesting, though. It seems an extension of the once common practice to not tell the afflicted how dire their circumstances were, lest they lose hope.
Ignoring the whole question of whether or not placebos work, and whether telling someone they're on a placebo is moral or immoral, it's highly unethical because it can break the study in which the placebo is being given. Placebos are only given in two cases: during clinical trials of real drugs, and when doctors (or quacks) don't have a real treatment for the patient's condition, and hope to keep him \p\a\y\i\n\g from \l\o\s\i\n\g \f\a\i\t\h \i\n \m\e\d\i\c\i\n\e \o\r going to \a\n\o\t\h\e\r quack. As there are already moral concerns about the second case, I'll stick with the first.
In the case of medical trials, neither the treating doctor nor the patient is supposed to know which patients get the drug and which get the placebo. That's why it's called a "double-blind" test. If it's not double-blind, the knowledge of what treatment is being given can skew the statistics of the test by affecting the behavior of the patient or the actions of the doctor (either consciously or unconsciously).
In particular, if the doctor, or the pharma company paying for the test, has an economic or professional interest in the outcome of the test, double-blind prevents many kinds of cheating to make the outcome turn out the way they want it.
There is more at stake: instead of investing in therapy they send people away with a box of pills that do nothing, leaving people in need of help totally out in the cold, left to their own devices, untreated.
But hey, the farmaceutical industry needs to make a buck too right?
isadrone, it has also been shown that they only tend to publish those studies that prove their point and that the studies that show the pills make no difference are left unpublished. Just a coincidence I'm sure. ;)
Well, I don't think the charge would be negligent homicide. For one thing, it wasn't something the statisticians neglected to do that caused the man to come to harm, and for another, and arguably more important, the man wasn't in their care to begin with. Involuntary manslaughter would be a better charge.
Similarly, they are not killing him, the cancer is killing him. Cancer flips a shit every so often and decides to prolong the agony of a terminal patient before destroying him. Cancer is not nice. To say that a man diagnosed with terminal cancer suddenly took a downturn stands fairly well to reason on it's own.
Also, the Hippocratic oath (if statisticians were to take such things) would be ethically obligated you to inform a patient whether or not the witch-doctor concoction he was taking was valid or not, or if it was possibly dangerous, as it is their job to evaluate treatments.
Also, the man made no request to be denied such information.
Nevertheless, it is an interesting concept. However, beyond the realm of the hypothetical it would be dismissed as one of those cases that tie up the court's precious resources.
The state reserves the phrase "crime" for those acts that threaten the state itself. I don't see how letting flakes die early is such an act.
If you believe V.S. Ramachandran, it's possible in a person with MPD for one personality to have an allergy and the other(s) to be completely allergy free. He even mentioned a documented instance of pseudocyesis where a woman had every symptom of pregnancy -- excluding the actual baby. I'm talking lactation, swollen belly, waddling, weird food cravings, the whole nine yards.
Then you have Buddhist monks that can set themselves on fire and calmly sit while they burn to death.
A great many bodily functions seem to be only autonomic by default.
Sorry, I was responding more to the fiction-fodder part of the post than the cancer. Perpetuation of ignorance? Strictly on a case-by-case basis, I should think.
What a set of interesting ideas, thanks! So much to chew on!
Agree with isadrone: The article doesn't say that Prozac is as effective as a placebo, it says that it is not very effective for mild to moderate depression.
Important facts to mention: SSRIs make a dent in the problem of severe chronic depression, which can be fatal. These patients are not helped very much by talk therapy, because the underlying chemical imbalance is so great that the restructuring cognitions process can't get a foothold. (You have to be healthy enough to rewire your own brain via the talk therapy, and very ill people aren't up to it.)
Patients with milder problems seem to benefit from cognitive restructuring, but that's costly, hard, and so time-consuming. Doctors and patients alike decided that taking a pill was easy and cheaper. Plus, I knew people who just took it to be happier; they felt they weren't happy enough. *eye roll* As if happiness were the human condition!
In short, though: yeah, the cancer killed the guy, not knowing he was taking a placebo.
Sorry to go all off sub-topic, but since another sub-topic of this blog is the writing, I had to say this:
Read The Eyes of God in a short story collection I bought from Dave Edelman at a reading he gave?
SPOILERS*****
That was a gratifying read. Neat!
It was exhilarating, kind of a short, sober, tragic Portnoy's Complaint - what is going on in a guy's head as he waits in line at airport security, the same sense of how he is killing mental time until his gut-spilling appointment with a God-like authority figure.
It was such controlled chaos, exactly as it should feel for such a man in such a circumstance, the racing thoughts, the sense of ideas crammed together.
I liked the conflation of the priest with God with the gate as the man talks to himself. I liked his vehement internal declaration that he has no need of God, because it is like believing in invisible friends, the procedes to talk to the dead priest as if he were an invisible friend. (Nice touch, that.)
I liked his contradictory love and hate for the priest, how he wants to dance on his grave, but also honor him, and symbolically this is also his feeling about God and a society which disapproves of his true self, the potential child molester.
Good tight layering, and good build in suspense. I just got the sense you had real *control* over the elements in the story. You certainly wrote the hell out the short story genre in this one, buddy.
I won't ask, but if you said you knew someone who had been molested, I'd believe you. This puts a finger on the internal processes it creates.
Off topic as well, did anyone read this?
http://www.wired.com/science/planetearth/news/2008/02/bacteria_clouds
I think Watts mentioned someone (was it a university in Israel?) doing research relating to his story "Nimbus", looks like its starting to get recognition. Once again the future is predicted with the power of post-apocalyptic fiction.
FUCK FUCK FUCK FUCK FUCK.
I wrote responses to these comments. Days ago. I could have sworn I even saw them posted, but I come back here and there's no sign of me having weighed in on anything. Which will not do.
So, trying once again...
Mike said...
Actually, my understanding is that placebos don't have any effect on cancer, so your statisticians are probably safe. Placebos are good for pain, inflammation, and psychological conditions.
Yeah, maybe cancer was a bad example for the thought experiment. But mood disorders can drive people to suicide too, so make that switch and you end up at the same place (although granted, the study did show a significant supraplacebo effect at the suicidally-depressed end of the scale...)
John Henning said...
On a similar note, I believe there have been studies that show religious people tend to live longer, happier lives. Should the atheists be gagged since questioning faith can lead to worsening health?
Depends. Do religious people live longer because of the inner peace and joy that religious belief brings, or simply because the nonreligious are more frequently burned, stoned, and hung by the religious types, thus reducing their expected lifespan?
isadrone said...
I was pretty surprised that scientist— you didn't spot the glaring flaws in this batch of bad science reporting.
Dude, I haven't been a real scientist for a while now. And I was never a neuropharmacologist.
For instance, "It was not a study of SSRI antidepressant drugs: neither nefazodone nor venlafaxine are SSRI drugs."
Did not know that. (Did not say it either, actually.) But I don't think it changes the central point I was making.
"It did not show that these drugs have no benefit over placebo: it showed that they do have a statistically significant (”measurable”) benefit over placebo,
Uh, "statistically significant" is not the same thing as "measurable". In fact, the whole reason that statistics exists is to determine whether measurable differences are meaningful.
but for mild and moderate depression that benefit was not big enough for most people to consider it clinically significant" ... The placebo effect is powerful, but this study certainly is not proof that "Prozac and it's ilk [are]... about as clinically effective as a sugar pill"
I disagree. I heard an interview with one of the authors of that paper a few days back; their meta-analysis was based not only on published results, but also on unpublished results on file at the FDA (they had to file a FoI request to get access to those). Meaning that whereas other studies were limited to data that the industry itself had cherry-picked, these guys had access to the whole available data set. And what they found was that while both placebo and drug had a significant effect, and while the drug's impact measured higher than the placebo's, the difference between the two was statistically insignificant (i.e., it could easily have arisen through random chance). Meaning that there was no difference, clinically.
Granted, the difference was significant at the extreme end of the scale, amongst people who were really depressed. But that demographic is only a small fraction of the total SSRI (or whatever)-using population — hence my statement that such drugs are " for the most part" about as clinically effective as a sugar pill (a caveat I see you ellipsesed out when you quoted me).
It's worth repeating, though, that this is not to say the drug treatments weren't effective— rather, it was the treatment aspect, not the drug per sé, that made the difference. The thing that did the trick was the patient's faith in the cure.
SpeakerToManagers said...
Ignoring the whole question of whether or not placebos work, and whether telling someone they're on a placebo is moral or immoral, it's highly unethical because it can break the study in which the placebo is being given. Placebos are only given in two cases: during clinical trials of real drugs, and when doctors (or quacks) don't have a real treatment for the patient's condition, and hope to keep him \p\a\y\i\n\g from \l\o\s\i\n\g \f\a\i\t\h \i\n \m\e\d\i\c\i\n\e \o\r going to \a\n\o\t\h\e\r quack... In particular, if the doctor, or the pharma company paying for the test, has an economic or professional interest in the outcome of the test, double-blind prevents many kinds of cheating to make the outcome turn out the way they want it.
But we're talking about a third case right here: once the drug has already been tested and approved. The question now is no longer "are they harmful", or even "do they work", but rather, "Do they work as well as...", so some of those ethical concerns aren't as strong (granting the admittedly-unlikely premise that "ethics" play any role in The Pharm's R&D machinations to begin with, of course...)
But yes, in any event, double-blind is always good.
Nicholas said...
Well, I don't think the charge would be negligent homicide. For one thing, it wasn't something the statisticians neglected to do that caused the man to come to harm, and for another, and arguably more important, the man wasn't in their care to begin with. Involuntary manslaughter would be a better charge.
Yes, that makes more sense.
Similarly, they are not killing him, the cancer is killing him...Also, the Hippocratic oath (if statisticians were to take such things) would be ethically obligated you to inform a patient whether or not the witch-doctor concoction he was taking was valid or not, or if it was possibly dangerous, as it is their job to evaluate treatments.
But doesn't that oath come right out of the gate with "First, do not harm"? And in the case where placebos are effective, doesn't informing the patient about reality violate that oath?
OK, that was as far as I'd got previously in my Amazing Disappearing Metacomment. Now I'll post it again before proceeding, just to be on the safe side...
OK. Worked that time. Onward.
razorsmile said...
If you believe V.S. Ramachandran, it's possible in a person with MPD for one personality to have an allergy and the other(s) to be completely allergy free. He even mentioned a documented instance of pseudocyesis where a woman had every symptom of pregnancy — excluding the actual baby. I'm talking lactation, swollen belly, waddling, weird food cravings, the whole nine yards.
I have got to read more of that guy. I've checked out a couple of his papers, and I'm vaguely aware of the stuff he's reported (that one-off in Blindsight where only one persona in the Gang of Four gets radiation sickness after a trip to Rorschach? That's a nod to VSR), but I've yet to read his books. Which I really should, especially since Elisabeth Bear claims they prove me wrong about everything...
bec-87rb said...
Agree with isadrone: The article doesn't say that Prozac is as effective as a placebo, it says that it is not very effective for mild to moderate depression.
Right. But again, that's the group that comprises the bulk of Prozac users.
SSRIs make a dent in the problem of severe chronic depression, which can be fatal. These patients are not helped very much by talk therapy, because the underlying chemical imbalance is so great that the restructuring cognitions process can't get a foothold. (You have to be healthy enough to rewire your own brain via the talk therapy, and very ill people aren't up to it.)
That makes perfect sense in a sane universe. But given the kind of weird and radical persona-specific manifestations that razorsmile cited up above, I gotta wonder if there's a lot that "mere" talk (which implies certain types of cognition, which implies certain inevitable neurochemical changes, which implies...what, exactly?) couldn't accomplish if we could just get a handle on the mechanism. The protagonist of my "evil Jew" story describes talk therapy as having "all the precision of a drunkard stomping on the floor, trying to move glasses on the bar with the vibrations of his boot," and it is, kind of— but those vibrations are real, dammit, and the glass does move on the counter, and sometimes it even moves to a healthier place. Maybe we just need more precision. Maybe we just need better words.
I find this stuff increasingly scary.
In short, though: yeah, the cancer killed the guy, not knowing he was taking a placebo.
Granted. And if you snatch a life preserver away from a nonswimmer in deep water, it's drowning that kills him, not you. But you're still guilty of something, I reckon.
Read The Eyes of God in a short story collection I bought from Dave Edelman at a reading he gave ... That was a gratifying read. Neat!
Why, thank you. That was a really tough story for me to write— not because of the subject matter per sé, but just because a guy standing in line thinking to himself for four thousand words is not intrinsically dramatic. I tried bringing in all sorts of stuff — a girlfriend who'd killed her abusive father, police manhunts, all that shit — and it just lost all focus. So I went back to the guy standing in line, and hoped I could pull it off. Even after Solaris bought it, I remained unconvinced that I had. It's still just a guy standing in line. So I'm glad and relieved that it it worked for you.
I hadn't realised the book was out yet. Kind of snuck up on me.
Jeremy Ruhland said...
Off topic as well, did anyone read this?
http://www.wired.com/science/planetearth/news/2008/02/bacteria_clouds
I think Watts mentioned someone (was it a university in Israel?) doing research relating to his story "Nimbus", looks like its starting to get recognition. Once again the future is predicted with the power of post-apocalyptic fiction.
YES!!!! This gets its own damn blog entry, is what this does. Thanks for picking up on that!
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