A Belgian man diagnosed as being in a coma for 23 years was actually conscious the whole time.

November 23, 2009 4:33 AM

"I shall never forget the day when they discovered what was truly wrong with me – it was my second birth. Rom Houbens was simply paralysed and had no way to let doctors caring for him what he was suffering. Only the re-evaluation of his case at the University of Liege brought to light that Houben was only paralysed all these years. Hi-tech scans showed his brain was still functioning almost completely normally.
posted by njbradburn (94 comments total)

...
posted by vectr at 4:39 AM on November 23, 2009

Nothing goes with breakfast like a post about LITERALLY THE WORST THING I CAN IMAGINE. Thanks eversomuch njbradburn.
posted by Horace Rumpole at 4:47 AM on November 23, 2009 [31 favorites]

Sounds like Locked-in syndrome.
posted by raygirvan at 4:47 AM on November 23, 2009

Well, that's the most horrible thing I've ever heard of.
posted by two or three cars parked under the stars at 4:50 AM on November 23, 2009

I think this is great for Mr. Houbens and others like him. On the other hand, I think it is terrible for people who's families are delaying pulling the plug on their vegitative state because of some absolutely remote chance that they are still in there, when they are, in fact, not.
posted by Pollomacho at 5:25 AM on November 23, 2009 [1 favorite]

isn't that negligence on a grand scale? It's my understanding that comas have a particular signature on EEG, which is not exactly "advanced scanning".
posted by polyglot at 5:31 AM on November 23, 2009 [1 favorite]

Horrific, I agree. Dalton Trumbo's Johnny could at least tap out a message from the start. I'm scouring for more news on this man who, at 46, has a whole life ahead of him. There's a lot of potentially misdiagnosed vegetative states out there who will be examined further now. There's something of an Hallelujah story in there somewhere.
posted by njbradburn at 5:33 AM on November 23, 2009

I think I shuddered so hard reading that I damn near knocked my monitor over. ugghhhhhh that poor poor man.
posted by Uther Bentrazor at 5:55 AM on November 23, 2009

Good thing we don't have death panels.
posted by Obscure Reference at 5:55 AM on November 23, 2009 [1 favorite]

There was a 60 Minutes piece yesterday on the large numbers of brain-injured soldiers returning from Afghanistan and Iraq. Unlike the OP, there is definitely brain impairment and there the struggle is to try to reach and bring out whatever consciousness and personality they can. And of course they also require 24/7 support.

Heartwrenching stuff. Glad to hear that Mr Heubens was "found".
posted by Artful Codger at 6:05 AM on November 23, 2009

Pollomacho-- to be fair, it's not really terrible for the actual people in a vegetative state, as they're gone gone. It's only terrible on an abstract level when you play the 'oh, if I were in that situation' game.

The real pain (or help) is on the families with the hope that their loved one will pull through, when there is none. Oh, and the resources the hospitals have to spend on keeping the shell alive.
posted by Static Vagabond at 6:18 AM on November 23, 2009 [1 favorite]

Totally fake. He's just acting out a Metallica video.

Yes, I'm kidding.

And I know the video is based on a film. Which in turn in based on a story. Though I'm ig'nant enough to forget the name and too lazy to look it up.
posted by clvrmnky at 6:32 AM on November 23, 2009

*/ chuckles at clvrmnky
posted by njbradburn at 6:36 AM on November 23, 2009

Pollomacho-- to be fair, it's not really terrible for the actual people in a vegetative state, as they're gone gone. It's only terrible on an abstract level when you play the 'oh, if I were in that situation' game.

He said it was bad for their families.
posted by delmoi at 6:41 AM on November 23, 2009

Well, that's the most horrible thing I've ever heard of.

Ditto that. Completely aware for over twenty years and just lying there?? How did he not go completely insane? I sure am glad he has his life back, but oh man, what a road to travel to get there.
posted by LooseFilter at 7:10 AM on November 23, 2009

It's my understanding that comas have a particular signature on EEG, which is not exactly "advanced scanning".

Looking at his published work, it seems like they've been using fMRI (functional magnetic resonance imaging) to establish whether the patients are really in a PVS.

I listened to a podcast with this or a very similar story a few months ago. This American Life or (probably) Radiolab (??)
posted by gaspode at 7:14 AM on November 23, 2009

Dreadful, dreadful story. I would have gone insane, or just given up and died.
posted by orange swan at 7:34 AM on November 23, 2009

Misdiagnosis of PVS did hit the journals, news and blogosphere several months ago. Staggering statistics, but I am energized by this story! So much life recovered...

I know that it is none of my business what this man does with the rest of his life, but I'm in awe and hope that someday he shares his story.
posted by njbradburn at 7:41 AM on November 23, 2009 [1 favorite]

I thought you could diagnose PVS from a videotape? Go figure..
posted by vivelame at 8:06 AM on November 23, 2009

This story reminded me of the Stephen King short story The Jaunt.
posted by Simon Barclay at 8:14 AM on November 23, 2009 [2 favorites]

All that time I just literally dreamed of a better life. Frustration is too small a word to describe what I felt.

ugh.
posted by mistersquid at 8:18 AM on November 23, 2009

How did he live?
posted by From Bklyn at 8:29 AM on November 23, 2009

Can anyone find an online copy of the Stephen King story Simon Barclay mentions, The Jaunt? I'm dying to read it.
posted by lizzicide at 8:53 AM on November 23, 2009

Marcia Muller's latest Locked In has her detective, Sharon McCone helping to solve the mystery of who shot her while suffering from locked-in syndrome.
posted by agatha_magatha at 8:59 AM on November 23, 2009

Gah!
posted by ignignokt at 9:00 AM on November 23, 2009 [3 favorites]

He could live through the small things. Mark the hours by the nurses who come and go. Listen to the sounds and conversations around him. Dream, imagine. Curiously, the brain is capable of entertaining itself without TV.
posted by stbalbach at 9:01 AM on November 23, 2009

I find it nearly impossible to believe that he did not go batshitinsane.
posted by five fresh fish at 9:06 AM on November 23, 2009

stbalbach: "He could live through the small things. Mark the hours by the nurses who come and go. Listen to the sounds and conversations around him. Dream, imagine. Curiously, the brain is capable of entertaining itself without TV."

Curiously, some people don't consider marking hours living.
posted by pedmands at 9:08 AM on November 23, 2009 [2 favorites]

Delmoi- my pedantic hat may be on a little tight, but he did say: "I think it is terrible for people who's families are delaying pulling the plug on their vegitative state

Which at least to me, seems to link the 'people' with the possessive description of the vegetative state.

Which I think is common, in the few cases that have hit the media, you do see arguments of 'just let them die, they've suffered enough'. Which is understandable, I think it's very hard to not mirror yourself into their position, we're all wired for empathy to others, whatever their condition.
posted by Static Vagabond at 9:10 AM on November 23, 2009

What an absolute nightmare.

I'm curious: there have been studies showing significant detrimental effects of long-term social isolation in humans and animals, and any number of anecdotes supporting that with prisoners. In some cases, sanity is thought to be significantly impaired. How would locked-in syndrome or misdiagnosed PVS vary in their effects, especially in long-term cases of a year or more?
posted by notashroom at 9:11 AM on November 23, 2009

God, talk about "I have no mouth and I must scream" territory.
posted by Solon and Thanks at 9:21 AM on November 23, 2009 [2 favorites]

If this happened to me, my dad would probably sit by my bedside and talk endlessly about his job and the lawn and how his back hurts and...AAAHHHHHH!!!!!
posted by orme at 9:27 AM on November 23, 2009 [6 favorites]

How would locked-in syndrome or misdiagnosed PVS vary in their effects, especially in long-term cases of a year or more?

Would the difference be that in social isolation cases, the subject is kept away from any interaction with human beings? And Mr. Houbens, thought unable to make himself heard, could hear, perhaps even see, what was happening around him?
posted by jeanmari at 9:31 AM on November 23, 2009

Pollomacho: “I think this is great for Mr. Houbens and others like him. On the other hand, I think it is terrible for people who's families are delaying pulling the plug on their vegitative state because of some absolutely remote chance that they are still in there, when they are, in fact, not.”

I disagree. This could be very good for those cases. At the very least, it demystifies the situation; "he looks like he's just in a coma, so he might have mental activity but we just can't know" can be replaced by "we have done an EEG (or whatever 'high-tech brain scan' they're talking about in the article) so we know his brain activity has stopped." One could worry that this will just lead to hope and/or trepidation in the minds of people who are ideologically hesitant to pull the plug in cases where that's the right thing to do, but I doubt it, since the case doesn't offer blind hope but rather a more rigorous and complete scientific method of detecting mental functionality. The article claims that the doctor who recognized that this man was conscious has already published a paper on it; I think that's a net benefit, not a net loss.
posted by koeselitz at 9:53 AM on November 23, 2009 [1 favorite]

[lizzicide: check yr email. I sent you a PDF copy.]
posted by koeselitz at 10:02 AM on November 23, 2009 [1 favorite]

I have to say that I smell a rat in this story somewhere. I don't know where, but the details don't add up. They describe him as both failing basic sensory and motor response tests, while also having sufficient motor control to "tap" messages and read books. (I can't see how they're implying he'd do that without some control of his ocular muscles; the focal point in your visual field is actually much smaller than most people realize.) They say he was being scored "incorrectly" on those simple tests - for 25 years, presumably by many different people? And if his brain were functioning "completely normally" then there wouldn't be a need for a "hi-tech" scan; a routine EEG would pick up that activity, and just about any hospital in the industrial world should have an EEG machine. If the neurological details are right, then this isn't a miracle or even a breakthrough, it's malicious medical negligence. If there is no malicious medical negligence, then the neurological conditions they're describing in the article should not be possible. No mention of where the paper on this case is published, no comment from anyone at the hosptial(s) where he has spent the last 25 years. I smell glurge.
posted by el_lupino at 10:08 AM on November 23, 2009 [14 favorites]

He's published a whole heap of papers this year alone on the phenomenon.
posted by gaspode at 10:17 AM on November 23, 2009

Would the difference be that in social isolation cases, the subject is kept away from any interaction with human beings? And Mr. Houbens, thought unable to make himself heard, could hear, perhaps even see, what was happening around him?

jeanmari, I think that could be a significant factor of difference, particularly the frequency of exposure to other people (see my anecdote link for more on that, as "isolation" can involve some exposure to captors/keepers), but in either case, the individual is unable to interact with others for a significant period of time. I guess at least part of what I'm asking is how much of the observed effects are due to lack of exposure to others and how much to an inability to interact with others.
posted by notashroom at 10:18 AM on November 23, 2009

What el_lupino said. The story as filtered through mainstream media doesn't add up. If anyone has a better source for this story, please share it.
posted by drpynchon at 10:20 AM on November 23, 2009 [1 favorite]

el_lupino: “They describe him as both failing basic sensory and motor response tests, while also having sufficient motor control to "tap" messages and read books. (I can't see how they're implying he'd do that without some control of his ocular muscles; the focal point in your visual field is actually much smaller than most people realize.)”

You are wrong. This story has been widely reported in the media. A better treatment of it is in the Guardian, which actually seems to have interviewed the doctor responsible for the discovery that this man was conscious.

Houben is being cared for at a facility near Brussels and now communicates via a computer with a special keyboard activated with his right hand, which is capable of minimal movement. He said his body was paralysed when he came round after his accident. Although he could hear every word his doctors spoke, he could not communicate with them.

Steven Laurys is the person who discovered he was conscious, and who has apparently written a paper about it, though I can't find it. As I said, this has been reported elsewhere as well. Faking this would be damned difficult, and would apparently involve, at the very least, deceiving a whole lot of reporters.
posted by koeselitz at 10:22 AM on November 23, 2009

I keep thinking of the conversations his family members must have had around him thinking he was incapable of hearing them. Wow.
posted by Joey Michaels at 10:26 AM on November 23, 2009

Thanks, gasplode; via PubMed, I'm pretty sure the paper Steven Laurys has published on the method he used to detect Rom Houbens' conscious state is called "The nociception coma scale: A new tool to assess nociception in disorders of consciousness." For those interested, here is a PDF of that paper. It does not appear to discuss directly this particular case, however.
posted by koeselitz at 10:28 AM on November 23, 2009

el_lupino: “And if his brain were functioning "completely normally" then there wouldn't be a need for a "hi-tech" scan; a routine EEG would pick up that activity, and just about any hospital in the industrial world should have an EEG machine. If the neurological details are right, then this isn't a miracle or even a breakthrough, it's malicious medical negligence. If there is no malicious medical negligence, then the neurological conditions they're describing in the article should not be possible. No mention of where the paper on this case is published, no comment from anyone at the hosptial(s) where he has spent the last 25 years. I smell glurge.”

I don't think this is actually a correct impression of what an EEG machine does. My understanding as a layman is that there are always neurons firing for the EEG machine to detect, and that an EEG can't simply and directly diagnose coma states; the particular wave-pattern which is read as indicating coma state is designated as Alpha, but children, for example, usually read as Alpha, as well as normal adults in certain circumstances or situations. What's more, Laurys' argument thus far in all of this is that the initial diagnosis of "unconscious" almost always colors every other diagnosis made thereafter. Personally I'm a bit taken aback that it sounds like EEGs, which seem useful even though they're not a magic bullet, are hardly ever used, and the 1974 Glasgow Coma Scale prevails instead.
posted by koeselitz at 10:38 AM on November 23, 2009 [1 favorite]

Sorry; the paper I listed above is relevant and recent (within the month) but an even more relevant and recent paper of Laurys' is his paper on "Neuroimaging after Coma." If anyone would like to see it, here is a link to the PDF. el_lupino, I think this paper answers some of the questions you're having about what exactly was the problem with using EEG and what the reporters translated as a "high-tech brain scan." Apparently it's actually a new way of reading an MRI and fMRI.
posted by koeselitz at 10:48 AM on November 23, 2009 [1 favorite]

[link here]
posted by koeselitz at 10:48 AM on November 23, 2009

koselitz: You are wrong. This story has been widely reported in the media. A better treatment of it is in the Guardian, which actually seems to have interviewed the doctor responsible for the discovery that this man was conscious.

Easy there. This is the first I (and most of us) are hearing of it, and I was saying that the account posted here didn't add up. If there is a better account that makes more sense, then that would make more sense.

koselitz:I don't think this is actually a correct impression of what an EEG machine does. My understanding as a layman is that there are always neurons firing for the EEG machine to detect, and that an EEG can't simply and directly diagnose coma states; the particular wave-pattern which is read as indicating coma state is designated as Alpha, but children, for example, usually read as Alpha, as well as normal adults in certain circumstances or situations.

Right, but again, going by the article in the FPP, that's not consistent with a "completely normal" fully conscious adult brain. If the Guardian link is right and more informative, then the story is less one of medical marvel and more one of great medical negligence or indifference.
posted by el_lupino at 11:04 AM on November 23, 2009

Koeselitz - I botched your name twice didn't I? Genius. I'm going to go lie down in a cool, dark place for an hour.
posted by el_lupino at 11:06 AM on November 23, 2009

This story has been widely reported in the media. Not exactly. At 0500 Eastern I read the Guardian piece and was immediately Googling looking for more. I'm sort of shocked that it hasn't hit Drudge and the front page of Yahoo.
posted by njbradburn at 11:18 AM on November 23, 2009

el_lupino: “Koeselitz - I botched your name twice didn't I? Genius. I'm going to go lie down in a cool, dark place for an hour.”

(Lie down if you want to, but don't fret on account of me - I have a really weird screen name that's not actually my name at all. [It's this guy's name.] I really don't mind. And I realized after putting up that comment there that "you are wrong" sounds a lot more serious and finger-pointy solemn than I meant it to. Sorry for that impression. No worries!)
posted by koeselitz at 11:33 AM on November 23, 2009 [1 favorite]

el_lupino: “If the Guardian link is right and more informative, then the story is less one of medical marvel and more one of great medical negligence or indifference.”

I think you're absolutely correct here; people may want to see this as a modern miracle, but really all Laurys is trying to do is put together a good system for reading the data we've actually already got. (Reporters have a bad habit, I think, of looking at a page of scientific stuff or hearing a scientific explanation, deciding it's just too complex to spend too much time on, and just calling it a "high-tech brain scan.") I think he's right that we should probably be a lot more scientific about diagnosing brain condition in coma patients.
posted by koeselitz at 11:37 AM on November 23, 2009

Looking at his published work, it seems like they've been using fMRI (functional magnetic resonance imaging) to establish whether the patients are really in a PVS.

Oh god; do you think it is too late to save the salmon?
posted by prak at 11:40 AM on November 23, 2009

I'd like to see this fellow respond to questions put to him by an interviewer, on video, in real time. Otherwise, I'm going to remain skeptical. (I heard about this first via this blog's post which in turn linked to Ann Althouse's blog, where the commenters naturally connected it to Teri Schiavo.)
posted by Halloween Jack at 11:40 AM on November 23, 2009 [1 favorite]

The point that I'm getting at above: I'm interested in whether it's really quote-endquote facilitated communication or whether he was actually interviewed by reporters.
posted by Halloween Jack at 11:49 AM on November 23, 2009

if his brain were functioning "completely normally" then there wouldn't be a need for a "hi-tech" scan; a routine EEG would pick up that activity, and just about any hospital in the industrial world should have an EEG machine

I wonder --- he goes into a coma in 1983, presumably he tested in some form at that time, perhaps several rounds of testing over the following weeks or months. And during that intital period, it's not clear how long, presumably he was in fact in a coma, and any tests he was given reflected that. But with no apparent change in his condition for a decade or more....was there cause for an EKG? Perhaps such patients are routinely tested to see if they've regained any function. But it wouldn't surprise me if they weren't, if they recieved a diagnosis, were put on a course of treatment which would enable them to survive as comfortably as possible, and left, perhaps to be tested again when a new doctor was hired in the treatment center or if a spcialist was visiting, a quick-look over on rounds using the simpler, rule-of-thumb diagnosis standards. Basically, why would they test him again if they thought they knew what was wrong with him, and that it wasn't going to change?
posted by Diablevert at 11:57 AM on November 23, 2009

Reminds me of this ol' chestnut:

Alfred Hitchcock Presents (Season 1, 1955): Breakdown
posted by MeatLightning at 12:13 PM on November 23, 2009 [1 favorite]

If this happened to me, my dad would probably sit by my bedside and talk endlessly about his job and the lawn and how his back hurts and...AAAHHHHHH!!!!!

My partner has already told me that if I go into a coma, he's going to sit by my bed every single day and read me scientific papers until I am so irritated that I wake up and throttle him.
posted by grapefruitmoon at 1:03 PM on November 23, 2009 [4 favorites]

One good thing to come out of this: We now know that it's impossible to die of boredom.
posted by fontor at 6:06 PM on November 23, 2009 [3 favorites]

James Randi is, unsurprisingly, skeptical.
posted by revgeorge at 7:14 PM on November 23, 2009 [4 favorites]

Good grief. Can somebody convince me that I'm not actually seeing what I think I'm seeing at 20 seconds into this video? Because it sure looks like that woman is literally just holding his hand and typing with it.
posted by teraflop at 8:08 PM on November 23, 2009 [3 favorites]

No way, el lupino is on the right track.

Someone sent this story to me this morning, understandably skeptical about it. I had dismissed it as a fraud, without even looking into it, then I saw it here. Here are some quick thoughts:

First, I can't find the case write up. Trust me, that is very suspicious.

Second, no one calls them"high tech scans." Not even the media. Seriously, what new technology did they borrow from the set of Fringe that allows them to better diagnose comas? The Neuroradiology paper cites MRI, fMRI, etc-- in other words, the usual tests.

In their defense, it is entirely possible that a man in a coma 23 years ago was evaluated rigorously then, but tests not updated over time. But even in this case, it's not new technology, it's simply a lack of attention to patient care. Which happens all the time, so there's that.

That said, unfortunately, radiological techniques have not advanced that much in 23 years, and certainly not in the past ten.

Third: after 23 years, the guy is... fine?
posted by TheLastPsychiatrist at 8:54 PM on November 23, 2009 [2 favorites]

This story is a sham, and the Amazing Randi hits the nail on the head...

I've been a nurse for only a short time in a small regional hospital, but I've seen many people in PVS and other such forms of coma. Their loved ones will think of anything to "prove" that the patient is still alive in any sense of the word. It is not only horrible for them to go though; it causes intense distress for the care team.

We have one patient, (details scrambled and changed for privacy purposes) Ms. T. She is absolutely by all verifiable tests completely brain dead. The only part of the body still working is the automated stuff that was not fried when she stroked. However, her devoted family member still swear up and down that this person is still "there" in some meaningful way. I've cared for this patient many a time and dread their frequent readmissions to the intensive care unit. The body does not react to anything except for the most gross movements (seizure-like) to the intense pain from suctioning and bedsore treatment. And yet the family member says things like "Oh, she moved her eyes a bit" or "She's trying to mouth words" when the patient has a horrible contortion on their face due to deep throat suctioning. Essentially, the body is sending out a gag reflex that flashes across the face as pure agony. I hate caring for Ms. T as she is DOV as we call it (dead on vent).

Families will run with this story as only a deeply loving person can: they refuse the possibility of death to their beloved. They will tell us, "But, didn't you hear on the news? They said that man was dead... who are you to decide?" Unfortunately, the rational answer "We are medical professionals" does not hold weight against arguments of the heart. We can bring so many back from the brink of death, but once the brain has been compromised, the body can live on. Family members will spend years convinced that their loved one is somewhere inside that husk of humanity; if only they could just convince others to believe them!

Then some person, perhaps without evil intentions, will tell them a way of proving it: facilitated communication. Just let this trained person hold this man's wasted hand and guide it to the right keys. And the aide will spell out those words that they have longed to hear: I love you, I miss you, I have been so lonely....and in their joy the family will reject reality just so they may have one more chance to communicate with the husband, wife, child or parent they lost so long ago.

This is the medical equivalent of hiring a medium to communicate with the spirit world.
posted by nursegracer at 9:43 PM on November 23, 2009 [25 favorites]

I was going to do some clever "this is fake" joke, but this is far too depressing. This is Terry Schiavo all over again. Jesus fucking Christ.
posted by dirigibleman at 10:12 PM on November 23, 2009

Wow this story/thread went from kind-of-horrifying to bone-crushingly-depressing! Note to self, try to remember not to ogle the train wreck; seriously.
posted by From Bklyn at 11:57 PM on November 23, 2009 [1 favorite]

nursegracer: “This is the medical equivalent of hiring a medium to communicate with the spirit world.”

You have clearly not read one single word of the linked articles or the papers I linked above. If you genuinely believe that MRIs are the equivalent of quack psychics, you shouldn't be a nurse at all.

dirigibleman: “I was going to do some clever "this is fake" joke, but this is far too depressing. This is Terry Schiavo all over again. Jesus fucking Christ.”

Good god, but us Americans are complete fucking morons. Look, idiots: this has nothing to do with Terry Schiavo, it has nothing to do with insane US horror-politics, it has nothing to do with manipulating people's emotions to play up a political angle. Well-known doctors who head major international clinics hardly ever have political or financial angles to play up, anyhow; at least not the angles people seem to be thinking of.

This guy isn't saying "hey, we should start prognosticating through star-charts and crazy witchcraft, and maybe your vegetating aunts will talk to us through the sky!" Fine, that would be horrific. Terrible. This isn't that. If someone's playing an angle - and I have no idea if he is, or if this doctor cooked all this up to make his paper look good - but if he is, then all that angle will get him is a paper which tries to convince the world to do MRIs on PVS patients. THE HORROR! At terrible as that sounds, it actually means more information about their state and what's going on - and more ammunition for a doctor to tell the family, "look, it's absolutely clear now that Joe here is pretty much brain-dead, okay?" or "it's apparent that he's had enough brain damage now that he'll sincerely never recover." And that means one more family that knows they should pull the plug and is forced to face it.

Fine - it's base and vile and manipulative if anybody's trying to give a bunch of false hope. But if even a little of this guy's theory is correct, there is real hope - not the thin, silly hope that many people might think they want, the hope that somebody's gonna wake up, but the hope that we can more clearly and scientifically determine if that's at all likely. The more we know those facts, the less families will be allowed to dither about and imagine all sorts of wonderful, happy possibilities where their daddy wakes up suddenly.

Again - Belgium, not US. Doctor, not crazy quack preacher. This isn't Terry Schiavo, and frankly I doubt any nation could be as stupid and inane as we were to have taken any part in that hideous mess.
posted by koeselitz at 1:52 AM on November 24, 2009 [2 favorites]

nursegracer: “We have one patient, (details scrambled and changed for privacy purposes) Ms. T. She is absolutely by all verifiable tests completely brain dead. The only part of the body still working is the automated stuff that was not fried when she stroked. However, her devoted family member still swear up and down that this person is still "there" in some meaningful way. I've cared for this patient many a time and dread their frequent readmissions to the intensive care unit. The body does not react to anything except for the most gross movements (seizure-like) to the intense pain from suctioning and bedsore treatment. And yet the family member says things like "Oh, she moved her eyes a bit" or "She's trying to mouth words" when the patient has a horrible contortion on their face due to deep throat suctioning. Essentially, the body is sending out a gag reflex that flashes across the face as pure agony. I hate caring for Ms. T as she is DOV as we call it (dead on vent).”

In fact, you're making Laurys' case for him. His argument is that the Glasgow test - which is based on exactly what you're talking about, some imaginary, mystical connection between involuntary hand and eye movements and consciousness - is a completely and totally inaccurate test, that it is used far too often, and that it should be dropped in favor of MRIs. If doctors and nurses across Europe stopped telling families "oh, we're just checking to see if there's eye, face, or hand movement, since that indicates consciousness" and told them instead "looking for movement is pointless - it could mean anything, so we need to do an MRI" all this hocus-pocus would be drastically reduced.
posted by koeselitz at 1:57 AM on November 24, 2009 [1 favorite]

Are people really this freaked out about the use of MRIs? Or do they just not realize that that's what they're arguing against?
posted by koeselitz at 1:58 AM on November 24, 2009 [1 favorite]

Goddamn. I hadn't seen that video.

I'm kind of at a draw here - I can't really believe that anybody at the Guardian could possible have witnessed that sort of sham and reported it as fact. So I'm stuck figuring they just interviewed and fact-checked - pretty well, so far as I can tell. And while I'm no MRI or neurology expert, the papers seem legit and in line, and furthermore argue nothing that's remarkably controversial or stunning. Which is good, I think.

The link to Randi's site above doesn't seem to work at all, but looking at his site, a completely different sort of story seems to be spreading through US news outlets - a sappy, simpering, clearly money-pandering story that plays as thinly veiled fraud.

Hmm.
posted by koeselitz at 2:06 AM on November 24, 2009

By the way: sorry, nursegracer and dirigibleman, for the screeds above. I honestly had no idea what you guys were on about, being unable to get through the Randi link (which is broken) and not seen the video, only knowing the articles and papers I read earlier today. But those few seconds of video alone illuminate pretty clearly what you mean, and it's sort of ridiculous that an apparently pretty prestigious doctor would countenance this sort of thing. Not enough medical money in Belgium, apparently - I'd thought the EU had pretty damned strong restrictions on this kind of thing, but if they don't now I'd guess they soon will.
posted by koeselitz at 2:16 AM on November 24, 2009

Or - Germany! That's even more weird. Isn't this kind of thing very, very illegal in Germany?
posted by koeselitz at 2:17 AM on November 24, 2009

koeselitz, I think you might be overestimating the abilities of Guardian journalists. They've also run a piece today to accompany the story entitled Falsely diagnosed coma cases, very few of which, if any, appear to be actual falsely diagnosed coma cases (aren't these just people who woke up from comas?)

Also, I've lost track of what you're saying, a bit, koeselitz - why do you mention Germany? EU restrictions on what?
posted by creeky at 6:08 AM on November 24, 2009

This happened in Berlin. That's why I mention Germany.
posted by koeselitz at 7:18 AM on November 24, 2009

Is it possible that it's both? That the fMRI was correct and the guy is conscious, but has absolutely zero motor control whatsoever, AND that some dreadful hucksters latched onto that diagnosis and came along with their "facilitated communication" bullshit that Randi rails against to make it appear that he can tap out messages? Yikes. What's worse than being misdiagnosed as being in a coma for 23 years? Being correctly recognized as conscious but unable to communicate, only to have to watch some asshole perpetuate the fraud that you are in fact saying things that you aren't.
posted by Rhomboid at 8:11 AM on November 24, 2009 [8 favorites]

Rhomboid: That's exactly it. What's tragic here is that the fMRI results are really meaningful, and point to a new way to test for brain death. But the bullshit FC will totally overwhelm that in new reports.

This poor guy may very well be conscious, but he hasn't talked to anyone. More on FC from Frontline. Money quote:

"Mr. PAGLIERI: We literally really didn't get one correct response. I mean, it was unbelievable, really, given-- given, you know, our prior belief systems about the whole thing.

Mr. WHEELER: We had-- we ran 180 trials. There were 180 trials where valid communication could have been demonstrated and none-- none did. We had overwhelming evidence for facilitator control. That was the main finding."

Facilitated communication is a fraud. 100%, no doubt whatsoever.
posted by rusty at 8:22 AM on November 24, 2009 [3 favorites]

(news reports)
posted by rusty at 8:23 AM on November 24, 2009

That's exactly it. What's tragic here is that the fMRI results are really meaningful, and point to a new way to test for brain death. But the bullshit FC will totally overwhelm that in new reports.

"Craig Bennett, a postdoctoral researcher at UCSB, submitted a whole Atlantic salmon to fMRI analysis, and found that this fish could apparently detect, and respond to, the the emotional state of human beings. Remarkable science, especially considering the salmon was dead at the time."
posted by prak at 10:02 AM on November 24, 2009

Being correctly recognized as conscious but unable to communicate, only to have to watch some asshole perpetuate the fraud that you are in fact saying things that you aren't.

Now that's depressing. F*ck.
posted by njbradburn at 10:38 AM on November 24, 2009

prak: So you've analyzed the research here and determined that it suffers from the statistical false-positive effects the dead salmon paper indicates? Or are you just determined to drop that link anywhere you see "fMRI" now?
posted by rusty at 11:03 AM on November 24, 2009

So you've analyzed the research here and determined that it suffers from the statistical false-positive effects the dead salmon paper indicates?

Have you and found it doesn't?
posted by prak at 11:20 AM on November 24, 2009

calls to mind the harrowing "Johnny Got His Gun" by Dalton Trumbo.

I'm not sure whether this story is true or not, but just putting the idea in my head is life changing.
posted by cubby at 11:26 AM on November 24, 2009

Man, people gave me a really hard time when I questioned whether this guy really wrote all the poems attributed to him. His style of writing involved his mother holding his head in both hands while he 'pointed' to letters with a head-mounted pointer. As described it seems to have exactly the same amount of intervention from another party involved that calls FC into question.
posted by anazgnos at 11:26 AM on November 24, 2009

Facilitated Communication news:

From Wired, and real organizations dismissing it.

Just because you may not like James Randi doesn't mean he's wrong.
posted by lothar at 3:23 PM on November 24, 2009

What's tragic here is that the fMRI results are really meaningful

I think "may well be really meaningful" is more accurate at this point--there's still a lot of controversy about fMRI protocols.
posted by Sidhedevil at 3:25 PM on November 24, 2009

This thread is probably dead, but in reviewing the articles, I made a few observations:

1. As I read the Telegraph and Guardian articles, the focus is on how a conscious patient was missed/misdiagnosed-- NOT about Facilitated Communication. Yet that's where the debate is.

Logically, that debate is a red herring, it is entirely separate from the real question of whether/how such a patient was misdiagnosed. Even if FC is an intentional hoax, does that mean he isn't really conscious?

So Randi, et al-- and no disrespect to him-- has made the debate about what he wants to talk about.

2. Laureys, who as near as I can tell is not CGI but a real doctor, "wants" the story to be about better/newer applications of technology. We can debate whether this is really a newer approach, or just a more conscientious application of standard of care, but what he is really doing is asking the German government to pay for it. From his perspective, he is trying to alter standards of care to regularly include this technology. Following that logic, it's no surprise British papers picked up on this.

3. Where would Americans go with such a story? Right where they all went-- Terry Schiavo. For U.S. doctors the application of "high tech" scans is hardly novel, even getting Medicaid/Medicare to pay for it isn't such a struggle. But that comparison isn't reasonable: Terry Schiavo was scanned all over the place, the debate with her was whether the scans could detect consciousness; the Houben debate is whether we should be scanning people.

In conclusion: there is nothing doctors, and the American public, like better than commandeering a scientific question with only limited information and making it about politics. Remember a year ago when everyone was suddenly a banking analyst? Same thing.

See? I just did it too.
posted by TheLastPsychiatrist at 7:26 AM on November 25, 2009

The newspapers are finally beginning to report that this story may not be all that it seems. The Times reports that Dr Laureys has tested whether or not the facilitator is guiding Mr Houben's hand.

There is even comment on the issue typed out by Houben and/or his facilitator:

“Now I can communicate and talk via facilitated communication. Not everyone believes in this form of communication. It is a controversial method but, for me, it is vital to life. At last, my views can be heard and my feelings expressed.”

I'm still absolutely intrigued, and quite anxious, to see how this turns out.
posted by creeky at 7:34 AM on November 25, 2009 [1 favorite]

Logically, that debate is a red herring, it is entirely separate from the real question of whether/how such a patient was misdiagnosed.

Is it a red herring? What is the source for the quote used in this post? Was it from an interview that used Facilitated Communication? I do agree that it's a separate issue but I believe it is an incredibly important one.

There are ways to assist communication that do not involve removing the voice and agency of a person with a disability. If Houben can twitch his index finger, a laser-system like Eva uses could be devised. Or a scroll wheel to choose the right letter and then word.
posted by muddgirl at 10:43 AM on November 25, 2009

There was more public questioning on this today - pretty high-profile, given that it was on the front page of msn for a while this morning.
posted by dilettante at 12:37 PM on November 25, 2009

1. As I read the Telegraph and Guardian articles, the focus is on how a conscious patient was missed/misdiagnosed-- NOT about Facilitated Communication. Yet that's where the debate is.

The article is centered on quotes from Mr. Houben, and it is not at all clear that he has said those things or is even capable of saying them. The debate is over whether the patient is actually conscious and lucid as claimed, and the issue of FC is completely central to that debate.
posted by anazgnos at 2:53 PM on November 25, 2009

I wonder if he has any gaze control and can learn to operate a keyboard that way.
posted by njbradburn at 8:45 AM on November 26, 2009

I'm still absolutely intrigued, and quite anxious, to see how this turns out.

The best possible resolution would be that he regains control and can actually express himself without "facilitated communication" and exposes the "facilitators" for the fucking heartless scammers that they are. I would seriously pay to see that. It's disgusting what they're doing, and that guy must be screaming and wailing all the while the idiots use his body to type meaningless drivel that not only are not his words or thoughts, but also reduces or even eliminates any further attempts to communicate with him to a significant degree.

It's like those shits are laughing at him being locked inside while using his body like a puppet. Seriously fucked up.
posted by splice at 11:02 AM on November 26, 2009 [1 favorite]

The article is centered on quotes from Mr. Houben, and it is not at all clear that he has said those things or is even capable of saying them. The debate is over whether the patient is actually conscious and lucid as claimed, and the issue of FC is completely central to that debate.

Exactly - the media is making the story about what it wants to talk about: faciliated communication. And yes, FC is basically bullshit.

But, that isn't how this guy was revealed (maybe) to be concious, fMRI was. But the media can't/won't talk about that because it's too complicated and doesn't sell enough papers and ad space/clicks.

FC is not central to whether this guy is conscious, it's tangential. This guy could be locked-in and conscious and unable to communicate, even through FC; or maybe he's locked-in and can't communicate at all and the "FC therapist" is a fraudster; or maybe he's a vegetable. But FC doesn't tell us anything about those (see how under any of those conditions FC still "works"?), brain imaging does.
posted by r_nebblesworthII at 11:08 AM on November 26, 2009

I am with splice on this. When I first read this news, I was rather surprised by the fact that Mr. Houbens, after 23 years of being "locked-in", was able to communicate so cogently and (to be honest) so smarmily. After such an experience, and independently of any physical brain damage, I'm sure that I'd be a barking, howling psychological wreck.
Then I read about the "facilitator", and I started finding it downright fishy. Now that I've read Randi's and Myers' comments about "Facilitated Communication", I'm downright outraged by this scam, and by the uncritical, lazy journalism that has spread it around the world. Next thing they'll be telling us there are WMDs in Iraq...
posted by Skeptic at 9:35 AM on November 27, 2009

Next thing they'll be telling us there are WMDs in Iraq...

Hey, you better believe it. Using facilitated communication, Saddam Hussein has finally admitted to the WMDs and has even provided some clues as to where they're buried. And only two years after he was executed! It's a modern medical miracle, it is!
posted by five fresh fish at 9:42 AM on November 27, 2009

If you don't like the Randi link, here's one from Michael Shermer.

Interestingly, the news services have mostly dropped this story - little sign of further explanation. Which is too bad.
posted by sneebler at 6:18 AM on November 28, 2009

Ben Goldacre comments on the story.
posted by creeky at 5:47 AM on December 7, 2009