Misdiagnosed coma patient—is he really that coherent?

The Belgian man believed to be in a coma for 23 years, but recently found to be conscious, has been big news for the past few days. But now problems are emerging with the story. No one doubts that he's sentient, since MRI scans have confirmed this. But his ability to communicate is being questioned. Skeptics are questioning whether the statements attributed to him really are his, or do they come from his "facilitator" (a woman who holds his hand to help him type on a keyboard)? Doctors are also questioning how someone could be so profoundly isolated for so long, and yet still be so sane and coherent. From Wired.com:

“If facilitated communication is part of this, and it appears to be, then I don’t trust it,” said Arthur Caplan, director of the University of Pennsylvania’s Center for Bioethics. “I’m not saying the whole thing is a hoax, but somebody ought to be checking this in greater detail. Any time facilitated communication of any sort is involved, red flags fly.”

There's also an ongoing discussion of the case in the hoax forum.

Health/Medicine

Posted on Wed Nov 25, 2009



Comments

So far the mass media hasn't caught on yet. Or maybe it's too good a story to mess up with facts. I've read that the man, Rom Houben, will be "writing" a book about his experiences. Of course it won't be him writing it. It'll be the facilitator, and she'll make millions. Next time someone comes here and criticizes our skepticism while asking, "What harm does it do?", just point them to this story.
Posted by Captain Al  on  Wed Nov 25, 2009  at  10:39 AM
a few other skeptics around have pointed this out, I wonder if they have even tried to interchange facilitators and ask the same questions.
Posted by mario  on  Wed Nov 25, 2009  at  01:22 PM
When I first read about this man's story, I was happy for him that he was finally able to communicate with his family. Then I heard it was via "facilitated communication." Talk about letting the air out of the balloon.

James Randi has proposed a simple test of the "facilitated communication" process, which wouldn't interfere with the process at all. Oddly, the "facilitators" don't seem interested in being tested, even with a million dollar prize dangled in front of them.
Posted by Cranky Media Guy  on  Wed Nov 25, 2009  at  06:42 PM
I'm not saying this man isn't conscious, but even a dead person could type messages if someone "facilitated" it by holding his hand on the keyboard.

This kind of thing always reminds me of the experiments in the 1970s that involved teaching American Sign Language to apes. There was a lot of excitement about how articulate these apes were, until Herbert Terrace (who actually ran one of the most famous such experiments) blew the whistle by pointing out that the apes always had someone (usually off-camera) prompting them to make the correct signs. The apes were just copying (aping, if you will) the gestures of their trainers, and they didn't "talk" when they weren't being prompted. And they weren't really very good at talking under any circumstances. They did learn to make signs, but they never combined them into meaningful phrases or sentences, and most of their utterances were some version of "give me food" (something every dog I've ever known can also indicate by signs).
Posted by Big Gary  on  Thu Nov 26, 2009  at  04:57 PM
Details by the ever informative Orac here: http://scienceblogs.com/insolence/2009/11/another_contender_for_the_worst_reportin.php
Posted by Tsutsugamushi  on  Fri Nov 27, 2009  at  05:56 AM
I heard that the first thing he communicated was "For the love of God, please scratch my nose!"
Posted by rockgolf  on  Fri Nov 27, 2009  at  07:26 PM
The whole thing can be sorted out by a simple test . . . send the facilitator out of the room, then light a fire in the room. If he's alive, he'll soon show it. If not . . .
Posted by D F Stuckey  on  Fri Nov 27, 2009  at  08:26 PM
You made me laugh out loud, rockgolf.
Posted by Cranky Media Guy  on  Sat Nov 28, 2009  at  03:34 AM
There was a similar case in Australia a few years ago, a nurse gained control of a mentally damaged patient through the court by claiming that he could communicate with her help as a "facilitator"
Posted by Michael Whelan  on  Sat Nov 28, 2009  at  10:07 AM
About 10 years ago Frontline (PBS, USA) did a show on facilitated communication for children with autism. People who work with autistic kids really wanted this to work and were very tolerant with movement even if skeptical. In the documentary they block the "facilitator's" view of simple objects that are in plain view of the autistic individual. They get 0% right (although somewhat comically the "facilitator" does not go down without randomly guessing what the object is). These studies are not hard to do and can be reproduced informally if you want to know who is really "communicating". The fact that adherents of "facilitated communication" never want to check this shows how powerful wishful thinking and a professional/profit motive are.
Posted by floormaster squeeze  on  Tue Dec 01, 2009  at  11:36 AM
A follow up article features a medical doctor who claims the man has been conscious for quite a while: three years ago, he apparently was already able to write using his foot.
He further explains that Houben wasn't in a real coma (or 'unarousable unresponsiveness'), but probably in some form of 'locked-in syndrome'.
The doctor speculates that this case has been dug up in the context of debates in several European countries regarding euthanasia legislation. Houben's case might be instrumentalised to bolster the pro-life point of view...

For those interested in the article (and able to read Flemish-Dutch 😉 ):
http://www.standaard.be/artikel/detail.aspx?artikelid=N12IU8NC
Posted by Rob  on  Tue Dec 01, 2009  at  01:08 PM
Yesterday I watched some of the videos of the "facilitator" and this poor man. It's worse than I thought. She doesn't really even make a pretense of waiting for signals from him, she just grabs his limp hand in her fist and types away with it as fast as she can. During much of this "communication" he has his eyes closed and appears to be asleep. This doesn't even rise to the level of a good parlor trick; it's just shameless exploitation of a helpless person.
Posted by Big Gary  on  Wed Dec 02, 2009  at  08:27 AM
I'm usually willing to at least try to assume that people who do things like "facilitated communications" believe in what they're doing. Things like you describe, though, Gary, make it hard to extend that courtesy to them. I suppose it's *possible* that the "facilitator" is such a mark that she doesn't realize how bogus what she's doing is, but that's a stretch.
Posted by Cranky Media Guy  on  Wed Dec 02, 2009  at  06:46 PM
Clearly, this man is manipulating his facilitator.

:lol:
Posted by DSz  on  Thu Dec 03, 2009  at  05:15 AM
Good article on this:
http://www.guardian.co.uk/commentisfree/2009/dec/05/bad-science-ben-goldacre-column
Posted by Mr Henderson  on  Sun Dec 06, 2009  at  11:27 AM
Hi,
Its really very heart breaking.Although, the current trend is to favor facilitated communication and pointing systems, both of these response forms have several disadvantages that impede the development of the verbal operants. It is suggested that for many nonverbal individuals sign language is a better alternative response form, and has a better chance of improving speech.
Posted by psp zubeh  on  Wed Dec 09, 2009  at  01:47 AM
Today in Belgian news, a neurologist confirmed the facilitator was doing the talking. They showed Rom some objects when the facilitator was outside the room, and when asked afterwards to type what he'd seen, Rom -or rather the facilitator- couldn't give a correct answer.

The neurologist is still convinced that Rom's concious, though, they'll just have to find a new way of communicating.
Posted by Sarah  on  Thu Feb 18, 2010  at  12:56 PM
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