A Silent Hell: For 23 Years, Man Was Misdiagnosed as a Coma Patient

By Andrew Moseman | November 24, 2009 1:27 pm

brain 200From 1983 to 2006, the Belgian man Rom Houben was misdiagnosed as a coma patient. In fact, doctors say, he was conscious for all those years, but incapable of communicating with doctors or family members who leaned over his bedside. But neuroscientist Steven Laureys finally caught the 23-year mistake. Laureys just published a paper on the case in BMC Neurology, spurring  wonder at the remarkable case—and skepticism that Houben is truly “communicating” now.

Houben was paralyzed in 1983 after a vicious car crash, and doctors incorrectly diagnosed him as being in a persistent vegetative state until 2006. An expert using a specialized type of brain scan that was not available in the 1980s finally realized it, and unlocked Houben’s mind again [AP]. Houben indeed had an almost normal brain, his PET scan showed, and doctors say they clinched his consciousness by having him move his foot and then spell words on a touchscreen.

The team contends that many more similar cases could be misdiagnosed. A study carried out last year on 103 patients by Laureys and his colleagues at Liege’s Coma Science Group found that 41 per cent of patients in a Minimally Conscious State (MCS) were misdiagnosed as being in the much more serious Vegetative State (VS) [CNN].

Houben’s mother was never convinced by that her son was completely vegetative, and her persistent search for new doctors and new brain tests eventually led to Dr. Laureys’ discovery. According to news reports, Houben can now communicate with a computer and keyboard system, which he has used to recount his two-decades-plus of frustration. “I screamed, but there was nothing to hear,” he said. He added that he then became a witness to his own suffering as doctors and nurses tried to speak with him until they gave up all hope [The New York Times].

But is it really Houben doing the communication? Critics of “facilitated communication” like James Randi are howling about the coverage of the case, saying that FC has been debunked as a fraud for decades now. Psychologist Daniel Wegner, professor of psychology at Harvard University and a fellow of the American Association for the Advancement of Science has stated that facilitated communication is a striking example of the ideomotor effect, and tests of FC show that it is a complete fraud, farce, and delusion [James Randi Educational Foundation]. The debate over facilitated communication centers on whether the physically impaired patient is really contolling which letters are typed on a keyboard, or whether the “helper” who supports the patient’s hand is actually guiding it, in much the same way that a medium guides the marker on an Ouija board.

Related Content:
80beats: Vegetative Coma Patients Can Still Learn–a Tiny Bit
The Loom: Consciousness and the Culture Wars
DISCOVER: Vital Signs: Locked in Place
DISCOVER: Vital Signs, all our medical mysteries

Image: iStockphoto

CATEGORIZED UNDER: Health & Medicine, Mind & Brain
MORE ABOUT: brain, coma, neuroscience
  • Sherry

    I’d like to see evidence of his typing, sentence structure and spelling ability before the accident.

    If that is not possible, I’d like to be the one acting as his facilitator for 30 min.

  • Janus

    The whole “facilitated communication” thing makes this case problematic.

  • http://clubneko.net Nick

    There is a very easy, very simple solution and I believe that is Braingate (or similar technology) that you read a persons thoughts and have them control a speech synthesizer or computer screen that will type for them. I’d like to see anyone facilitate that. There are direct neural interfaces where they hack a hole in your skull and drill in electrodes, as well as electrode hats that will do the same thing with slightly less resolution of brainwaves.

    I’m honestly shocked they haven’t tried it yet. I’m sure they could prop/tape open his eyelids so he could see a computer screen, though I’m not sure if he could even focus, as damaged as he appears to be.

    And hey, perfect candidate for experimental surgeries re-growing nerves to de-paralyze people, right?

  • http://www.randi.org James Randi

    I suggest readers go to http://www.randi.org and click on the latest update of the first item. This is POSITIVE proof of the idiocy of “FC”…

  • Stat

    The video shows”Facilitated Communication” and this is a fraud. It is a cruel hoax on the mother and the world.
    It may be the patient has some voluntary consciousness, but this could be determined through eye-blinks and other established techniques.

    A simple blind trial (showing the patient an object with the “communicator” out of the room) will demonstrate that is just a high tech ouija board.

    The nurse and doctor may not be criminally fraudulent, but they are deluded.

  • http://Art-of-Innovation.com Auri

    After hearing the teaser bit about this story, I was curious – but after seeing the clip on CNN where you can see the “facilitated communication” I started to wonder. On checking Google News and doing a sub-search on Skeptic OR Skeptical OR fraud on the 1000+ articles (as reported by G), only 2 (yes two) came up!

    So here’s a very simple test to explore the veracity of these claims.

    Preparation:
    2 facilitators
    - Preferably one who does not speak Flemish
    - Not hired by the family (someone who has not been contacted by the family)

    Process:
    Allow 1 facilitator into the room (while the other is in another room without ANY communications.)

    Ask the patient one or two password recovery type questions (what was your first pet/school/car etc.) that is not common knowledge. Or a question about a personal preference (What food item do you most yearn for / favorite music band etc.)

    Then switch to the other facilitator.

    Compare answers.

    ————

    Regardless of the above, my best wishes to the patient and his family/neighbors. It takes a lot of determination and caring to look after someone for over 2 decades – and that part of the story itself should inspire us to examine how we care for people (with normal faculties) around us.

    … Auri.
    http://Art-of-Innovation.com
    SF Bay Area, CA

  • Brian Too

    My understanding was that Facilitated Communication was completely discredited in a proper double blind study 10 or more years ago. There was a show, Front Line (?) that covered the matter.

    If that’s the ‘communication’ that Mr. Houben is engaging in, then he’s not communicating and he may in fact be in a coma.

  • Bob Snyder

    I think Stat’s suggestion would be the easiest way to figure out whether this person is truly communicating or not.

    On a side note, he seems to type remarkably fast for someone in his condition.

    The real story here is the possibility of being trapped in your own body. Regardless of whether or not the man is communicating, it would be a tragedy if he was truly conscious with no way to communicate to the outside world.

  • Jeremy Bolt

    Well can he move? Or does he just communicate through that device….

  • Rob

    In the video report at http://www.cbsnews.com/video/watch/?id=5759694n&tag=related;
    photovideo 1:17 in you hear the clear and steady tap-tap-tap-tap of “his” typing while his eyes aren’t even open.

  • Big Tuna

    Why not try to arouse him by talking sexy to him? A little hot breathe in his ear should make noticeable blooms appear, at least on a brainscan. There are other things you could do, but they would be too invasive. If you did that you’d suck.

  • http://PT Johnny Costello

    randi is an A.H.

  • Jumblepudding

    After seeing this on CNN and elsewhere online, I feel really let down that the reality of his supposed “communication” is so suspect.

  • Angie

    How about a little bit of common sense combined with humanity? Certainly parlayzed people need help in order to be able to communicate with the outside world. How do you prove it? Do you have to prove everything to know for sure? Give him a chance! All efforts of support concerning his communication with the rest of the world will help scientists to reveal more about possible ways of communicating with paralayzed patients in the future. I wonder when they will find the first woman, who also suffers from that kind of wrong diagnosis and actually do something about it (as the first man with this specific issue was discovered not so long ago and is being helped).

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