The story of Rom Houben was posted earlier today on Neatorama, and is being carried on every major online news site - a Belgian man paralyzed for 23 years and diagnosed as being in a vegetative state has been found through new technology to be alert but "locked in." With an assistant helping him communicate by means of a keyboard, he is now reportedly describing what this experience has been like. The case adds fuel to the fiery controversy regarding end-of-life planning and the right to die.
Every site that I have encountered has taken the story at face value. The one exception has come from the James Randi, who has written an essay entitled "This Cruel Farce Has to Stop!" He notes that the communications from the subject all occur via a "facilitator" who "supports" the patient's hand as it traverses the keyboard...
At the essay, Randi states that he has previously investigated "facilitated communication" when it was used to communicate with severely autistic children; he found the technique to be faulty and subject to observer bias in the manner of the "clever Hans" effect.
This patient is clearly severely impaired but is clearly not brain dead. Brain imaging studies have shown evidence of consciousness and awareness, which is fully compatible with his impairment. The controversy is whether the communications are valid representations of his thoughts, or whether they are (consciously or subconsciously) creations of the facilitator.
The video embedded above is a brief excerpt from the MSNBC video. Several other videos are available at the BBC, Telegraph, and other news sites.
Link, via Reddit.
Addendum: Subsequent controlled trials failed to show any validity for "facilitated communication."
Every site that I have encountered has taken the story at face value. The one exception has come from the James Randi, who has written an essay entitled "This Cruel Farce Has to Stop!" He notes that the communications from the subject all occur via a "facilitator" who "supports" the patient's hand as it traverses the keyboard...
The "facilitated communication" process consists of the "facilitator" actually holding the hand of the subject over the keyboard, moving the hand to the key, then drawing the hand back from the keyboard! This very intimate participatory action lends itself very easily to transferring the intended information to the computer screen. In the video you have just viewed, it is very evident that (a) the "facilitator" is looking directly at the keyboard and the screen, and (b) is moving the subject's hand. The video editing is also biased, giving angles that line up the head of the subject with the screen, as if the subject were watching the screen.
At the essay, Randi states that he has previously investigated "facilitated communication" when it was used to communicate with severely autistic children; he found the technique to be faulty and subject to observer bias in the manner of the "clever Hans" effect.
This patient is clearly severely impaired but is clearly not brain dead. Brain imaging studies have shown evidence of consciousness and awareness, which is fully compatible with his impairment. The controversy is whether the communications are valid representations of his thoughts, or whether they are (consciously or subconsciously) creations of the facilitator.
The video embedded above is a brief excerpt from the MSNBC video. Several other videos are available at the BBC, Telegraph, and other news sites.
Link, via Reddit.
Addendum: Subsequent controlled trials failed to show any validity for "facilitated communication."
however, there are folks who have been "locked-in" and there was one (disturbing) research investigation into awareness levels of vegetative patients that showed brain activity consistent with awareness -- here's the pubmed entry:
http://www.ncbi.nlm.nih.gov/pubmed/16959998
"We used functional magnetic resonance imaging to demonstrate preserved conscious awareness in a patient fulfilling the criteria for a diagnosis of vegetative state. When asked to imagine playing tennis or moving around her home, the patient activated predicted cortical areas in a manner indistinguishable from that of healthy volunteers."
note that the researcher's findings have not been verified or replicated, but the study and research is probably still very solid science.
Also, Frontline did a very good documentary in '93 on FC.
http://video.google.com/videoplay?docid=3439467496200920717#
Thank goodness James Randi is still out there. It sounds like a human Ouija board.
Thanks for that link! Fascinating video, watched the whole thing.
What's really sad is that the experts and the so-called doctor journalist just take this at face value. And I have to consider that this story is being promoted cynically right now just to inflame anti health care reform sentiment.
Just how long has this particular "facilitation" gone on? Who initiated it and why? How long did it take for the "facilitator" to produce communication and what's the supposed process (feeling micro muscle twitches or is there a psychic claim?) and who does the "facilitator" work for?
Further experiments (e.g. in which the child was shown an image not shown to the facilitator and asked to describe it) showed the communication to be entirely that of the facilitator.
These experiments are easily implemented and would quickly set the record straight for this subject, as well, were the patient's family (and doctors?) not wedded to the false hope provided by what is almost certainly a farce.
The paper doesn't mention facilitation. Nor does it mention communication, except as one measure in assessing vegetative state.
If Randi is dead, then there's been a cover-up of epic proportions :)
But I think that misses the point here. The patient may well be conscious; that doesn't imply anything about whether he's communicating.
I've seen facilitators facilitate while only touching an elbow or shoulder. Where are you all getting your information that facilitation "doesnt work" if the facilitator isn't looking at the keyboard.
(facilitation while only touching the elbow)http://www.youtube.com/watch?v=iyjl4p2mNK4
How would they get the information to transmit while only touching a person's elbow or shoulder? How could a paralyzed person transmit any instructions through that elbow or shoulder as specific as "press A on the keyboard"?
Why doesn't Stephen Hawkings use s facilitator? Because he would disprove what they're doing. Strange how the only people that this supposedly wosks with are people who can not confirm the facilitator's accuracy.