Nov 27 2009
On Wednesday I wrote about Rom Houben, the 46 year old man who spent the last 23 years in an apparent vegetative state (PVS) following a motor vehicle accident. Recently it came to light the Houben is not in a PVS – he has some degree of consciousness and his PET scan shows near normal brain metabolic activity. It is likely, therefore, that Mr. Houben has some impairment of consciousness, but he is not vegetative. In fact, according to his neurologist, Dr. Steven Laureys, he has minimal but definite signs of consciousness clinically, but combined with the PET scanning data he likely has significant consciousness (more than what would be called a minimally conscious state – see my earlier post for more details).
If that were all there was to this case, this would be a very interesting, if unusual case, that highlights the complexity of assessing consciousness in patients who are not able to communicate directly. This is Dr. Laureys’ area of research, and he is desperate to keep the media’s treatment of the Houben case fixed on this point.
However, this case has another angle that simply cannot be ignored, despite Dr. Laureys’ wishes. The public video of Mr. Houben’s communication shows a “facilitator” moving his paralyzed hand around a computer screen with uncanny speed and accuracy. Through this method Mr. Houben “speaks” to the world about his condition, and is even, we are told, writing a book.
The problem is that the communication shown on these videos is simply impossible. We see Linda Wouters, Houben’s “facilitator”, looking intently at the screen and typing away, while Houben looks away with his eyes closed. No one can one-finger type without looking at the screen. Wouters claims to read the subtle clues from Houben’s intent – this despite the fact that clinical exams revealed his hand was completely paralyzed. The video also does not show what Wouters claims – following subtle muscle clues is very difficult, and would require (if at all possible) a gentle touch and some time to zero in on the intent, most likely with some overshooting . Again, what we see in the video is a woman typing very fast and precisely using Houben’s paralyzed hand.
This case must also be viewed in the context of history of facilitated communication (FC) – a technique introduced about twenty years ago to allegedly allow the cognitively or motor impaired to communicate by typing. The theory was that some people are just too weak to move their hand around to type, so a facilitator will support their hand while the client directs the movement. However, testing showed that this technique was nothing more than self-deception – specifically the ideomotor effect. It is the facilitator who is doing all the communicating.
Despite utter scientific failure, FC lives on in the fringe of legitimate therapy. It is also often a cruel form a pseudoscience. Family members have been deceived into thinking their impaired children were writing poetry, only to have that delusion taken from them. There have also been numerous accusations of physical and sexual abuse made via FC. FC is a destructive pseudoscience that leaves victims in its wake.
I tried to communicate all of this to Dr. Laureys in a private e-mail, to let him know that the Houben case is about to be consumed by the FC controversy. He insisted that it shouldn’t be – as if that were enough to make it so.
Now Laureys has written a response to the media attention of this case in the New Scientist. In it Laureys persists in trying to evade the FC issue, but he is, unfortunately, just digging himself into a deeper hole. He writes:
He has gone from being ignored for many years and considered vegetative to being recognised as conscious. And now he is again being treated as if “it is impossible, he cannot be a cognitive being”. Should I respond to that? I don’t want to.
Laureys doubly misses the point. I and the other medical bloggers that I am aware of are not stating that Houben cannot be conscious or even that he is not conscious. We have only said – we don’t know (based upon public information). I also expressly stated that it is likely that Houben is conscious to some degree, if the PET scan shows high activity. I simply asked what the objective signs of consciousness were – and I still have not heard any answer.
Second – the controversy now is not so much over whether or not Houben is conscious but whether or not he is truly communicating through Wouters or if this is just another cruel FC deception. Laureys is trying to take the sensitive high ground, but in fact he is ceding it. The worst case scenario now is that Houben is conscious, and the fleeting attempts to communicate with him have been usurped by Wouters, who is now communicating in his name. Worse than being silenced – Houben may be a puppet, while words are being typed into his mouth. This also means his family are victims of this deception.
Regarding the FC controversy, Laureys only says:
I am a scientist, I am a sceptic and I will not accept any communication device if it is not properly tested. But I am not the one who made him communicate with the touch screen, I was just there to help him get rid of the diagnosis of vegetative state. And I don’t think one can say, based on videos on the internet, something meaningful about the use of the touch screen.
This is not a coherent response – Laureys first says he is skeptical, but then only distances himself from the FC without really commenting on it. Then he criticizes those who have tried to make sense of the public video of the touch screen typing. Dr. Laureys is also dead wrong in his last statement – we can say many meaningful things about the video. That is actually quite good evidence of what is going on. We can say, for example, that in the videos where Houben is not even looking at the screen that he is absolutely not directing the typing, which in turn means that Wouters is. If Wouters is directing the typing some of the time, then it is very likely she is directing the typing all of the time.
Again – this says nothing about Houben’s consciousness, just the lack of validity of the FC being used.
When asked to clarify Laureys says:
He has undergone a very extensive medical and neurological assessment – but as his physician I cannot tell you more. I am in a difficult position: do you want me to put his medical record on the internet, or show the videos we made for his assessment? I don’t think you would like it if I put results of your IQ test on the internet.
I appreciate that Laureys is in a difficult position. However, that does not justify his evasiveness on this case. Laureys wants Houben to be the human face on his campaign to improve the standard of care regarding diagnosis of impaired consciousness. While I applaud his research and his efforts to improve care, the Houben case is not the case to use to make the points that Laureys wants to make. At least, it cannot be such a case while the FC controversy is hanging over it.
Laureys cannot have it both ways – he cannot make Houben a public case, but then claim confidentiality on all the important details – details that an appropriately curious and skeptical public want to know in order to make sense of this case. Laureys wants us to just ignore what we see in the videos – even though they assault basic common sense. Further, the FC controversy has been a bitter one for scientists, because of how cruel and abusive it is, and the fact that proponents continue to use it even after it has been scientifically shown to be without any validity. Laureys cannot ask us to just ignore that, and to take his word for it that this case is legitimate.
As far as using the case of Rom Houben as a representative case to highlight the complexity of diagnosing impaired consciousness – this has been an utter disaster. I primarily blame Linda Wouters – she is the facilitator who has inserted herself into this case and, self-deluded or not, is now victimizing Rom Houben with pseudoscience. I truly feel sorry for Dr. Laureys, who is seeing his representative case buried under the FC controversy, and I can understand his frustration and (sort of) his attempts to redirect public attention at his issues.
But Laureys can no longer ignore the FC controversy or expect the public and the scientific community to just pretend it is not there, ignore the breach of ethics it may represent, and the further victimization of Rom Houben. Science demands transparency. This case demands transparency – it is too much in the public to do otherwise. Either that or it simply cannot serve as a public case to represent anything, and it will fade away as an unresolved controversial case.
Further, the FC raises some troubling questions and should be answered. Is FC being used, or will it be used, to obtain informed consent from Houben regarding any procedures or to direct his care? That could potentially be a violation of his autonomy.
If Dr. Laurey’s hands are tied by confidentiality, then he should stop talking about this case altogether, and he should not be castigating those of us who are trying to put the videos that are being shown to the public into the best scientific context we can. Either that or get permission to go public with all the details.
There are two issues with this case – disorders of consciousness and FC. They can only now be separated cleanly if we investigate and eliminate the FC controversy. Put it to a proper test, and let’s determine what is going on. If it is real, I will happily change my opinion. If it fails under blinded testing, then Houben will be saved from this additional indignity and his caregivers can focus on developing a legitimate method of communicating with him.
Seriously, Dr. Laureys, you cannot ignore and evade the FC issue any longer while still trying to use the Houben case to highlight your research.
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