Update on “coma man” Rom Houben: Dr. Steven Laureys still just doesn’t get it

The day before the Thanksgiving holiday, I wrote about a serious contender for the worst medical reporting of the year, if not the decade, specifically how credulous reporters had swarmed all over the case of a Belgian man named Rom Houben. If you don’t remember or haven’t heard about the details, feel free to peruse the link I just cited, but I’ll give you the brief rundown. Basically, Rom Houben is an incredibly unfortunate man who was involved in a motor vehicle crash 23 years ago at age 23. As a result, he suffered a severe head injury and was diagnosed as being in a persistent vegetative state. Recently, in a number of news reports discussed by James Randi, Steve Novella, and myself, among others. In them, Houben’s doctor, Dr. Steven Laureys, announced that Houben is in fact conscious, having been misdiagnosed 23 years ago and the misdiagnosis not having been discovered until now. That in and of itself was not what brought serious skepticism upon the story. After all, it’s possible that Houben was misdiagnosed, given that approximately 40% are, at least according to the study by Laureys that was cited along with the announcement that a man in a coma for 23 years is supposedly conscious. It’s certainly possible that Houben has locked-in syndrome and was conscious all this time but unable to communicate because of total paralysis, a condition that I consider a fate worse than death.

What brought so much skepticism down upon Dr. Laureys was how Houben supposedly communicates. Basically, his speech therapist claims to be able to detect a minute twitching in the forefinger of Houben’s right hand and that that twitching can guide her to letters on a touch screen, allowing her to translate Houben’s attempts to communicate into words on that screen by helping his hand to the letters the twitches in his finger supposedly guided her towards. The problem is, as was pointed out by every skeptic who wrote about this, including bioethicist Art Caplan, that this is clearly nothing more than facilitated communication (FC), a discredited technique that has been shown time and time again to be nothing more than the ideomotor affect combined with the wishful thinking of the “faciltiator.” To anyone with a critical eye who looked at the videos of Houben, his finger seemingly effortlessly gliding with only a little help to letter after letter, even at times when he was not looking at the keyboard or clearly had his eyes closed, it was obvious that what was going on was pure FC, nothing more. Indeed, it was so blatant that it was breathtaking in its audacity. I’ll include the clips again, so that you don’t have to go back to look at them. Judge for yourself:

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There is also this interview from Belgian television. Clearly, given the dexterity with which Ms. Wouters moves Houben’s finger is incredibly improbable if she really is detecting minute motions of his fingers, particularly given that Houben isn’t even looking at the screen at multiple points in all of these videos.

The other thing that has to be emphasized is that neither Steve Novella nor I even wanted to speculate on the accuracy of Dr. Laureys’ reassessment. We simply don’t have enough information. What we do have enough, however, to tell that what appeared to be going on in the numerous videos of Rom Houben is almost certainly FC. Moreover, from my perspective, if Houben really is conscious, the FC that is going on is a distraction, a red herring, that will prevent him from ever really being able to communicate with the outside world as long as this farce is allowed to continue. Imagine, if you can, being conscious but completely paralyzed and unable to communicate. Then this woman, with nothing but the best intentions (as, indeed, most practitioners of FC have) claims to be able to communicate for you and starts coming up with these elaborate descriptions of what it’s like to be locked-in and how great it is to be able to communicate again. You are reduced to being nothing more than a puppet.

Unfortunately, Dr. Laureys, stung by the criticism of the FC, just doesn’t get it. He hasn’t gotten it from the beginning. At first, he tried to ignore the issue of FC and claimed that he had done tests sufficiently rigorous to convince him that Houben’s communication is real, without really specifying precisely enough what he did. Now, he has decided to respond in an interview with New Scientist, and, sadly, his response is about as obtuse as it gets. Seldom has anyone missed the point by a wider margin than Laureys did in this interview:

From the online videos, it looks as if when Rom Houben types, his eyes are closed, he types surprisingly quickly and that his hand is guided by an aide. Can we be sure the words attributed to him are really his?

What is happening now is very regrettable. I feel sorry for Rom and about what some people have written on the net. He knows what people are saying, and one can only try to imagine what he has already been through. 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.

Given that my original post is linked to in this article, I have to view this as a shot right across my bow. First off, no one–I repeat, no one–is saying that it is impossible that Mr. Houben is a “cognitive being” or for him to be unconscious. No one, least of all me. Dr. Laureys is happily tearing apart a straw man, all the while trying to claim the high ground by painting those who question whether Houben’s communication is real or due to nothing more than FC as nasty, insensitive louts who are trying to argue that Houben can’t possibly be conscious and that this must be a scam. That is not what is being argued, and I hereby call Dr. Laureys out for his logical fallacy and his unjustified attack on skeptics who are concerned that, whatever Houben’s conscious state, the videos used to show him “communicating” almost certainly are not evidence that Houben can communicate. They are almost certainly nothing more than his “facilitator” using FC and therefore, as Randi described it, a cruel hoax. I suspect that Dr. Laureys has allowed his personal emotions and connection to Rom Houben and his family cloud his objectivity. Rather than asking himself whether he might have made a mistake, whether he might not have been skeptical enough, he has retreated to “circling the wagon” and digging in more deeply to defend his original position, while representing himself as a skeptic:

I accept some people may have been insensitive, but could it be possible that he isn’t really communicating through the finger-guided touch screen?

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.

I do, Dr. Laureys, and I highly resent Celeste Biever’s implication in her question that I was in any way “insensitive” in my previous post, given that she linked to it in her article as an example of the criticisms of the coverage of the Houben story. It is clear that what is being shown on the videos on TV and the Internet is almost certainly FC. It beggars the imagination that Houben could type that fast, even with assistance. Still, Dr. Laureys shouldn’t feel too bad. Many are the scientists who have been fooled by various pseudoscience, be it paranormal phenomenon or quackery like facilitated communication. That’s why it has persisted for so long and took so long to be scientifically discredited. Even after FC has been thoroughly debunked from a scientific standpoint, it still persists in all too many places. I am, however, somewhat surprised that someone who has made his living taking care of people in vegetative states and comas has never heard of FC before. True, it’s been mostly used for autistic children and children with severe mental retardation, but it’s also been used for patients who are unable to communicate for other reasons.

If Dr. Laureys is (or was) so ignorant of FC that it never occurred to him that this method being shown him by Ms. Wouters and Houben’s family was classic FC, he’s also probably not aware of the harm that has been done using FC. Parents have been accused and convicted of child sexual abuse on the basis of FC-assisted “testimony” from children with severe developmental disabilities. Worse, as I said before, if Houben really is conscious, as Dr. Laureys postulates, then Linda Wouters, his “facilitator,” has, knowingly or unknowingly (most likely the latter), stolen whatever chance Houben might have had to be able to communicate with the outside world. Her apparently well-meaning woo has arguably harmed Houben. Sadly, Dr. Laureys just doesn’t get it:

Did you ever communicate with him in any other way?

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.

This is a classic case of wanting to have it both ways. After all, it was Dr. Laureys who used Houben as the human face of his study published earlier this year suggesting that over 40% of patients with diagnoses of persistent vegetative states may in fact have some level of consciousness. Dr. Laureys used Houben to make a point, and it has backfired spectacularly on him. No doubt Dr. Laureys thought he had a dramatic case that would capture the imagination of the world. Little did he know that he did have a case that dramatic, just not in the way he had originally thought. The FC issue has taken over, as well it should. Dr. Laureys may feel frustrated that it has overshadowed the message he had meant to spread; he probably also feels as though his competence is being directly challenged, hence his defensiveness. In brief, he’s let his sense of professional worth become tied up in this case, which is unfortunate. It’s preventing him from thinking critically, leading him to attack another straw man.

No one is asking for Houben’s medical records to be posted on the Internet. What skeptics are asking for is objective testing of the claim that Houben is communicating through a facilitator responding to minute twitches in his forefinger. If Dr. Laureys already has videos showing that our concerns are unjustified and that Houben can communicate, for instance, the identity of objects that Wouters can’t see, does anyone honestly think that Houben’s family would refuse to allow them to be made public? Personally, I doubt it. And if they did, or if they refused to allow some very simple objective tests to rule out the possibility that it is Wouters who is communicating, not Houben, I’d start to become very suspicious. As of now, I don’t see anything that can’t be accounted for by a mixture of wishful thinking on the part of the family and LInda Wouters and a mixture of unfamiliarity with FC, how thoroughly it’s been debunked, how easy it is to be fooled by it, and what harm it’s caused, and a self-image that too many scientists have, namely that they are too skeptical to be so easily fooled. Unfortunately, apparently Dr. Laureys has not taken to heart Richard Feyneman’s admonition, “The first principle is that you must not fool yourself–and you are the easiest person to fool.”

Here’s what I wish Dr. Laureys would do. Forget the pride, forget his shock and dismay at how the issue of FC has distracted everyone from the message he wanted to communicate. There’s nothing he can do about what’s happened now, and the more he tries to downplay it or ignore it, the more he risks being seen as a willing accomplice or as having something to hide. In fact, he would do well to invite James Randi himself over to help him evaluate Rom Houben and his “faciliator” Linda Wouters. At the very least, he needs to provide more evidence that Wouters really can detect minute movements of Houben’s finger and use them to translate his thoughts into words, regardless of who produces it. Right now, it looks to me as though pride is getting in the way of his doing what needs to be done.