Nov 27 2009

Dr. Laureys Responds Regarding Man in Coma

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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20 responses so far

20 Responses to “Dr. Laureys Responds Regarding Man in Coma”

  1. Tom Nielsenon 27 Nov 2009 at 8:32 pm

    You would think that if Dr. Laureys took a stand against the FC issue, he would not only get rid of the FC part of the case, and thus gaining the public’s focus on the important medical part, but also gain the respect of the medical community and others.

    He do seems overly defensive in the interview, as if his competence has been called into question, which it clearly has not.

  2. BingMcGhandion 27 Nov 2009 at 11:33 pm

    It’s weird. We have really an important diagnosis here, coupled with a massive lapse in judgment.

    I saw the following on the AP:

    Laureys’s team is in the process of producing a scientific study validating the controversial practice. He refused to discuss it in the media, saying he will follow the classical route of scientific peer reviews and publication in specialized journals before making it public to the world at large.

    He hopes it will be ready “in the not too distant future.”

    Sounds like he’s already committed to the outcome (though it could be phrased oddly here), which worries me. But then again, he’s not bonking the facilitated communicator on the head constantly, and that’s worrisome enough.

    HJ

  3. gdjsky01on 28 Nov 2009 at 12:02 am

    I don’t understand. Why is it not friggin’ obvious to Dr. Laureys that he his UNDERMINING his science. Which does he really care about? The press coverage? Or his patient? If the latter, he needs to stop the FC right now. But he show know, without the woo and lies of FC he won’t get the press coverage. Unless of course the does some ACTUAL breakthrought science. I can not help but think he’s just trying to cash in. Otherwise as a scientist, he’d know what the right thing to do is.

  4. nalon 28 Nov 2009 at 1:52 am

    I get the feeling that this whole episode has snowballed way beyond what Dr. Laureys imagined. Houben’s parents were desperate for some good news and Dr. Laureys told them that their son has “some” consciousness. The parents heard what they wanted to hear, that their son has consciousness, brought in the facilitator and are now ecstatic with the (fake) results. If Dr. Laureys condemns the FC, he risks angering the parents who could turn against him. Additional access to Houben would be denied, and access to future patients might be jeopardized.

  5. Joeon 28 Nov 2009 at 6:05 am

    The blinded test is trivial, it can be done in minutes with the present personelle. According to the paper, he can hear those around him- so fit him with headphones and then ask him to type the letters, numbers and/or words that he hears.

  6. jonoon 28 Nov 2009 at 7:33 am

    This is way beyond Dr. Laureys I think. I saw this reported as ‘Man was fully conscious in coma for 20 years and now has full ability to communicate’, that’s how this is being portrayed, far far from the complete or true picture; the media have picked this up and made it their own.
    Of course that doesn’t change the facts at all, but Dr. Laureys is surely concerned now about how an FC controversy will be portrayed by the media, and therefore believed by people. If he comes out and tries to ‘change’ the story the media has, at best they’ll dump him entirely and at worst they’ll drag him and his research and cause through the mud.
    I’m not defending the abuse of a disabled man at all, this is the first I’ve heard of FC and I find the idea grotesque, and I’m sure that Dr. Laureys could have prevented this controvesry had he acted a little earlier. What I’m saying is that the position he’s now in makes it hard to imagine him moving in the right direction from here on, and that our old friend, bad journalism, bears as much blame as anyone.

  7. Steven Novellaon 28 Nov 2009 at 9:15 am

    Trials of FC using headphones has found that they do not work adequately to blind the facilitator. Either fitting her with a headphone to mask noise – does not work well enough, or fitting him with headphones might have enough leakage for the facilitator to hear.

    You need to use a setup where the facilitator is visually blinded to the stimulus, or she needs to be out of the room completely, and monitored to avoid cheating, while unambiguous responses are solicited from Houben. Then she can return and facilitate the answer.

    We’re not starting from scratch here. There is an FC literature and experience to draw upon. With the proper setup it would take minutes to confirm/refute the FC in this case.

    Regarding Laureys, I am not being so judgmental. I think he was just deceived by the FC and is having trouble wrapping his mind around what is happening.

  8. nalon 28 Nov 2009 at 9:59 am

    Here is the Frontline episode, from October 19, 1993, that debunks FC:

    Prisoners of Silence

  9. Anwer Pashaon 28 Nov 2009 at 11:43 am

    I believe that most of PVS, MCS and LiS are conscious from the very first day. In my view they fall into a ‘brain shock’ which may be little different to ‘Coma’ or ‘Deep Coma’. And the problem relates to loss of motor function rather than consciousness. Medical science did well to save their lives but simply there is no success in the issues relating their brains. I have to say that most of these patients are given useless medications since decades and I could not see any way yet to know about consciousness so why not simple ways should be adopted for their improvent like general health care and personal attention and necessary exercises.

  10. Tom Nielsenon 28 Nov 2009 at 11:43 am

    “Regarding Laureys, I am not being so judgmental. I think he was just deceived by the FC and is having trouble wrapping his mind around what is happening.”

    That would explain why his answers are so defensive in the interview.

  11. Steven Novellaon 28 Nov 2009 at 12:05 pm

    Pasha – you cannot make such categorical statements. Many patients in a PVS have such extensive brain damage it is simply not possible that they have any significant consciousness. Others are close to the line between PVS and MCS – and MCS means what it is – minimally conscious. Locked in patients are by definition conscious.

    It is an incorrect assertion that all “coma” is paralysis and not impaired consciousness.

  12. JH-manon 28 Nov 2009 at 12:35 pm

    Two articles from today (in Dutch) on the site of a decent Flemish newspaper:

    http://www.standaard.be/artikel/detail.aspx?artikelid=H12IVKE5&word=houben
    http://www.standaard.be/artikel/detail.aspx?artikelid=5N2IV1VF&word=houben

    Gist of the first article:

    Laureys has been following Houben for 3 years already. Because he found he was certainly not in PVS at the time of the tests, he did the study of the 108 other patients where 40% turned out to also not be as PVS as supposed. Press picks it up and journalist ask for a “human angle” so Laureys offers them the Houben example (with explicit permission). Laureys claims all he had in mind was informing the public specifically about the use of the latest generation of scanners and the Coma Recovery Scale in assessing the degree of consciousness. But the focus came completely on Houben’s individual case.

    Laureys claims no more than showing that Houben was minimally conscious instead of in PVS, and that he was definitely able to (slowly) communicate via one of his feet. “What followed next (ie: the whole FC angle), is not within my responsibility.”

    “That (FC) is a debate that troubles me much more. I myself am sceptical, and that kind of facilitated communication still has a bad reputation, and rightly so. I’m not part of that, and have never suggested using it. This needs to be researched further. Our position is that we want to react about the different means of communication via scientific channels. It seems to me that is the correct approach here.”

    Then he points out his opinion that the sceptics (on the basis of the online videos) should also keep in mind that those videos are not entirely representative of Houben’s journey over the last 3 years. And it ends with him stating that he finds the whole situation very unfortunate for Houben (“he doesn’t deserve to be a circus act”), but also for the many other people who have recently contacted him, largely based on the false hope created by the reporting (“(Our center) isn’t a new Lourdes”).

    The second short article mostly partly repeats the first one, but focusses more on the fact that Laureys has explicitly stated that he personally rejects the FC claims.

    So to me it looks a bit like he wasn’t fully aware of FC at first, and has started informing himself about it a bit more.

  13. HHCon 28 Nov 2009 at 1:45 pm

    Dr. Laureys is content to diagnose Houben as not in a vegetative state. But this is not sufficient. Houben has limited consciousness and therefore cannot elaborate on subjects and refine his categories of thinking to communicate easily with the exterior world. His internal world requires extensive probing, testing and study from a neuropsychological perspective.
    I would not allow charlatans using FC to describe what the level of consciousness and capacity of this human being can be. Regarding Dr. Laureys’ comments about IQ tests on the internet, summary information can be easily released; we would not want his professional, confidential notes published here. But there is nothing sacrosanct about IQ test results that a release from the patient’s responsible guardian couldn’t handle.

  14. Steven Novellaon 28 Nov 2009 at 9:38 pm

    JH – thanks for the additional info. That squares with my impression of what is going on.

    The problem with Laureys’ position about hashing this out in the scientific literature is that it is too late to restrict this case to that. It is already a media circus. He better decide to manage that circus or it will do harm to his case.

    Also, he is seen as Houben’s neurologist. He needs to take a firmer stand against the FC, as it is doing exactly what Laureys’ has been arguing against – robbing Houben’s of his ability to communicate.

  15. JH-manon 29 Nov 2009 at 12:21 pm

    Another small update.

    Laureys appeared on a nationwide actuality TV show this morning, together with a person from the institute where mr. Houben is housed, for a short interview. They both at least gave the impression of being primarily fact-based, for example pointing out that the impressions of family members of patients about their state of awareness should never be taken uncritically. Again it was also addressed that the media reports might come over misleading if anyone would get the impression that Houben acquired his communication abilities *rapidly*. It was a long process of small steps forward over a period of 3 years. Not a sudden miracle.

    First Laureys was given the opportunity to talk about the coma recovery scale and new techniques. FC was specifically addressed right at the end, so obviously I was anxiously awaiting whether this would provide some more clarity. Laureys referred to the existing sceptical scientific studies, but also immediately pointed out that these primarily dealt with children that had been mentally impaired from birth, so that they shouldn’t automatically be considered definitive for this particular case as well.

    The really disappointing aspect was, again, that they continued the mantra that the scientific literature was the appropriate way to address the scepticism, and that this needed further detailed investigation. By now, I really get the impression that Laureys wants this to die out quietly in the media, after which the objective truth will be communicated via the literature without anyone losing his face too much in public. WHY else wouldn’t he himself, or anyone he is confronted with, point out that we don’t exactly need *rocket science* to properly test the FC? It’s not like months of painstaking planning and equipment calibration is needed, lol…

    I don’t think any of the involved parties are willing to go to the bottom of this in public while the whole media is still focussed on the case.

  16. SquirrelEliteon 29 Nov 2009 at 1:40 pm

    This thought occurred to me while writing a comment for an earlier blog about autism, where I was talking about Latin-derived plurals like data and media.

    In this case, the facilitator is the “medium” and without independent and carefully tested confirmation of the communication, this medium has no more validity than using a medium to talk to your dead cow. (I think I borrowed that from the Front Line episode.)

    I think Marshall McLuhan really hit the nail on the head when he said, “the medium is the message.”

  17. Timmehon 29 Nov 2009 at 9:35 pm

    Steve, I just listened to SGU this morning after I had read the New Scientist interview with Dr. Laureys. You really do give him the benefit of the doubt, but when I read that interview (which I realize came out after you recorded SGU) I became convinced that he is being dishonest and not responding in good faith to legitimate skeptical questions.

    The very first question and answer in the interview is a HUGE red flag. Blatent appeal to pity fallacy and “it’s rude to be skeptical” fallacy.

    It reminds me of Richard Heene’s initial response to Wolf Blitzer’s question about when his son said something about it being a “show.” Heene’s response was to not answer the question and to claim that it was rude to ask the question. Dr. Laureys seems to have taken the exact same approach.

    Here is that question and answer in full:

    Q: 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?

    A: 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.

  18. [...] What the expert determined is that the patient is in some form of consciousness, perhaps in minimal conscious state or even better. The expert never claimed that the communication is happening. You may appreciate the followup post to the one you quoted, after the author received a reply from the expert himself. NeuroLogica Blog [...]

  19. El Guerrero del Interfazon 18 Dec 2009 at 1:26 pm

    More news: Rom Houben “wrote” “himself” a letter to De Standaart.

    http://www.standaard.be/artikel/detail.aspx?artikelid=GIK2JAPTG&subsection=3

    More of the same it seems. He “declares” to be happy with the media circus and sad because of the doubts about FC. And asks to let him be happy…

    A note: the facilitator is now called “speech therapist” although apparently Rom still “communicates” only though FC.

  20. [...] of this brings me to the Rom Houben case. If you remember, I blogged about the man who was in a coma for 23 years, except he wasn’t in the kind of coma (persistent vegetative state) his doctors thought. He [...]

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