Update on the case of “Coma Man” Rom Houben: Facilitated communication is still woo

A couple of months ago, I wrote about a case that demonstrated conclusively just how easily even respected researchers can be taken in by psuedoscience. Of course, I was not alone. A number of others, including Steve Novella, James Randi, bioethicist Art Caplan, Hank Schlinger, and myself, recognized the reports that a Belgian man named Rom Houben, who had been in a coma for 23 years, was actually conscious and could communicate with the help of a “facilitator” named Linda Wouters was in fact nothing more than the example of the quackery known as facilitated communication. This is a particularly pernicious form of pseudoscience that has resulted in great harm. False accusations of abuse have arisen from questioning of children with severe, nonverbal autism, cerebral palsy, and other conditions rendering them nonverbal; lives have been destroyed.

What is facilitated communication? For those who don’t remember or have never heard of it before, advocates of FC tout is as a means of communicating with patients who cannot communicate for whatever cause, brain damaage, stroke, paralysis, or other neurological conditions like autism. The basic idea is that a “facilitator” holds the patient’s hand over a keyboard or a board with pictures or letters and guides the patient’s hand to them in order to “facilitate” communication. The claim is that such patients can somehow signal their intent in response to questions by moving towards a letter or a picture and that the facilitator can understand and interpret what can sometimes be small motions towards letters or pictures, even to the point of reciting poems or writing long and eloquent articles. In reality, FC is nothing more than the ideomotor effect writ large, in which a “facilitator” is in reality doing the communicating, not the patient, as I described in my two previous posts on this case. Just look at the videos I included in each post if you don’t believe me. As we shall see shortly, the story was just too good to be true.

To recap, Rom Houben had been previously thought to be in a persistent vegetative state and thus not conscious and not able to communicate in any way. Then in November Houben’s doctor, Dr. Steven Laureys, announced to the press as part of interviews after a press release for a new study of his that Houben is in fact conscious, having been misdiagnosed 23 years ago and the misdiagnosis not having been discovered until now. The study itself involved using newer diagnostic tests to reevaluate patients diagnosed as being in a persistent vegetative state, and Laureys concluded that over 40% thought to be in such a state actually have some level of consciousness. In and of itself, that is an important observation. Unfortunately, Dr. Laureys chose to use Rom Houbens as an example of one of these patients, and that’s where the trouble came in. As part of the evidence that Houbens is conscious, Laureys included the facilitated communication, which had become quite spectacular, with Wouters attributing all sorts of heartrending observations to him, statements such as describing the discovery that he was conscious as his “second birth.” When asked how he survived 23 years in such a state, he replied through his facilitator, “I meditated, I dreamed that I was somewhere else.”

Through it all, Dr. Laureys stubbornly clung to his belief and story that Mr. Houbens really was communicating through minute motions of his fingertip, one of the only motions that Mr. Houbens could make, and that Houben’s tiny movements of his finger were being “translated” by Ms. Wouters into pointing and typing on a keyboard. Unfortunately, as I and others pointed out before, in many of the videos there were times when Houbens was typing when his eyes were clearly closed or he wasn’t even looking anywhere near the vicinity of the keyboard, making it very difficult to imagine how he could see the letters to point at them but easy to imagine how Wouters could have been guiding his finger to each letter. Even more difficult to believe, Houben’s finger flew between keys as fast as some of the best hunt and peck typists I’ve seen. It was thus very tough to believe how Houbens, with all the neurologic damage he suffered and his new diagnosis of locked-in syndrome, could possibly manage to twitch his finger that quickly and accurately. In most cases of communication with the locked in or near locked in, communication is painstakingly slow; for example, Jean-Dominique Bauby. When all this was pointed out to Dr. Laureys and he was questioned about whether some sort of blinded test had been done in order to exclude the possibility that Wouters was guiding Houben’s hand, he haughtily dismissed such concerns, asking us in essence to trust that he, as a “scientist and a skeptic,” had convinced himself that Houbens was communicating, the implication being that you should too. We now know that Laureys apparently did a simple test but didn’t do any real controls that would have ruled out the the facilitator as the person who was really doing the communicating.

Now he has done those tests. This is a good thing for which Dr. Laureys should be congratulated, even as I chastise him for having been so easily duped and having clung so stubbornly to his view. Still, better late than never. According to this article in Der Spiegel (German version, English version), the whole thing was exactly as the skeptics thought it was:

The staff at Houben’s care center first tried an on-screen keyboard that he could operate using his right index finger, which is not fully paralyzed. For a while, it seemed like a good idea and, after some practice, Houben was able to type rather quickly. He made many mistakes, but his messages were understandable. Still, using that method required the assistance of a speech therapist, who stood behind him to support his hand.

At one point, Laureys, the neurologist, claimed that he had ruled out the possibility that it was actually the speech therapist doing the writing. But it turns out that his checks weren’t quite thorough enough. Obtaining reliable results requires a rather protracted procedure. Patients with serious traumatic brain injuries are not always capable of following difficult instructions. They also sleep a great deal, and sometimes they sink into extended periods of delirium. In order to rule out false negative results, repeated tests need to be conducted over the course of several weeks.

Laureys has now carried out those tests, and his results hold that it wasn’t Houben doing the writing after all. The tests determined that he doesn’t have enough strength and muscle control in his right arm to operate the keyboard. In her effort to help the patient express himself, it would seem that the speech therapist had unwittingly assumed control. This kind of self-deception happens all the time when this method — known as “facilitated communication” — is used. (As a result, the things that Houben was attributed as saying to SPIEGEL for an article printed in November 2009 were also not authentic.)

In the more recent test, Houben was shown or told a series of 15 objects and words, without a speech therapist being present. Afterward, he was supposed to type the correct word — but he didn’t succeed a single time.

None of this should come as any surprise. It was only Laureys naivete and arrogance that could have led him to react to criticism the way he did. I can understand how he was probably miffed that the whole issue of FC had overshadowed the findings of his study, which actually did report important findings, but he has no one to blame but himself. When people familiar with FC and how belief that FC has opened up communication with people formerly thought unreachable tried to warn him, he dismissed such concerns, apparently thinking himself too scientific and too skeptical to be so easily fooled. Clearly, Dr. Laureys forgot the first principle of science so well enunciated by Richard Feynman:

The first principle is that you must not fool yourself – and you are the easiest person to fool.

Dr. Laureys epitomizes this observation. At least he finally came around–mostly–which is the difference between a scientist and a crank.

Perhaps the most disturbing part of this whole story is that it is still possible that Houbens may be conscious. If he is, in fact, conscious, then his facilitator stole from him his voice, speaking for him and manipulating him like a puppet to say what she thought he must be feeling. That she was probably unaware that that is what she was doing and completely believed that she was helping him to communicate does not excuse this. Imagine, if you will, that you are Rom Houben. Imagine further that you are conscious but have no motor control over your body other than (apparently) the tip of one finger. Finally, imagine that some fool credulous woman has come to believe that she can translate your intentions and thoughts by moving our finger around a touch screen keypad. Not only has your voice been stolen, but the belief of your family and your doctor that FC has allowed you to communicate has guaranteed that the team taking care of you will stop looking for ways to communicate with you or, at the very least, not look very hard.

I can’t even begin to imagine how horrible that would be.

Fortunately, the search for a means of communicating with Houben has resumed:

Now the work with Houben will have to start all over again. But there is one thing for sure — images taken of his brain activity reveal that it is behaving only slightly differently from that of a healthy brain. As a result, researchers are fairly certain that Houben is conscious — and they find themselves in the desperate position of a rescue team trying to dig out a person from under the rubble.

Attempts to use a pedal, which Houben pressed with his right foot, had already failed before. He actually was able to press the pedal down, but spasms usually made him unable to lift his foot back up. “We’ll simply have to find another way to him,” Laureys says.

Let’s all hope that if Houben is really conscious Laureys succeeds now that he has realized that he had been duped. I’m glad that Laureys is finally looking for other ways to communicate with Houben, but irritated that his intransigence and naivete delayed the search at least three months, if not many more. Rom Houben payed the price. The rubble on top of him, to follow the analogy used in the article, is much higher than it needed to be because Laureys inintentionally piled more rocks on while trying to dig him out. Fortunately, he has realized the error of his ways, at least in Houben’s case, and is trying to rectify the situation. Also, it should not be forgotten that his other work trying to find ways to communicate with victims of severe neurological damage or conditions that render them unable to communicate is very important.

Finally, now that it’s been clearly shown that Houben was not communicating through FC, that leaves just two final questions. First, what will happen to Linda Wouters, the speech therapist and believer in FC who led Houben’s family and medical team so far astray through her use of bogus FC to convince them that Houben was communicating with them? Second, now that Dr. Laureys has admitted that it was not really Houben communicating through FC but rather Wouters, will the press lavish as much attention on this story as it did in November on the original reports of the “miraculous” results FC had allegedly produced in allowing Houben to communicate? Thus far, all we see is a single report in a German publication. Will we soon see followup stories on the international news organizations that publicizd the original story in November?

I’m not going to hold my breath waiting.