Another contender for the worst medical reporting ever: “Coma man”

Remember how I nominated a truly execrable local news report about Desiree Jennings as a serious contender for the worst reporting of the year, perhaps even of the decade? It had everything, and I seriously doubted that anything would challenge it for credulous supremacy any time soon.

How wrong I was. Check out this video:

Then read these stories:

What a compelling story! Or is it? Let’s find out by first looking at the story itself as told in the Daily Mail:

A car crash victim has spoken of the horror he endured for 23 years after he was misdiagnosed as being in a coma when he was conscious the whole time.

Rom Houben, trapped in his paralysed body after a car crash, described his real-life nightmare as he screamed to doctors that he could hear them – but could make no sound.

‘I screamed, but there was nothing to hear,’ said Mr Houben, now 46, who doctors thought was in a persistent vegatative state.

‘I dreamed myself away,’ he added, tapping his tale out with the aid of a computer.

If this story is as described, one can only imagine how horrible this must have been. As with the case of Desiree Jennings, only a cad could question such a seeming triumph of the human spirit over such horrific adversity, right?. Well, maybe. Maybe not. I’m not alone in thinking that there’s something very, very suspicious about this story. First of all, I’m not sure what to make of the claim that Houben was misdiagnosed as being in a persistent vegetative state. True, there’s no reason to doubt that that was his diagnosis for 23 years. What I find puzzling is how it was determined that Houben wasn’t in such a state and that he had in fact been completely conscious all those years. For instance, what specific tests were used to determine that his brain was functioning “almost completely normally” that couldn’t have been used several years ago?

The answer may be suggested by Dr. Steven Laureys, the Belgian neurologist announcing this finding,; who unfortunately also used the announcement to hype a study he published back in Feburary that concluded that over 40% of patients with disorders of consciousness are misdiagnosed as being in a vegetative state. Based on that paper and some of Laureys’ other work, my best guess is that Laureys used some of the clinical tests described in the paper above, possibly also with functional MRI, given that he concluded in a recent review for which he was co-author that fMRI is potentially very useful in differentiating vegetative and minimally conscious states from patients who have some consciousness. He also argued that fMRI can be a prognostic test that will determine who is and isn’t likely to emerge from a coma.

Be that as it may, I had to wonder: How was it originally suspected that Houben had some consciousness? Yes, his mother thought he responded to her, but so did Terry Schiavo’s family think the same about her. Grief, hope, and confirmation bias make it very easy to interpret unaware movements of a comatose patient as being purposeful. We learned this from the Terry Schiavo case, and there’s no way of knowing whether this very human tendency to interpret reflexive reactions as being purposeful.

So I’m not going to question whether or not Houben was truly “misdiagnosed” as being hopelessly comatose when in reality he actually had what is known as the “locked-in” syndrome. Locked-in syndrome is a condition, usually caused by a brainstem stroke but also sometimes caused by traumatic brain injury, in which the patient is fully aware and awake but unable to communicate because nearly all voluntary muscles are paralyzed. Usually, locked-in patients can only blink their eyes. From my perspective it is a fate worse than death. The most famous case of being locked-in is Jean-Dominique Bauby, a French journalist who developed locked-in syndrome after suffering a stroke in 1995. Bauby could communicate through blinking his left eye, which was the only part of his body over which he had any control left. Amazingly, he was able to dictate slowly and painfully his experiences by blinking when the correct letter of the alphabet was reached by the person transcribing his memoirs, which were published as The Diving Bell and the Butterfly and later made into a movie. Given the information reported, I have no idea whether Houben is comatose or locked-in, and hazarding a guess would be foolish in the extreme. It doesn’t matter, actually, for purposes of this discussion whether Houben is in a vegetative or minimally conscious state or is locked-in. It really doesn’t. What does matter is that the video above appears to be a case of the use of facilitated communication, a modality that was originally used to “free” autistic children to speak. If you doubt it, take a look first at how it’s allegedly done:

…much more was to come when a fellow speech therapist discovered that it was possible to discern minuscule movements in his right forefinger.

Mrs Wouters, 42, was assigned to Mr Houben and they began to learn the communication technique that he is now using to write a book about his life and thoughts. “I thought it was a miracle — it actually worked,” she said.

The method involves taking Mr Houben by the elbow and the right hand while he is seated at a specially adapted computer and feeling for minute twitches in his forefinger as his hand is guided over the letters of the alphabet. Mrs Wouters said that she could feel him recoil slightly if the letter was wrong. After three years of practice the words now come tumbling out, she said.

Look at the video again. Consider the claim and compare it to what you see. Here is someone who is rapidly going from letter to letter, yet it is claimed that Ms. Wouters is “feeling for minute twitches” in Houben’s forefinger. Does it seem plausible that these minute twitches can lead to such rapid typing, even with practice? Not to me. To me this looks like a clear case of facilitated communication. Basically, it’s the same principle as a ouija board; it’s the ideomotor effect. All it is in general is what the “facilitator” hopes or wishes it to be, whether she even realizes it or not. Examining the video, it looks to me as though part of the time Mr. Houben is not even looking at the keyboard; yet his assistant keeps typing. At one point it looks as though Mr. Houben’s eyes are closed. If that’s not enough for you, then look at this video, where it is even clearer that Houbens is not even looking at the keyboard at various points when his facilitator is typing. Consider this excerpt from the discussion of FC in The Skeptic’s Dictionary:

The Frontline program showed facilitators allegedly describing what their clients were viewing, when it was clear their clients’ heads were tilted so far back they couldn’t have been viewing anything but the ceiling. When facilitators could not see an object which their client could see (a solid screen blocked each from seeing what the other was seeing) they routinely typed out the wrong answer. Furthermore, FC clients routinely use a flat board or keyboard, over which the facilitator holds their pointing finger. Even the most expert typist could not routinely hit correct letters without some reference as a starting point. (Try looking away from your keyboard and typing a sentence using just one finger held in the air above the keyboard.) Facilitators routinely look at the keyboard; clients do not. The messages’ basic coherence indicates that they most probably are produced by someone who is looking at the keyboard.

Tell me that this isn’t what’s going on here. I sure looks like that’s what’s going on to me. Of course, conceptually it would be very, very easy to test objectively whether it is Mr. Houben who is communicating or his facilitator Ms. Wouters (although admittedly it might tbe somewhat technically difficult). First and foremost, if this is an objective phenomenon, it should be possible for others to learn how to detect and recognize the twitches in Houben’s hand and thereby type. A quicker way, however, would be simply to set up a test so that Houben’s facilitator can see his arm and the keyboard but nothing else. Then show Houben a series of objects and ask him to identify them. Then see how many he gets right. If Houben is really communicating this way, then it shouldn’t matter whether the facilitator can see what Houben sees or not. All she needs to be able to see is the keyboard.

The closest we get to that is this:

The spectacle is so incredible that even Steven Laureys, the neurologist who discovered Mr Houben’s potential, had doubts about its authenticity. He decided to put it to the test.

“I showed him objects when I was alone with him in the room and then, later, with his aide, he was able to give the right answers,” Professor Laureys said. “It is true.”

Sorry, but that’s just not good enough. There are any number of ways that Professor Laureys could be fooled. This is the same sort of justification used for FC for autistic children. It’s all anecdotes, with no evidence that this is anything other than wishful thinking and the ideomotor effect. Even more telling are the reports that it took two or three years for Wouters to learn how to “read” Houben, which is very much like the claims of boosters of FC that it only “works” if there is a special bond between the facilitator and the patient. The bottom line is that, whether Houben is conscious or not, what is being shown on the video above is clearly nothing more than facilitated communication. It is certainly not evidence that Houbens is conscious, much less so eloquent. Whatever testing is done needs to be done under more controlled circumstances.

Another thing I’m not sure of, having insufficient information to make an informed speculation, is whether Professor Laureys has let himself be duped or whether he’s party to some sort of deception. I’m inclined to give him the benefit of the doubt and conclude the former. After all, as James Randi and others have shown time and time again, scientists are among the easiest to fool. Unfortunately, the press, apparently, is even easier to fool. Even Dr. Nancy Snyderman appears to have fallen for it to some extent:

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One of the only skeptics appears to be bioethicist Dr. Arthur Caplan, who correctly notes that this is facilitated communication and observes:

To add to my skepticism, Houben reportedly has been lying in a bed with relatively little stimulation and communication from others for 23 years. This is worse than being in solitary confinement for a very long time.

That kind of situation should have had deleterious effects on his mind. Imagine 23 years locked in to your own body with relatively little contact from anyone and no ability to communicate at all. Yet the news reports have him talking lucidly and with remarkable precision. There is little hint of anger or mental disturbance from what surely had to have been a hell-on-earth experience.

Indeed. The Amazing Randi is even harsher, declaring that this cruel farce has to stop. At the risk of going against Randi in one issue, however, I don’t necessarily agree with him that Houben is “is not aware of what is going on.” He very well may be. Professor Laureys may well have been correct, and Houben may well be locked-in and not in a vegetative state. After all, if Houben is locked-in, for purposes of determining whether the facilitated communication Wouters is doing is bogus or not, it’s the same thing. It’s not as if Houben would be able to communicate his objections or make it known that it is not him doing the communicating. Indeed, it would even be more despicable if Houben is, in fact, aware of what’s going on but unable to tell anyone what is really going on. Indeed, for purposes of determining if the FC on display here is bogus (which it almost certainly is), it’s irrelevant whether Houben is actually in a vegetative state or in a locked-in state, and that’s why I don’t (and won’t) speculate one way or the other whether Houben is conscious or not. There’s just not enough information to tell. There is, however, more than enough information in those videos to conclude that the FC shown in them is clearly the result of the facilitator communicating, not Houben.

Regardless of whether Houben is locked-in or in a vegetative state, what is being shown on the videos above and described in the the news reports is indeed, as Randi put it, a cruel farce that allows the same cranks who claimed that Terri Schiavo wasn’t in a persistent vegetative state to hijack the Houbens case as “proof that they might have been right.” More importantly, it’s horribly cruel to Houben’s mother, but it’s even crueler to Houben himself if it just so happens that he is conscious but locked-in. In that latter case, this “facilitator” has destroyed any chance that Houben will be able to figure out a way of communicating with the outside world, and that possibility will be precluded as long as her FC-created communication is accepted at the only way Houben can communicate.

ADDENDUM: Steve Novella has commented on the case over at Science-Based Medicine.

ADDENDUM #2: Here is a video of an “interview” with Houben from Belgian television. In this video it is even more obvious that Houben has his eyes closed at several points in the “interview,” but Wouters keeps typing away.