Tuesday, November 24, 2009

What would be more horrifying than "locked-in" syndrome?


Numerous mass media outlets and blogs are reporting on the misdiagnosis of Rom Houben of being comatose for 23 years when he was really conscious, according to Belgian neurologist Steven Laureys, who has claimed for years to be able to treat patients allegedly in a persistent vegetative state with electric shocks and find that they were really in a minimally conscious state. Videos of Houben show him allegedly communicating via a keyboard which is pressed by a single finger on one hand--but his hand is being held by a facilitator, and he's not even looking at the keyboard. Some still photos show the facilitator looking intently at the keyboard, while Houben's eyes are closed.

James Randi observes that this looks just like the self-deception of Facilitated Communication that was promoted as a way to communicate with severely autistic people, and Marshall Brain at How Stuff Works seconds that conclusion.

I think it's a bit too fast to conclude that Houben's not conscious--brain scans could indeed have provided good evidence that he is. But what would be worse than having "locked-in syndrome"? Having somebody else purporting to speak for you with ideomotor-driven Facilitated Communication, while you were helpless to do anything about it.

I'd like to see some double-blind tests of Houben, where he's asked questions about events that occur when the facilitator isn't present, as well as fMRI results during the process of facilitation (since there are brain activation differences between active and passive activities, which have been used to study such things as the perception of involuntariness during hypnosis--it shows features of both active and passive movement). I'd also like to see further opinion on Laureys methodology and diagnosis--it seems he has significant self-interest in promoting this case.

UPDATE: Brandon Keim at Wired Science has finally asked the questions that those who have reported this in the mainstream media should have been asking.

Here's a 2001 review of the scientific literature on facilitated communication.

UPDATE: The video on this story shows the facilitator typing for him while his eyes are closed and he appears to be asleep.

UPDATE: A Times Online story claims that Houben's facilitator, Linda Wouters, spent the last three years working with Houben to learn to feel tiny muscle movements in his finger, and that Dr. Laureys did tests to validate the technique:

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.”

and

Mr Houben’s “rebirth” took many painstaking months. “We asked him to try and blink but he couldn’t; we asked him to move his cheek but he couldn’t; we asked him to move his hand and he couldn’t,” Mrs Wouters said.

“Eventually, someone noticed that when we talked to him he moved his toe so we started to try and communicate using his toe to press a button.”

It was a breakthrough but 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.

This still seems hard to rationalize with the video footage of the typing occurring while he's apparently asleep. Mrs. Wouters admits the possibility of "tak[ing] over" for him:
“The tension increases and I feel he wants to go so I move his hand along the screen and if it is a mistake he pulls back. As a facilitator, you have to be very careful that you do not take over. You have to follow him.”
UPDATE (November 25, 2009): Neurologist Steven Novella has weighed in. He suggests that Houben may have recovered some brain function and be conscious, but that the facilitated communication in the videos is positively bogus.
I've noted on the discussion page of Dr. Steven Laureys' Wikipedia entry that the paper in BMC Neurology that purportedly included Houben as a subject claims that all patients in the study were in a minimally conscious state (MCS) but had been misdiagnosed as being in a persistent vegetative state (PVS). The criteria of the study say that those that recovered and emerged from MCS were excluded, which seems at odds with claims that Houben's brain function is "almost normal." A story in Nature 443, 132-133 (14 September 2006) by Mike Hopkin, "'Vegetative' patient shows signs of conscious thought," which quotes Laureys, is about a different patient, in a persistent vegetative state, who showed some signs minimal consciousness. When asked to visualize herself playing tennis, for example, she showed corresponding brain activity. But, as that article noted, that kind of neural response isn't necessarily a sign of consciousness:

But what that 'awareness' means is still up for debate. For example, Paul Matthews, a clinical neuroscientist at Imperial College London, argues that the brain imaging technique used cannot evaluate conscious thought; fMRI lights up regions of brain activity by identifying hotspots of oxygen consumption by neurons. "It helps us identify regions associated with a task, but not which regions are necessary or sufficient for performing that task," he says.

Matthews argues that the patient's brain could have been responding automatically to the word 'tennis', rather than consciously imagining a game. He also points out that in many vegetative cases, the patient's motor system seems to be undamaged, so he questions why, if they are conscious, they do not respond physically. "They are simply not behaving as if they are conscious," he says.

Owens counters that an automatic response would be transient, lasting for perhaps a few seconds before fading. He says his patient's responses lasted for up to 30 seconds, until he asked her to stop. He believes this demonstrates strong motivation.

He does admit, however, that it is impossible to say whether the patient is fully conscious. Although in theory it might be possible to ask simple 'yes/no' questions using the technique, he says: "We just don't know what she's capable of. We can't get inside her head and see what the quality of her experience is like."

But then again, as someone who's been reading a lot of literature on automaticity and voluntary action lately, it appears to me likely that a lot of our normal actions are automatic, the product of unconsciously driven motor programs of routine behavior.

Laureys is quoted in the article with a note of skepticism:

"Family members should not think that any patient in a vegetative state is necessarily conscious and can play tennis," says co-author Steven Laureys of the University of Li├Ęge, Belgium."It's an illustration of how the evaluation of consciousness, which is a subjective and personal thing, is very tricky, especially with someone who cannot communicate."

The article goes on to note that this woman, who is possibly somewhere between PVS and MCS, "seems to have been much less severely injured than the permanently vegetative Terri Schiavo" (as the report from her Guardian Ad Litem (PDF) made clear).

If Houben is in a minimally conscious state, which he apparently was in order to be included in Laureys' paper that his Wikipedia page says published the Hoeben case in 2009, that appears to contradict news claims that Houben's brain function is "nearly normal," unless he has recovered further function since that paper was written.

UPDATE (November 26, 2009): This footage of Houben and Mrs. Wouters from Belgian (Dutch) state television seems to be the most extensive footage of the facilitation process, and while it starts out looking slightly more plausible, it also clearly shows fairly rapid typing while his eyes are closed (and the camera zooms in on his face).

UPDATE (November 28, 2009): Dr. Laureys and Dr. Novella have had some interaction, which demonstrates that Laureys doesn't get it.

UPDATE (February 15, 2010): Dr. Laureys almost gets it now, and has done additional tests, which have shown that the communications are coming from the facilitator, not Houben.

UPDATE (February 20, 2010): David Gorski at the Science-Based Medicine blog has a bit more from the Belgian Skeptics, who were involved in the test.

3 comments:

Neural Gourmet said...

My local paper had a breathless AP version of this story on its front page this morning and like Randi I was disgusted with the completely credulous reporting. You're right that we don't know enough to say one way or the other what's going on, but I would have hoped the AP would have higher standards than to just uncritically promote this story without even giving the fact that he's reportedly communicating with the help of a facilitator.

Peevis said...

So assuming it comes out that they it is really him speaking...

I Talked about this with someone yesterday and what I really want to know is if his sense of time has been changed after what amounts to 23 years of wandering around in his own brain.

Reed said...

According to reports, Houben is actively writing articles, and a book as well?

Especially if a lucrative book deal is in the works, I doubt anyone involved will be interested in double-blind testing in the foreseeable future. Skeptics be damned!