It’s pretty easy to hoax people. We all want to be deceived, but only up to a point. Some hoaxes are fun and pleasant, others malicious and unpleasant. We’d like a way to tell the difference (Robert Carroll).

Jul 22, 2012

Can Vegetable Patients Communicate?

Rom Houben Case

Rom Houben is a 48-year-old Belgian man presumed comatose and in a vegetative state for 23 years after a near-fatal automobile accident. He lay in bed day after day, responding to no one.

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In 2006, doctors performed a brain scan and made a horrifying discovery: Houben is most likely suffering from "locked-in syndrome," completely paralyzed but entirely conscious. The special diagnosis was rstablished by Belgian neurologist Steven Laureys with the help of modern brain imaging techniques and equipment.

The affliction called "locked-in syndrome," perhaps best known to the general public by its depiction in the 2007 Academy Award-nominated French film "The Diving Bell and the Butterfly," which was written (actually, transcribed from a series of eye movements) by a stroke sufferer named Jean-Dominique Bauby.

Houben made international headlines when, with the help of a therapist, he began communicating through a computer by typing into a keyboard with his right hand supported by a communication facilitator. He was interviewed by numerous news agencies, and soon, he was at the center of the heated debate over all pros and cons of keeping vegetative patients alive.

There was just one small problem -- it was not supported by the independent scientific research. Houben's therapist was using a method called "facilitated communication," where in theory, nonverbal patients can type or write while a therapist supports their arm and hand. FC became hugely popular in the early 90s among parents desperate to communicate with their kids on the autism spectrum. But study after study revealed that it was actually the therapists speaking for the patients.

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The staff at Houben's care center - the Coma Science Group at the University of Liege - 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 carried out those tests again with monitoring of the independent scientists, and the 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. Therefore in results of the following test were not surprising. 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.

The real horror in this case is that brain scans and other evidence suggest the possibility that Houben may well be conscious and a victim of locked-in syndrome. The cruel farce of FC may actually delay research into credible techniques that would allow Houben and others like him to achieve real communication with the outside world.

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Can they talk?

The American Psychological Association has issued a position paper on FC, stating that "Studies have repeatedly demonstrated that facilitated communication is not a scientifically valid technique for individuals with autism or mental retardation" and describing FC as "a controversial and unproved communicative procedure with no scientifically demonstrated support for its efficacy."

I guess that there is no single yes or no answer, if the FC method is an actual communication with the paralyzed patient or it is a wishful thinking of the assigned speech therapist. While few studies have indicated that facilitated communication does tap into the mind of a person who heretofore had been incommunicado, the vast majority of the studies unfortunately have shown that facilitated communication only taps into the beliefs and expectations of the facilitator. Many control studies have failed to produce strong evidence that facilitated communication works.

Defenders of FC routinely criticize as insignificant or malicious those studies that fail to validate FC. Yet, it is unlikely that there is a massive conspiracy on the part of all those who have done research on this topic and have failed to arrive at findings agreeable to the FCI.

Still, the FC supporters stay firm on their method validity: “It’s easy to say this method is not valid, but to prove that it is not true is actually very difficult," Dr Laureys said. That is true, Rom Houben unfortunately cannot confirm beyond all doubts that it is actually him who speak, but it is easy hard to confirm that it is not him at all.

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