Story Of Book-Writing Coma Patient Debunked

Belgium's Rom Houben appears to use a touch screen to communicate during a November 2009 interview. i i

hide captionWith the help of a facilitator, Belgium's Rom Houben appears to use a touch screen to communicate during a November 2009 interview. Houben became famous for supposedly communicating through a facilitator after doctors initially concluded that he was in a vegetative state. Now, his doctor says those reports appear to be false.

Yves Logghe/AP
Belgium's Rom Houben appears to use a touch screen to communicate during a November 2009 interview.

With the help of a facilitator, Belgium's Rom Houben appears to use a touch screen to communicate during a November 2009 interview. Houben became famous for supposedly communicating through a facilitator after doctors initially concluded that he was in a vegetative state. Now, his doctor says those reports appear to be false.

Yves Logghe/AP

Earlier Coverage Of Houben's Supposed Communication

Several months ago, a man in Belgium named Rom Houben was said to be writing a book more than 20 years after doctors concluded that a car crash had left him in a vegetative state.

Houben had gained international fame for supposedly revealing his innermost thoughts through a technique called facilitated communication.

Now, it looks like those initial reports were wrong.

Houben's neurologist, Dr. Steven Laureys, says a scientific test has shown that his patient cannot answer even simple questions.

Facilitated Communication May Have Skewed Early Tests

Facilitated communication occurs when a so-called facilitator supports the hand or arm of an impaired person, and helps them use a keyboard or other device. Lots of studies have found that the technique is unreliable. One way or another, the facilitator is communicating, not the impaired person.

In November 2009, Laureys sounded like a believer when he spoke with All Things Considered host Melissa Block. Describing the first time he tested his patient's ability to communicate through a facilitator, he said: "The first word he communicated to me was the word 'key' — my car keys that I just showed him."

Laureys, who leads the Coma Science Group at the University of Liege, now says he was uncomfortable with some of what he said in the interview.

Since then, he has tested Houben and some other patients more rigorously.

Houben Failed A More Scientific Test

A few days ago, Laureys and his research team presented the results of those tests at a scientific meeting in the United Kingdom.

Laureys says they showed the patients an object, or spoke a word. Unlike earlier interactions with Laureys, the facilitator was out of the room for that part of the test. Afterward, the facilitator was brought back in to help the patient answer questions.

"We presented three cases after traumatic brain injury. Two failed the test. And that was including Rom," says Laureys.

In the test, the man who was supposed to be writing a novel failed to identify an apple through facilitated communication.

Laureys says it's possible that Houben passed the earlier test with car keys, which took place years ago, because his facilitator had been in the room and saw the object. Laureys says he tried repeatedly to confirm the result with Houben's original facilitator. But the results were always inconclusive.

"If you have answers like, 'I don't want to do the test' or 'You don't trust me,' those kinds of answers, well then, you cannot say anything," Laureys says.

The recent tests were done with a different facilitator, who was prepared to take part in the more rigorous experiment.

Misdiagnosis Is Possible, But Miraculous Recoveries Are Very Rare

Dr. Steven Novella, a neurologist at Yale University, says he's not surprised by any of this. "Steven Laureys is a legitimate researcher and neurologist," he says. "I think he just wasn't familiar with facilitated communication, and that bit him in the behind."

Novella says Laureys was trying to make an important point: that many patients are misdiagnosed as being vegetative. But he says miraculous recoveries are extremely rare.

"This is the story that always gets told on dramas. That some person is in a coma, and they wake from their coma," Novella says. "But it's a very distorted view of reality, and unfortunately the Rom Houben case played right into that."

Novella says Houben may well be conscious. But there's no evidence he's able to write a book.

Comments

 

Please keep your community civil. All comments must follow the NPR.org Community rules and terms of use, and will be moderated prior to posting. NPR reserves the right to use the comments we receive, in whole or in part, and to use the commenter's name and location, in any medium. See also the Terms of Use, Privacy Policy and Community FAQ.

Support comes from: