Belgian coma recovery patient writes his way into a scientific controversy

Coma recovery case attracts doubters

BRUSSELS — Rom Houben’s mother remembers her son’s amazement when he finally started communicating again after spending 23 years locked in a paralyzed body that was misdiagnosed as vegetative.

“Early on, he was surprised that the words came out of his finger,” Fina Nicolaes said. “Now, he is busy writing a book.”

However, his communication, with the help of a speech therapist holding his hand punching a touch screen, is stirring controversy only days after the story of his comeback as a fully conscious man entombed in an immobile body captured the world’s imagination.

It has scholars questioning the technique of facilitated communication, bloggers denouncing it as a cruel farce, and millions asking as they watch the video of Houben’s hand being held as it quickly types into the screen — who is really doing the punching here?

Dr. Steven Laureys understands the questions and said he might ask the same if he did not know the patient. And he said there is only one way to address the doubters — science.

“For me, there are two questions: Is he conscious? Can he communicate? That is ‘yes’ twice,” he said in a telephone interview with The Associated Press.

Doctors point out that it has been three years since Houben was discovered to be conscious and he has had much time to improve his communication skills. In the early stages they were basic and through practice he has been able to communicate as fluidly as he does now, they say.

One of the checks Laureys applied to verify Houben was really communicating was to send the speech therapist away before showing his patient different objects. When the aide came back and Houben was asked to say what he saw, that same hand held by the aide punched in the right information, he said.

He said there are many more tests he and his team conducted that he won’t divulge because they are covered by medical secrecy and patients rights. “How would you like me discussing your IQ on the Internet?” he asked.

Laureys of the University of Liege has plenty of credentials.

He has published papers on patients in comatose or vegetative states, including one in the prestigious medical journal, The Lancet Neurology, with colleagues from Cornell University and Cambridge University. Dr. James Bernat of Dartmouth Medical School calls him “one of the world’s leaders” in the field of brain imaging in people with consciousness disorders.

Still, when news of Houben’s recovery and the video hit the world this week, some people immediately began raising doubts.

Bioethics professor Arthur Caplan of the University of Pennsylvania was among the first — calling the practice of facilitated communication “Ouija board stuff.”

“When people look at it, it’s usually the person doing the pointing who’s doing the messages, not the person they claim they are helping.”

The British Psychological Society, through clinical neurologist Dr. Graham Powell echoed that view, arguing there is nothing in scientific literature to support using facilitated communication as it’s been used with Houben.

“The person (doing the facilitated communication) says they’re being guided by the patient, but we really don’t know if that’s the case,” Powell said.

Powell said a much more simple yes-no button device would reduce the potential of error: “He may not use it perfectly and his movement control may not be great, but with a system like this, there is no danger of a third party introducing mistakes.”

The ‘t Weyerke care institute in eastern Belgium where Houben is residing knows the practice “is open to controversy. We realize that,” said spokesman Lode Vanbriel.

He said Houben started out with a yes-no system before moving to the touch screen, and returning to it would be extremely limiting. He added it would be strange for Houben’s mother not to have noticed anything wrong over the three years he has been communicating again.

Nicolaes said she is convinced her son speaks to her and appreciates the jokes and “black humor” that lace his sentences.

Laureys’s team is in the process of producing a scientific study validating the controversial practice. He refused to discuss it in the media, saying he will follow the classical route of scientific peer reviews and publication in specialized journals before making it public to the world at large.

He hopes it will be ready “in the not too distant future.”

The next challenge for Houben is to continue improving his movement by tiny steps so that one day, he might even write without an aide, said Laureys.

“We talk about small movements, a tiny control of the finger. But it can mean a lot for him. He might control his wheelchair or his computer,” he said.

AP Medical Writers Malcolm Ritter in New York and Maria Cheng in London contributed to this article.