It was horrible to imagine. A Belgian man, uncommunicative since a car accident left him paralyzed in 1983, suddenly seemed to have a message to convey last November with the help of a speech therapist. He was not unconscious, he indicated. He was trapped.
Now, neurologist Steven Laureys, one of Rom Houben's doctors who diagnosed the patient as conscious based on bedside tests performed four years ago, is telling reporters the speech therapist got it wrong. While recent brain scans of Houben do show brain activity and even consciousness, Houben is not communicating, Laureys says.
"We did not have all the facts before," he told the BBC. "The story of Rom is about the diagnosis of consciousness, not communication."
The technique used with Houben is called facilitated communication, where the subject guides the hand of a speech therapist typing the results. It is a highly controversial technique; in our original coverage on CNET, readers voiced their suspicions via the comment thread and e-mail.
It seems that the family and other doctors, not Laureys himself, brought in a speech therapist, through whom a lengthy message was delivered, including the following:
"I am called Rom. I am not dead. The nurses came, they patted me, they sometimes took my hand, and I heard them say 'no hope.' I meditated, I dreamed my life away--it was all I could do. I don't want to blame anyone--it wouldn't do any good. But I owe my life to my family. Everyone else gave up."
It was exactly, of course, what his family had waited a quarter century to hear. "From the start, I did not prescribe this technique," Laureys said. "But it is important not to make judgments. His family and caregivers acted out of love and compassion."
The German publication Der Spiegel first broke the story of Houben's communications, and it went viral quickly. Houben's speech therapist described what sounds like a Ouija board session, with Houben's hand gently guiding hers. Now, it seems this was merely a case of everyone wanting to believe.
Laureys, who prefers to rely on brain scans, is following up on this story now because he has since performed his own study of three speech therapists working with minimally conscious patients. In two of the three cases, including Houben's, the technique failed. Laureys presented the results at a neuropsychiatry meeting in London in mid-February, announcing the method did not work.
When the story first broke in November, Houben's mother said her son could not only communicate but was trying to write a book. In the wake of Laureys' most recent revelation, he told the Associated Press that he hopes "Rom and his family stay as an example" of how difficult signs of consciousness are to detect and confirm, and adds that "even when we know that patients are conscious, we don't know if there is pain or suffering or what they are feeling."
One recent study shows that 17 percent of patients considered vegetative show normal levels of brain activity. And it is important to note that Laureys is announcing that the facilitated communication technique is unreliable; he stands by his original assessment that Houben is, at least to some degree, conscious.