Media got it wrong about Belgian coma recovery man


Rom Houben with a therapist trained in facilitated communication. Late last year burst into the news an apparently comatose Belgian man who had languished 23 years in undiagnosed consciousness. But many doctors and bioethicists poured cold water on the good news and questioned key aspects of the story. Who was right? Now that a bit of time has passed Newsweek dug deeper and found that the story had been badly reported and had damaged the reputation of a leading researcher.

There were three major flaws in the narrative as it appeared in the media. First, was journalist' focus on "facilitated communication", a controversial and largely discredited way of communicating with inarticulate patients. The media was fascinated by Mr Houben's comments and plans to write a book. "Ouija board stuff," sniffed Professor Art Caplan, a major voice in American bioethics news. But it was not the researcher, Steven Laureys, head of the Coma Science Group at the University of Liege, Belgium, who had initiated the use of facilitated communication, but Mr Houben's family. He did believe that the technique was working, but his interests lay elsewhere.

That was the second error: his real focus was in diagnosing patients who are believed to be in a permanent vegetative state, but are really conscious to some degree. He says that many exist and is promoting a painstaking checklist, the Coma Recovery Scale, to ensure that diagnoses are accurate. But most journalists missed the significance of this entirely. Finally, it was reported that Mr Houben was found to be conscious after a brain scan. This was not true. The scan was taken after Dr Laureys discovered that Mr Houben was conscious by using the checklist.

The moral of the story is: the truth of major bioethics stories emerges slowly because journalists often misconstrue the facts. So doctors and bioethicists who moonlight as talking heads on the TV news need to be very careful about what they say. What has Dr Lauren learned? He had been naive, he told Newsweek. "Don't I regret, or should I have foreseen, that this would have happened? Well, I didn't," he says. "In retrospect, of course, it's always easy."~ Newsweek, Jan 7

 




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