April 17, 2024

Media got it wrong about Belgian coma recovery man

Newsweek special investigation

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.

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


Michael Cook