How the Media Distorted the Case of a Coma Patient

Late last year, the world was captivated by the story of Rom Houben, a Belgian man who suffered a traumatic brain injury and was misdiagnosed for 23 years as being in a vegetative state. In fact, media outlets reported breathlessly, Houben had been conscious the whole time, trapped inside his motionless body, until a heroic doctor used cutting-edge scans to find normal brain activity. What's more, that doctor discovered a way for Houben to communicate, allowing the "locked-in" man to tell his harrowing tale to visiting reporters (Houben reportedly has a book on the way).

It was a fantastic story that ruled the headlines for a few days, but unfortunately, it was only partly true, and the resulting media circus distorted the work of Houben's doctor, Steven Laureys. In reality, Laureys didn't need advanced technology to diagnose Houben, who doesn't meet the definition of a locked-in patient. Laureys actually can't verify that the patient was fully conscious for all those 23 years. Nor did Laureys acquaint Houben with "facilitated communication," a controversial aided-speech method that has Houben reliant on the hand of a therapist to peck out letters on a keyboard. (This method has been debunked time and again, including in a famous series of child-abuse trials involving severely autistic children.) But as the story gained more and more media attention, the narrative changed, and Laureys's work was increasingly misinterpreted. The doctor now sees his name linked to facilitated communication and seems driven to defend the method, even though the case is more accurately seen as a vindication for a simple but elegant observational test that can be used to determine a patient's level of consciousness.

Laureys, who directs the Coma Science Group at the University of Liege, Belgium, is well regarded for his research on consciousness in brain-injury patients, especially for devising new ways to distinguish patients in a vegetative state from a minimally conscious one (the latter sees waxing and waning of awareness). It's an important distinction: minimally conscious patients have a better chance of recovery than vegetative ones. Laureys's research may give doctors better tools to diagnose these patients. His work using fMRIs and digitally processed EEGs to determine brain activity is world-reknown. This summer, his team published work illustrating how a paper-and-pencil observational test, the Coma Recovery Scale (CRS), first developed by neuropsychologist Joseph Giacino in 1991, is far superior to a subjective analysis—in other words, the collective opinion of entire teams of physicians and therapists, many of whom still misdiagnosed patients after weeks of treatment.

According to Laureys's research, the CRS, a standardized exam where responses to sensory stimuli are repeatedly tabulated, provides a more detailed picture than a routine bedside neurological examination, which might only involve a few minutes of reflex testing of unresponsive patients. It allows doctors to pick up on a variety of low-level patient behaviors that might not otherwise be noticed. In the published study, his team used the CRS to find that 18 of 44 of "vegetative" patients had been misdiagnosed.

After the study was published, Laureys got a call from Manfred Dworschak, a reporter interested in profiling the doctor and his work. He asked Laureys to help provide a human dimension for the article—a misdiagnosed patient who was willing to go public. Laureys recommended Rom Houben, a car-accident victim whose mother had pressed him for a consultation in 2006, convinced that her son had been misdiagnosed for two decades. Though Houben had not been one of the patients evaluated in the study, the technique was the same: Laureys used the CRS to determine that Houben was, in fact, conscious. Laureys thought Houben would also make a good source in part because he appeared to be able to describe the horror of his misdiagnosis, thanks to the facilitated-communication therapist hired by his family soon after Laureys's initial evaluation.

Laureys had first heard about facilitated communication from French doctors years before he met Houben and assumed it had some legitimacy. When Houben and his family showed up at a 2006 appointment with the unexpected therapist in tow, Laureys performed an unscientific test of his own: with the therapist out of the room, Laureys showed Houben objects. When the therapist came back in to facilitate, Houben was able to name the objects. Laureys was impressed, though his focus remained on the effectiveness of the CRS test.

The German magazine Der Spiegelpublished the piece about Houben and Laureys online on Nov. 23, which Laureys hoped would call attention to the effectiveness of the underused CRS. (The English translation appeared online two days later.) But when U.S. outlets reported on Houben, key facts were bungled. For instance, The Associated Press mistakenly claimed that Laureys taught Houben how to communicate and later noted that Laureys used sophisticated brain-activity scans to diagnose Houben (he hadn't—though experimental scans were later made, the CRS was all it took for an accurate diagnosis). None of its coverage mentioned the Coma Recovery Scale. Even worse, the presence of the much-debated facilitated-communication technique took the story in a different direction.

Art Caplan, a University of Pennsylvania bioethicist, knows stories like these can make families afraid to withdraw care and donate organs even when doctors reliably predict a poor outcome for a patient. The moment he saw tape of Houben's aide moving his fingers across a computer keyboard, he sensed trouble, Caplan says. "That's Ouija board stuff," he told the AP. There was a brief moment when the story first broke stateside during which CRS was discussed—Joe Giacino, the American neuropsychologist who developed the test, appeared on Campbell Brown's show on CNN and explained the benefits of the scale, which many centers still don't use. But only 48 hours later, Giacino was back on CNN arguing that the questions about facilitated communication that had become the media's focus were legitimate.

Unfortunately, the furor over this odd "therapy" has further confused what the public understands about coma recovery. In fact, facilitated communication is so rare that it's a nonissue for most brain-injury patients. Neither Laureys nor Giacino has ever seen another brain-injured patient use it. Nonetheless, Laureys is planning a thorough investigation and asks the public and the scientific community "to be patient" until he can get "facilitated communication through [a] peer-reviewed journal."

As Laureys heads back into his lab, leaving behind a mess he wants to clear up one day with published science, he admits to some naiveté and says he feels a little "paranoid." "Don't I regret, or should I have foreseen, that this would have happened? Well, I didn't," Laureys says with a sigh. "In retrospect, of course, it's always easy."