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Coma Confusion Resolved

Back in November, I blogged about the case of Rom Houben, a man who after more than two decades in what was apparently a persistent vegetative state was found to be conscious. Following the newspaper reports of the time – as I noted at the time, I had nothing to go on except newspaper reports – I described it as a case in which the locked-in state was misdiagnosed as vegetative state. These mistakes do, tragically, occur. But we now know that Rom Houben is not in the locked-in state at all. The diagnosis of locked-in state was made on the basis of the use of facilitated communication, a technique in which someone is supposedly helped to communicate. Usually the facilitator guides the hand of the person they aim to help; the idea being that they can compensate for the muscular weakness by sensitively interpreting the person’s movements. Facilitated communication became notorious in the 1990s, when it was found that in most cases in which it was used (mainly to communicate with severely autistic individuals) the facilitators were producing the message. The test is simple: put headphones in both the facilitator and the person they are trying to help, and ask them questions simultaneously. Sometimes both receive the same questions, sometimes they receive different questions. The finding is that answers are always to the questions asked of the facilitator (obviously the fact that the facilitators have gladly participated in this research is good evidence of their sincerity. How we can mistake our own movements for someone else’s is a fascinating question, explored interestingly by Daniel Wegner in The Illusion of Conscious Will).

We now know that Mr Houben’s facilitator was the source of the complex communications, not Mr Houben. This finding is now being used to cast doubt on whether Houben is conscious at all. The Seattle-Times reports that “[e]xperts say the larger question of whether people like Houben who have a traumatic brain injury are conscious and alert remains unanswered”, which sounds very sensible and noncommittal, but also happens to be false. I don’t think any expert doubts that many people with traumatic brain injuries recover consciousness. Locked-in syndrome is genuine; moreover, recent discoveries by neuroscientists – including Steven Laureys, the neuroscientist who diagnosed Houben as conscious – have shown that some patients who are diagnosed as vegetative on the basis of behavioral  evidence are actually minimally conscious. Laureys demonstrated that Houben, too, was minimally conscious. But minimally conscious is a long way from alert and genuinely responsive (though it can be a transition stage on the way to a fuller recovery).  

Something went very wrong, somewhere in the transmission of the story. Somewhere along the line between the correction of the misdiagnosis of Mr Houben, made on the basis of a new coma recovery scale and a PET scan, and the reporting, a story about misdiagnosis became a story about communication. The story accreted details as it was passed from source to source. What seems to have happened is that the story became mixed up with the wishful thinking of Houben’s family. Unfortunately, having become intertwined the failure to verify one part of the story is now being taken to cast doubt on the other. This is especially unfortunate, because the press is partly responsible for the combining of the two separate stories in the first place (only partly, because Steven Laureys himself seems to have been overly credulous too, and therefore did not make the efforts he should have to prompt reporters to keep the stories apart). There is a salutary lesson here for everyone involved, but little sign that it is being learned.  

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