Belgian coma confusion

By now most readers will have heard about the case of the Belgian man, Rom Houben, apparently misdiagnosed as in a persistent vegetative state for 23 years. Rather than being unconscious, as persistent vegetative state patients are thought to be, he was apparently in the ‘locked-in state’. The locked-in state is not a disorder of consciousness at all; instead it is a state of paralysis. Because the patient is unable to give the behavioral manifestations of consciousness, they are often misdiagnosed. Genuine disorders of consciousness are notoriously hard to tell apart; the possibility of locked-in syndrome makes the diagnostic task even more difficult.

The press is reporting this as a good news story, and in some ways of course it is. There can be no doubt that it is far better to be in the locked-in state and have it recognized – and therefore one’s boredom alleviated and one’s humanity recognized – then to be in the locked-in state and treated as though one were unconscious. But how bad is it to be in the locked in state? Steven Laureys, whose team corrected Houben’s misdiagnosis, has argued that life in the locked-in state is worthwhile. He bases this claim on his studies measuring subjective well-being in patients and normal controls: people in the locked-in state rate their life at present as no worse than controls. But how reliable are such studies? Dan Haybron has suggested that people’s responses may reflect an ethical stance they take to their lives as much as a reading of their state of happiness. Some evidence for this claim comes from studies of patients receiving kidney dialysis. Such patients also report mean levels of subjective well-being that do not differ from controls, but other studies have found that these patients would give up almost half of their remaining years of life in order to live without the need for constant dialysis. The apparent conflict between these findings is evidence that we ought not to put too much weight on reports of subjective well-being.

There is one other aspect of the story I want to touch on. I have been unable to find a scientific paper reporting the case. Instead, like everyone else, I am forced to rely on press reports. But the press reports are confusing. Some people have suggested – based on the evidence of this video – that the diagnosis of locked-in state was made on the basis of facilitated communication. Facilitated communication is a discredited means of attempting communication with the profoundly disabled – discredited because the communications were found to come from the facilitators (fueled by wishful thinking) and not the disabled person. Arthur Caplan, for instance, doubts that the patient is conscious, based on the video, and on the fact that Houben’s statements were too clear for someone who has been unable to communicate for decades (apparently Caplan is unaware that diagnosis was corrected three years ago). But I doubt Laureys has made an error like this. The correction appears to have been made on the basis of PET scan, and verified behaviorally (it seems that therapy enabled Houben to answer yes/no questions by moving his foot, without the aid of a facilitator). But because the reports are confused and contradictory, the case has done little for the public understanding of science. Perhaps the blame should be laid at the door of the journalists, and not the scientists; still, the case highlights the need for scientists to ensure clearer communication. They may not be able to control what the press reports, but they can provide accurate information on their websites, to put doubts like those Caplan expresses to rest.