A Second Birth

This week has seen some interesting news with regard to Rom Houben, a man who appears to have been suffering from Locked In Syndrome for over 20 years. A while ago, he made headlines when it seemed that he had been misdiagnosed as being in a persistent vegetative state, when in fact he had been minimally conscious and “locked in” all these years. While the diagnosis was made in 2006, it is only recently that a paper detailing the case was published, which is, in turn, what has driven media attention to the man.

At first glance, the story seems to be pretty miraculous. A man is left in a permanent vegetative state after an accident, and remains that way for 23 years. He is assessed for signs of brain activity again, by a new doctor (and at the behest of his family) and it is seen that there is brain activity. And now, 3 years later, he is giving interviews on tv, through the medium of Facilitated Communication. He is eloquent, optimistic, and smart. The case must shine out like a beacon to any who have previously questioned the notion of removing life support from people in long term comas or vegetative states, or to people who are perhaps now hoping that their loved one will awaken from their coma and return to the person they once were.

At first glance, I’d be almost inclined to agree, but the scientist in me wanted more than a newspaper article, so I looked a little deeper into it. I found the paper published by (among others) Stephen Laureys, who is the doctor that is being credited with discovering that  Houben was in a minimally conscious state (MCS) rather than a persistant vegetative state (VS). The paper can be viewed freely here and I’ve also grabbed the PDF, lest that link disappear in the future. I also did some investigating into Facilitated Communication, as watching some of the videos featuring Houben (and his facilitator) left me questioning the validity of the method. (One such video is featured here Houben interview)

To my mind, anyone believing that the story will signal a mass re-diagnosis of all comatose patients should read the original paper. It’s linked above, and is freely available (and I applaud the authors for allowing the paper to be open access online, it is a refreshing and welcome change from the norm). At first glance, one of the points made in the conclusion leaps out at me – “Despite the importance of diagnostic accuracy, the rate of misdiagnosis of VS has not substantially changed in the past 15 years.” While misdiagnosis of VS has always occurred, the rate of misdiagnosis has not changed. People are not being diagnosed with VS in order to be shelved, or because doctors don’t have time for them. They are being diagnosed based on a set of criteria that has proven to be reasonably reliable over time. I hope that this article does not bring renewed, dashed hope for many people.

I’ve also looked into facilitated communication, and having done so, I have my doubts about its legitimacy, and it’s efficacy. In some cases, people have moved from facilitated communication to independent communication, but these do seem to be the exception, rather than the rule. The alleged goal of facilitated communication is not to be there to facilitate for the rest of the person’s life, but to allow them to further develop so that they can communicate themselves. Where this has worked has been, for example, cases where the facilitator now need only hold a keyboard while the person uses it, or where the facilitator helped to train the person in the use of a communication device. I don’t see this in the case of Houben.

I understand that learning to use a new communication tool can take some time. I can imagine it would be very difficult. But if Houben’s FC is still communicating for him after 3 years, isn’t there a failure in technique there? After 3 years, shouldn’t he be able to use a device by himself, or at least more independently than to have a facilitator actually moving his finger? Also, as has been pointed out by several articles, it seems remarkable that a man, essentially trapped in solitary confinement for 23 years, should have no psychological problems evident. There appears to be no mental damage, as a result of the accident, or, as a result of the prolonged isolation. It seems to me that someone who has been removed from society, institutionalised, and isolated, for such a long time, really shouldn’t be so well adjusted.

Many detractors of Facilitated Communication say that the words that are spoken are really those of the facilitator, whether it be intentional or unintentional. I would have expected that selecting letters on a full qwerty keyboard, one by one, with only small hand movements to direct you, would be hard, and slow going. In the video above, and many others, the facilitator is moving his hand around with remarkable speed. If he has the muscle tone and strength to move so significantly that he can direct her at that speed, can he not now move toward independent communication?

Or is this all just giving false hope to people? Houben was found to be in a MCS by new technology. This is another matter for dispute, should it interest anyone. However, being in a minimally conscious state is not the same thing as being awake, and nor does it necessarily mean that you will have the physical ability to communicate.

I would hope, for the sake of his family, that Houben really is communicating and feeling alive after his second birth. As with many such things, I find the evidence rather thin, and until such time as I can find something more substantial, I’m forced to conclude that this story is potentially damaging to anyone in the unpleasant position of caring for a comatose loved one. I think it will serve to raise hopes only to dash them sharply again.

And I wish that this had been considered before the media declared him a miracle coma man.

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