Ben Goldacre, Saturday 5 December 2009, The Guardian
Here is a mystery. Rom Houben, a Belgian man, was diagnosed as being in a coma for 23 years, and he has now made a partial recovery. This has been demonstrated with a series of recently developed brain scanning techniques (whose predictive value is not entirely known, but they are promising), and he is also opening his eyes. But the story goes further than that: it is also claimed that he was conscious all along, but simply unable to move, a well-documented phenomena called “locked in syndrome”. This has been reported as a news story around the world, in The Sun, Sky news, CNN, the BBC, the Telegraph (repeatedly), Der Spiegel, Australian TV News, The Guardian (in 4 separate pieces) and hundreds more.
One thing raises alarm bells. Mr Houben has been describing his experience of having locked in syndrome through something called “facilitated communication”: someone holds his finger, can sense where his hand wants to go on a screen, and helps him type, pretty rapidly, if you watch the TV footage.
So it doesn’t seem unreasonable to look at what is known about facilitated communication. Many have compared it to ouija boards, in the sense that facilitators may fully believe they are following an external force, when in reality they are generating purposeful movements themselves. While there’s no space here to describe all the studies ever conducted (and I wouldn’t claim to have read them) I can tell you about some large reviews of the literature which seem competent.
The practise was popular in the 1980s and 1990s, and used mostly in severe autism, so that is where much of the work is found. You might feel this is not entirely applicable to someone with locked in syndrome, but equally you wouldn’t ignore it. A lengthy research review on educational interventions in autism commissioned by the Department for Education and Employment in 1998 found that in FC “almost all scientifically controlled studies showed that the facilitator was the author of the communication” and concluded that it would be hard even to justify further research.
An academic review in 2001 (links online) looked at all the more recent studies, updating two earlier reviews with negative conclusions from 1995, and found that overall, again, the claims made for FC are unsubstantiated.
If you prefer authorities to studies, the National Autistic Society says that five major US professional bodies now formally oppose the use of FC, including the the American Academy of Child & Adolescent Psychiatry, The American Speech-Language-Hearing Association, and the American Association on Mental Retardation. The American Psychological Association issued a position paper on FC in 1994 (the height of its popularity) saying “studies have repeatedly demonstrated that facilitated communication is not a scientifically valid technique” and calling it “a controversial and unproved communicative procedure with no scientifically demonstrated support for its efficacy.”
My concern about this is pretty simple. If you watch the video of Mr Houben’s facilitated communication in action – and I encourage you to do so, at qurl.com/coma – you will see the facilitator looking at the screen and the keyboard, moving Mr Houben’s finger at remarkably high speed to type out a message, while both of Mr Houben’s eyes are closed, with his head slumped sideways across the chair.
Perhaps this was due to bad video editing. It has also been reported that the facilitated communicator was able to correctly identify objects shown only to Mr Houben in private, although that is a less taxing task than the very rapid one-fingered typing shown on TV. But all of these claims can only be assessed in the context of the overwhelmingly negative research on FC.
Journalists and religious commentators are already writing lengthy moral screeds on the implications of this case for our treatment of people in a coma. Mr Houben’s typing may well be genuine, and therefore atypical: nobody can have a meaningful opinion, because newspapers are no place to communicate breakthroughs which are incompatible with large swathes of current knowledge, and based on what seems to be weak and even contradictory evidence.
Now that the amazing case of Mr Houben’s facilitated communication has been made the subject of a huge media sensation around the world, and extensive ethical speculation, I think we can all look forward to seeing it formally assessed and presented in an academic paper by his doctor, Professor Steven Laureys of Belgium’s Coma Science Group. I’ve made a note in my diary for this date next year. Just to check.