This week the story of Rom Houben made the news headlines. Rom was in a car accident in 1983 that left him severely brain damaged. He had been diagnosed as being in a ‘permanent vegetative state’ since the time of the accident.

Then, in 2006, neurologist Steven Laureys did a reassessment of Houben’s condition using state of the art brain scanning equipment. His conclusion was that Houben showed signs of being conscious and his inability to communicate meant that he was in a ‘locked in’ state; a condition that normally occurs after a particular type of stroke that damages the lower part of the brain but leaves the cortex intact. This leaves the person fully conscious but due to paralysis, unable to communicate.

We are then informed that after discovering that he was conscious, efforts were made to communicate with Rom. It was found that he can communicate via the use of a special keyboard whereby a facilitator helps guide his hand over the keyboard and depending on how much resistance he offers, helps him find the right keys to type out words.

The media initially reported this story as factual (See: http://news.bbc.co.uk/1/hi/world/europe/8375326.stm as an example) but a lot of doubt has emerged over the validity of the claims since.

Whilst it is always unwise to draw conclusions on complex issues from media reporting, we can have a look at the claims and see whether we can at least gain some insight as to what is going on here.

There are actually two main claims here:

1. That Houben is consciously aware; and
2. That he is communicating.

Is Houben consciously aware?

Some questioning of Dr. Laureys’ credibility has arisen. Is he someone who’s a bona fide specialist in this area or is he crossing the line into pseudoscience, for example. Whilst other neurologists who are specialists in the field would be the best people to answer that question, Dr. Laureys is indeed a published author in several science journals regarding coma, neuroimaging, and consciousness. His Wikipedia entry shows an impressive CV (see: http://en.wikipedia.org/wiki/Steven_Laureys). So there’s no evidence to suggest that Laureys is anything other than a genuine scientist and a specialist in this field.

Consciousness is difficult to assess even using neuroimaging techniques. Laureys, two years before reassessing Houben, concluded in his paper Functional neuroimaging in the vegetative state¹ that:

In our opinion, the use of PET on growing scale and the future use of functional MRI will substantially increase our understanding of severely brain-injured patients. However, in the absence of a generally accepted neural correlate of human consciousness, it remains very difficult to interpret functional neuroimaging data from severely brain injured patients as a proof or disproof of their ‘unconsciousness’.

So although Laureys is an expert in the field, it is difficult to know just how accurate the claim that Houben is consciously aware can be. Consciousness is a continuum from awareness to complete unawareness. Houben may show signs of consciousness yet not be aware at all. Having read Laureys’ own writing on this subject, it’s actually not at all easy to know whether someone is consciously aware from neuroimaging data. The claim for the level of consciousness and awareness from the neurological evidence is not at all clear here.

All we can know is that it is possible that Houben is both conscious and aware.

Is Houben communicating?

This is the claim that has received the most scrutiny on the internet. We’ve been shown Houben apparently communicating by typing on a keyboard, although there is a person helping him.

This looks exactly like a technique called Facilitated Communication (FC) that has been around for 30 years or so. The problem is, it’s a very controversial technique with many problems surrounding its usage and very little evidence to support it.

FC has been used with people who are non-communicative; notably people with autism. The basic idea is that some non-communicative people have a full language capability but it’s their inability to communicate that language (for example due to lack of motor skills) that is their problem. So what FC aims to achieve is to offer an alternative method by which non-communicative people can communicate. This is achieved through a person assisting them who’s known as a facilitator.

The non-communicative person normally communicates via a computer keyboard and the key presses are helped (facilitated) by the facilitator who holds the person’s arm and/or hand over the keys. The facilitator detects the slight pressure exerted by the person aiming for certain keys and helps them find them thus typing out words.

However, this technique has been criticised as being illusory: it works via the ideomotor effect whereby the facilitator, unintentionally and unconsciously, guides the hand of the person to the keys and it’s their words that are being produced and not the person’s they are facilitating. (see: The Ideomotor Effect)

In the examples we’ve seen in this case on the news, it is quite clear by the speed at which Houben types, and that he does so even when he’s not looking at the keyboard, that this is what we’re seeing here. In some clips it's quite obvious that the facilitator is doing the typing.

Many scientific studies have been done on FC with protocols normally involving some information being imparted to the non-communicative person in the absence of the facilitator and then the facilitator works as normal with the person to see whether the information can be extracted via FC. The results are almost universally negative and the few positive ones seem to be as a result of lax or insufficient control procedures.

In a review of the FC experiments since previous negative reviews in 1995, it was found that later studies also confirmed the earlier studies' findings that FC does not work (Mostert, 2001)²:

The results of the review support and confirm the conclusions reached by previous reviewers of the empirical FC literature. The divide between the results of studies incorporating control procedures find very little to no support for the efficacy of FC, studies employing fewer control procedures produce mixed results, and studies ignoring control procedures almost universally find FC to be effective.

These findings support the idea that FC will appear to work when there are no control conditions imposed (as is the case in normal usage) but the fact that it stops working when controls are put in place shows that FC does not actually work. This is entirely in line with what’s found with other techniques that rely on ideomotor action (dowsing, for example).

So in answer to the two main claims made here we can reasonably conclude that:

1. It is possible that Houben is conscious and that he has awareness although it’s not confirmed; and
2. That no matter what Houben’s status of consciousness is, it is extremely unlikely that he is genuinely communicating to the outside world.

The implication of this is that if Houben is consciously aware and is in a ‘locked-in’ state then not only has he been unable to communicate for possibly many years, but that now he has someone communicating on his behalf, the words are not his own. It is rather disturbing, to say the least, that Houben may be fully aware of what’s going on but by a cruel irony, is unable to communicate this because of the use of Facilitated Communication on his behalf.

What is important now is that Houben’s case is independently reassessed to try to ascertain his level of consciousness and awareness as this has implications for his treatment and quality of life; but importantly, that the use of Facilitated Communication be recognized for the illusory communicative therapy that it so clearly is and an end put to its usage so that more appropriate forms of communication procedure can be attempted to give Houben a genuine chance of communicating should he actually be conscious and capable of doing so.

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References:

(1) Functional neuroimaging in the vegetative state.
     Laureys, Steven; NeuroRehabilitation, Vol 19(4), 2004. pp. 335-341.

(2) Facilitated communication since 1995: A review of published studies.
     Mostert, Mark P.; Journal of Autism and Developmental Disorders, Vol 31(3), Jun, 2001. pp. 287-313.

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Update: 21^st Feb 2010

Further testing of the communication method used with Rom Houben has taken place. It has been found that Houben is not communicating after all and that the messages that were apparently coming from Houben were in fact being produced by the therapist using the technique. It should be noted that the therapist will not have purposely been deceiving anyone however; the ideomotor effect that Facilitated Communication relies upon fools the facilitator as much as anyone else.

However, this finding does highlight the need for constant vigilance regarding the methods employed in treating or working with people in extremely vulnerable positions; and that, above all, evidence should be taken into account. Sadly, there is a huge amount of evidence regarding FC and it is quite clear that it doesn't actually work yet it is still used in many instances on the basis that it appears to work.

http://news.bbc.co.uk/1/hi/world/europe/8526017.stm

http://skepp.be/nieuws/facilitated-communication-coma-patient-fabricated