Art Caplan “Debunks” 23-year Misdiagnosis of PVS in Belgium, But Omits Some Details

Over the past week, there has been a lot of news coverage regarding the case of Rom Houben, a man in Belgium who was labeled as being in a persistent vegetative state.  He was severely injured in an auto accident in 1983, and since shortly after that has been regarded as being in a persistent vegetative state.

Twenty-three years later, things looked very different.  Houben’s family believed he still had consciousness.  He was fortunate enough to come to the attention of Dr. Steven Laureys, with Belgium’s Coma Science Group.  They tested Houben with new brain scanning equipment and found that his level of brain activity was identical to that of a person who had no brain damage.  Professionals on the team have worked with Houben to develop a way to communicate.

This has become a somewhat sensationalized and “inspirational” story.  And it’s already receiving blowback.

The most prominent of the critics to surface is bioethicist Art Caplan, who says he isn’t buying it.  He has three major concerns that I can identify.  Two of them lose a lot of substance when additional information is taken into account – information that Caplan doesn’t provide.  All three – and my responses – are below:

1. Use of facilitated communication as a way to communicate.
(Full disclosure: As is noted in my bio, I used to work at the Facilitated Communication Institute at Syracuse University.  I have friends and colleagues associated with the technique, including people who at one time used facilitated communication (FC) as a means to communicate, but type independently now.)

From Caplan’s article:

Most troubling about the claim that Houben is communicating are the facts that he is doing so with the help of a therapist who points his finger to the keys on a computer keyboard.

The therapist, Linda Wouters, has told news reporters that she can feel Houben guiding her hand with gentle pressure from his fingers. She feels him objecting when she moves his hand toward an incorrect letter. But, given his injuries, Houben should not be able to generate any pressure in his fingers. And if he can do so, why did no one else detect this ability over the past 23 years?

Houben’s mother, Fina, told the AP her son has been communicating for three years and she believes no one is guiding him.

“At first he had to push with his foot on a sort of computer mouse which only had a yes-no side,” she said in a telephone interview. “Slowly he got better and developed through a language computer and now communicates with this speech therapist holding his hand.”

Laureys’ team showed Houben an object while his aide was taken outside, and when she came back in he was able to write it down correctly, said Prof. Audren Vandaudenhuyse, a colleague of Laureys.

“So all that has been checked and confirmed, so we are sure it is him who is talking,” Vanhaudenhuyse said.

The major cause of this horrible condition is a stroke in a key artery in the brain that causes severe damage to the lower brain and brain stem but not the cortex, where thought and consciousness reside.  It is not clear how a car accident may have caused a locked-in situation.

To add to my skepticism, Houben reportedly has been lying in a bed with relatively little stimulation and communication from others for 23 years. This is worse than being in solitary confinement for a very long time.

 The phrase “has been lying in bed” implies that Houben has been shut off from communication until very recently.

As noted earlier, Laureys and his team have been working with Houben for three years.

I’d love to know more – I’d imagine it was quite possible his thinking and communication was more disjointed three years ago than it is now.  Three years gives you a pretty good amount of time to get your cognitive processes reorganized and used to communicating again.

I agree with Caplan – I have a hard time wrapping my head around the concept of how one could live that way for so long and keep any type of sanity.  I hope I never get a chance to find out.

But I do know of at least one other person who has done that.  She lived that way for six years, only about a quarter of the time that Houben had to endure with his ability to think unrecognized.  That’s exactly the experience reported by Julia Tavalaro, who went on to write a book about the experience titled “Look Up For Yes.”

As for me, I have lots of thoughts and questions.

I’d love to know if they’re trying to develop a more independent communication method for Houben, such as with an eye-pointing system.  I’d love to know, for his own welfare, if they’re using his independent yes/no periodically to ask him to verify the accuracy of his communication through FC.

How many people like Houben are there out there?  Are there better and more reliable ways that we can judge people’s state of consciousness?  Do we have to modify what we think we “know” about the recovery process from brain injuries?

I think there are a lot of questions that this episode provokes.  But you need more information than Caplan provides to get an idea of what kind of questions might be appropriate here.  –Stephen Drake