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Man in Coma 23 Years – Is He Really Conscious?

I don’t know. The mainstream media is doing a wonderful job sensationalizing this case, presenting it without skepticism. Some outlets are doing a good job of discussing the relevant issues – but they don’t have the information to have a meaningful discussion of this particular case. Details are tantalizing but thin.

The case is that of Rom Houben. The story was broke, as far as I can tell, by the Mail Online – yes, that is a huge red flag. It does not make the story wrong, it just doesn’t instill in me confidence in the reporting.

Mr. Houben was in a terrible motor vehicle accident 23 years ago and has been paralyzed ever since. His diagnosis has been PVS – persistent vegetative state. However, recently, we are told, his mother insisted on a neurological re-evaluation. This is actually quite reasonable, generally speaking (again, without knowing specific details of this case).

As a result Dr. Steven Laureys did some advanced neuro-imaging on Mr. Houben. Laureys is a neurologist with not only legitimate but impressive expertise in coma and disorders of consciousness. Often the press throws around the term “top expert” without any meaning, but in this case the term seems appropriate.

I do not know what imaging was done, but Dr. Laureys’ team is doing research using functional MRI scanning and MRI spectroscopy – techniques which infer brain function from blood flow or metabolism. They are using these scanning techniques, during resting and activated states, to see how much cortical brain function there is in patients in apparent coma.

According to the press reports, Dr. Laureys found that Houben’s brain function was intact, or almost intact. This led to further evaluation of Mr. Houben’s clinical state, and it was discovered that he was able to communicate by typing out messaging on a board. Mr. Houben soon began recounting how he was awake the whole time, screaming inside his head, and eventually retreated into his dreams. He now feels like he has been reborn and looks forward to interacting with his family.

This is a wonderful story for the media. But to this neurologist, and I would think to any critically-thinking journalist, some questions come to mind. The biggest problem with this case as presented is that the finger-typing of Mr. Houben looks suspiciously like facilitated communication.

But first, a little background.

Coma, PVS, Minimally Conscious State, and Locked In Syndrome.

I have written previously about the various types of coma or disorders of consciousness. There are three states that are worth defining to understand this and similar cases. The first is persistent vegetative state (PVS) in which there is insufficient brain activity to general consious awareness. People in a PVS may display signs of wakefullness, like moving their eye and opening their mouths, but do not interact with their environment.

It is important to note that many people in PVS have documented brain damage of such an extent that there really is no question about the diagnosis, or their prognosis.

But, of course, there is also a gray zone, or transition from PVS to minimally conscious state (MCS). In an MCS a person cannot communicate but they do display signs that they can respond to their environment. Prognosis is very poor, like in PVS, but one notch above hopeless, with rare cases of meaningful recovery.

I must point out at this point also that I am talking about chronic states – not people who are days or weeks after an injury or event. People can recover after a significant injury, but they typically show potential for recovery early on. After months or years in a coma, the prognosis is grim.

In terms of diagnosis, it can be challenging to distinguish between PVS and MCS – it’s the different between no signs of consciousness and minimal signs of consciousness. Of course, there may be very subtle signs that are missed. And as our technology improves, we are sure to have greater sensitivity and pick up more cases of MCS misdiagnosed as PVS.

It remains to be seen, however, if the subtle distinction is clinically meaningful.

To add to the complexity, however, there is a condition call locked in syndrome. In this (thankfully rare) syndrome patients are conscious but paralyzed. For example, a brainstem stroke might cause a person to be paralyzed below the eyes – all they can do is blink and move their eyes. But they are fully conscious if the thinking part of the brain is intact.

Facilitated Communication

Facilitated communication, or FC, has nothing to do with coma but is relevant to this case because of some of the media reports. FC is the technique of holding a patient’s hand to “help” them communicate by pointing to letters on a board.

When FC was first proposed to the therapy community, it seemed like a powerful new technique – countless children who were thought to be too brain damaged to communicate were believed, due to FC, to actually have almost intact intellects trapped inside a non-communicating body.

Unfortunately, FC was promoted prior to proper scientific validation. When it was studied in properlyh controlled blinded trials it turned out the the facilitator, and not the client, was doing all the communicating. FC is nothing but a well-meaning delusion. But it is also a dangerous one – FC testimony has led to the false conviction of adults accused of abuse.

While we do not want to miss any cases of a person’s hidden ability to communicate, the FC experience teaches us to be cautious. We must always ask – is communication (or any sign of consciousness) real? Has it been validated in an objective and controlled way?

The Houben Case

I am always a bit uneasy analyzing these media cases, because I often do not have direct access to the patient or the medical records. So I have to add the standard disclaimer – my analysis is based upon the information that has been made public, not a thorough medical evaluation of the patient. I can often only analyze the pieces of evidence I am given, and speculate as to probabilities.

In this case there are several interesting aspects that do not all fit together. The first question is whether or not it is plausible that a patient would be diagnosed as being PVS when in fact they were locked in (that is the claim in this case). That would be unusual, but not impossible.

Typically when patients are locked in there is identifiable damage that can produce widespread paralysis, but the cortex should be relatively spared. In addition, there are typically some residual functions remaining, like eye movements. But it is possible for even that to be lacking.

More likely is the possibility that Mr. Houben was initially comatose but then over the years his brain function improved until he was able to be conscious. But by that time he was paralyzed and debilitated, and so not able to move to demonstrate his consciousness – locked in. Also by that time he would likely be in a chronic care facility and may not have had close neurological exams.

So while this would be an usual case, I can buy it. Further, this is consistent with the finding of preserved cortical activity on functional scanning.

The implications of this case, and similar cases, is that we need to use careful and standardized neurological exams to assess comatose patients, and they should be periodically reevaluated. But at the same time – not all cases have the potential to improve. Some patients are injured beyond the plausibility of making meaningful recover, and families should be given a realistic assessment of their loved-one’s condition. Also  – cases like this are the rare exception, not the rule.

Now comes the tricky part – the clinical correlation. Looking at brain anatomy and activity is important, but must be placed into a proper clinical context. At present, the clinical exam is still critical.

I don’t know what Mr. Houben’s exam is. But I do have a video of him communicating. What I can say with high confidence is that this is a video of bogus facilitated communication. The “facilitator” appears to not just be supporting Houben’s hand, but moving it around the keyboard.

Houben is looking in the general direction of the keyboard, but at times not directly at it (which is necessary for single finger typing). It is not clear if he can even see, and since his eyes are not in line it is not clear which eye he would be using.

His hand is also in a brace; his finger is not touching the board – the plastic of the brace is – so he would have little sensory feedback.

And yet his hand flies dextrously across the board typing very quickly. It seems impossible that someone with his level of paralysis, and years of inactivity, would be able to type so quickly with just a little “support”. There is little doubt, in other words, that his typing is the product of bogus FC – the facilitator is doing the communicating, not Houben.

Reporting of his typing is without skepticism, and so basic questions are not addressed. It would also be almost trivial to test whether or not the communication were legitimate – the report says he responds in Flemish – so have a non-Flemish speaking facilitator hold his hand. Apparently, he also understands English so you could have a non-English speaking facilitator answer questions posed in English. Or blind the facilitator to the keyboard or visual information that Houben has access to.

What would not be sufficient, however, is a knowledge test – asking Houben about events in the past or about his life, for example. This is too difficult to tightly control – a facilitator may have been contaminated, or may just make obvious or lucky guesses.

In an interview for NPR, Laureys reports that the family came up with the method of communication, and it was validated by having Houben identify objects that were show to him – that’s it. Laureys also reports that the medical doctors were skeptical of this communication, and it seems right that they were.

Until a tightly controlled test is done, the FC evidence is worthless.

But I do not know if this is the only clinical evidence of consciousness in Houben. Perhaps he can do what other locked in patients can do – tap once for “yes” and twice for” no,” for example. Maybe the FC is a later addition – a misguided attempt to communicate with Houben, who really is locked in. (In which case I wonder what he thinks about his facilitator – perhaps he is still screaming in his head, “get rid of this nut and let’s go back to the finger tapping.”)

The only thing I am certain about in this case is that the typing out of messages through FC is bogus. Otherwise, I do not have access to sufficiently detailed information to make any specific conclusions.

Hopefully, more information will come to light as further journalists are attracted to this case. Also, I have e-mailed Dr. Laureys hoping to get some more information directly from him. He responded with a link to his paper on this topic, but there is no identifiable information in the paper about Houben. He simply says that Houben illustrates the problem discussed in his paper – the misdiagnosis of MCS as PVS. He did not comment on the FC used in this case. If I get any further information I will write a follow up.

Meanwhile, this case stands as a cautionary tale – mostly about the dangers of the media discussing the implications of a story before the facts have been verified. It may also be a rare case of misdiagnosed locked in syndrome. My best guess is that Dr. Laureys is correct about the preserved cortical activity, but he is simply not familiar with the phenomenon of FC (he did not sound familiar on the interview) and has been deceived by it.  If this is so, then the FC is an unfortunate distraction from this case (and getting disproportionate attention from the media). I am already reading science bloggers comment on the fact that the video of Houben typing calls the whole case into question.

It is also, in my opinion, a further abuse of this patient. Mr. Houben, if he is truly conscious, has now been deprived once again of his ability to communicate – usurped by a facilitator, who will be communicating in his name (and even writing a book, we are told). Never underestimate the ability for pseudoscience to make a bad situation worse.

Addendum: Here is a new video in which Houben clearly has his eyes closed while the “facilitator” is typing furiously. This is completely impossible. (Hat tip to Orac for the link – he has also discussed the case.)

Posted in: Neuroscience/Mental Health, Science and the Media

Leave a Comment (19) ↓

19 thoughts on “Man in Coma 23 Years – Is He Really Conscious?

  1. David Gorski says:

    As I’ve said elsewhere, for purposes of determining if the FC on display is bogus (which it almost certainly is), it’s really irrelevant whether Houben is actually in a vegetative state or in a locked-in state. That’s why I don’t make any speculation one way or the other whether Houben is conscious or not. There’s just not enough information to tell.

    There is, however, more than enough information in those videos to conclude that the FC shown in them is clearly the result of the facilitator communicating, not Houben. In fact, I agree that it’s even worse if Houben really is locked-in, because as long as the FC distraction goes on he will never be able to find a way to communicate with the outside world.

    I also note that James Randi has commented.

  2. Scott says:

    Encouragingly, there are plenty of comments on the CNN story about how the FC is clearly bogus.

  3. More evidence that crowd sourcing can be better than what passes for journalism these days.

  4. windriven says:

    A Belgian man in a persistent vegetative state for twenty years following a tragic traffic accident has found new purpose in life as a marionette. He and his puppeteer are booking engagements across Europe culminating in a gala performance at Royal Albert Hall on December 31.

    This is as pathetic as the Terry Schiavo thing. Good thing he isn’t in an American hospital or we’d have nuts marching outside the hospital carrying ‘Free Rom Houbens’ placards.

  5. BelgianAtheist says:

    Catholic “news” sources have jumped on this case to use it against euthanasia.
    Thanks for this post!

  6. BKsea says:

    Thanks for the post. I was eagerly waiting all day yesterday for SBM’s take on this. One point for Dr. Laureys is what this will do to his reputation. Perusing his work on Pubmed, it was apparent that he is prolific in this field. But, based on this story, I was trying to reveal him in my mind as a crank. If I was in that field, I would always take his future work with a grain of salt. I think he needs to distance himself from this story unless the communication can truly be verified.

  7. Basiorana says:

    BKsea, do we know that Dr. Laurey suggested, promoted, or agreed with the idea of the facilitated communication?

    I think, besides the they should repeat the scans with an independent investigator, and attempt to confirm Mr. Houben is actually conscious. Only at that point should they go ahead. One test saying he is actually locked in does not mean he is.

    The really scary part is that people genuinely believe this is an argument against euthanasia! I think every person who believes it’s better to be locked in your body for 23 years than to pull the plug ought to read Johnny Got His Gun. My reaction was to turn to my fiance and make him SWEAR he would pull the plug on me if I was ever in such a condition (since meaningful recovery is still unlikely– the best case recorded of recovery from locked-in syndrome involved a woman who could move her head and press her cheek to a pad to control a chair, and had a device like Hawking’s). I would say at most this is evidence that we all need clearly defined living wills.

  8. EricG says:

    2nd on two points:

    1. many of the commenters smell the sham, when they are not busy talking about…

    2. how liberal health care reform would kill this “miracle recovery”

    the 2nd video from the addendum (played without sound) looks unequivocally like a woman using a paralyzed man’s hand to type.

    was his reaction to someone being close (near the beginning he appears to flinch and wave his arm) indicative of anything important?

  9. Calli Arcale says:

    Hmm, so they’re basing the conclusion that he’s minimally conscious (which, BTW, wouldn’t seem to jive with the complex sentences he’s supposedly been producing) on fMRI. I should ask my brother for his opinion on that. He’s coming over for the holidays, and he is a physicist specializing in fMRI. (Yes, I said “physicist”, not “physician”. He works with neurologists, trying to come up with ways of improving the technology.) He’s said on many occasions that it’s quite possible to see things that aren’t there on fMRI, and not all neurologists keep its limitations in mind.

    There was a group of neurologists who attempted to illustrate this problem by subjecting a dead salmon to fMRI scans. They were able to demonstrate that the salmon had opinions about pictures of humans in violent emotional settings. It was done partly as a joke but mostly as an illustration of the fact that you need to be careful how you interpret the data. Just because something changed between two data points doesn’t mean the change was meaningful — or even real.

    Neural correlates of interspecies perspective taking in the post-mortem Atlantic Salmon: An argument for multiple comparisons correction

  10. daedalus2u says:

    EricG, Huh?

    ” liberal health care reform would kill this “miracle recovery””

    How do you figure that? This happened in Belgium, a place that already has universal public health care.

    ”Mr Houben, who now lives in a specialist care home for the severely disabled in Zolder, Belgium”.

    http://en.wikipedia.org/wiki/Universal_health_care

  11. EricG says:

    daedalus2u

    eager to whip out some sources and quotes huh? lol, just kidding, i know what you mean.

    it was intended to brief for:

    “there are many people talking about how bunk this is, but only when they take a breath and stop talking about how liberal health care reform is going to prevent a man like this from a chance at life because of death panels and cold hard decision making based on saving money instead of gods grace towards the sanctity of human life and…” on and on…come to think of it, i should repost your comment as a rebuttal, but i digress.

    anyone have a note or two about the significance of his arm flail at the beginning of the second video Dr. Novella posted? Perhaps I am confused as to the confines of MCS, PVS, locked in, paralysis etc.

  12. JustAsItSounds says:

    EricG, I read somewhere yesterday that it looks like Rom’s flinch at the beginning of that video is an automatic reflex reaction to the woman blowing into his eye. Apprently it’s a common reaction in coma patients and is not indicative of higher brain function at all.

    As an aside, the most famous case of locked in syndrome to me is that of French journalist Jean-Dominique Bauby who went on to write a book ‘The diving bell and the butterfly’ (Le scaphandre et le papillon) that was made into a film in 2007 – which I highly recommend.

  13. sanjiva86 says:

    Dr. Novella,

    Thank you for yet another interesting and insightful article. I was wondering if you could provide some commentary on yet another story in the headlines (at least in Canada). This one has to do with Dr. Paolo Zamboni and his theory of “chronic cerebrospinal venous insufficiency” as the cause of multiple sclerosis. He’s developed a surgical technique which he claims has led to dramatic results in several patients, including his own wife. I think I paper is upcoming or has already been published in the Journal of Vascular Surgery. This was featured in a short documentary by Canadian reporters, and it’s been all over the news for the last couple of days. MS patients are really excited by this, and many seem to want to undergo this surgery even before it can be confirmed by more trials.

  14. EricG says:

    justasitsounds-

    bingo, sounds plausible, thanks!

  15. mxh says:

    Sanjiva

    the ms venous insuffieciency idea is interesting, but there isn’t much independant verification of it. I am actually starting on a project investigating it with MR venography. Unfortunately it will be a while before we have any results.

    As for this story, I have been to several talks by Laurys and know some people who worked with him and I don’t think that he’s a quack, but I suppose he could conceniently ignore the FC stuff since this story fits with his ideas.

  16. tcw says:

    Thanks for the post, it increased my respect for this site.

    Basiorana, there are no “plugs” to pull in these cases, only deprivation of food and water if you want to euthanize someone, or lebensundlebenswerten, as they used to say in a country that overran Belgium a few years ago.

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