Nov 25 2009

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 broken, 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 generate conscious 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 properly 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.)

Share

31 responses so far

31 Responses to “Man in Coma 23 Years – Is He Really Conscious?”

  1. Tom Nielsenon 25 Nov 2009 at 10:46 am

    Wow that facilitator is really angering me, especially in the second video. “He” even types faster than a lot of people on keyboards.

    This is even worse than mothers using using a variant of facilitated communication, where mothers flashes a card with 43 red dots for 2 seconds, and then hold up two cards. One of them with 43 written on it, and the other card with a wrong number. From the videos I have seen of this phenomenon, it is clear that the mothers are signalling what the right card is.

    e.g.

    http://www.youtube.com/watch?v=QBP3sMo4gtQ
    http://www.youtube.com/watch?v=Y6xH3Kg6r60&

    I could be wrong, but it seems more plausible that it is the mother, and not the kid doing the math.

  2. grabulaon 25 Nov 2009 at 10:54 am

    Wouldn’t it be possible to test if this is FC by “blinding” the individual holding Houben’s hand? If they can’t see the keyboard they can’t guide him to anything meaningful yes?

  3. provaxmomon 25 Nov 2009 at 11:02 am

    Why not? I type quite fast without looking. Assuming it’s a standard keyboard, I can type all kinds of nonsense without looking ;)

  4. Steven Novellaon 25 Nov 2009 at 11:04 am

    They won’t buy that – they claim they are basing the movements on subtle clues, but they still need to see what letter he is trying to type.

    Anyway – that’s not necessary. Just allow Houben to read a question that the facilitator cannot see and then answer it, or repeat it. Do it is a way to eliminate the possibility of cheating on the part of the facilitator.

  5. Steven Novellaon 25 Nov 2009 at 11:05 am

    I know provaxmom was being facetious, but to clarify – I can type without looking at the keyboard too – using finger position. But no one in the world can single-finger type without looking at the keyboard.

  6. jonny_ehon 25 Nov 2009 at 11:29 am

    Right, in order to ‘hunt and peck’ a keyboard, you need to hunt. Try it yourself, you’ll come out with gibberish. Unless you feel around the keyboard, but Houben cannot do that due to his brace.

  7. superdaveon 25 Nov 2009 at 11:51 am

    Also, the modern electronic keyboard would have just started to become popular just when he had the injury. Unless he was a reporter or someone else who frequently used a typewriter, he would not be anywhere near as familiar with the qwerty layout as people are today.

  8. Belgarathon 25 Nov 2009 at 11:55 am

    Well, his keyboard is a flat screen (like a big iPhone) even if he could feel it, there would be no way to tell what letter you were on.

    Dr. Novella, in the second video you linked, can you tell me what is happening at approximately 7-10 seconds in? This appears slightly different than Schiavo to my lay person eyes. He has a large reaction to the mother speaking to him. I never saw any video of Schiavo reacting like that, which makes me think that he has some sort of consciousness there.

    The FC piece of this is obviously bunk, but that video shows at least some sort of reaction to external stimuli.

  9. Dietrichdanielson 25 Nov 2009 at 11:56 am

    Wow. Michael Shermer had posted a number of tweets pointing out this was clearly FC, but I had no idea how blatantly obvious it was until watching the clips. My son has CP, so I am particularly sensitive to this subject. I’ve been pleased that this sort of thing has never been mentioned at his school.

  10. gcolleron 25 Nov 2009 at 12:01 pm

    Possibly having a facilitator that doesn’t read/write English would be a decent test. It controls for understanding the question and typing answers without taking away any possible requirement for vision in the job.

  11. gerryfromktownon 25 Nov 2009 at 1:05 pm

    They won’t go for alternative facilitators either – its all about the “special relationship” between facilitator and patient.

    Don’t get fooled – this is all about the facilitator – its her scam and she is controlling the setup.

    Here is an interview with her: http://www.accessinterviews.com/interviews/detail/linda-wouters/18085

    “Mrs Wouters, 42, was assigned to Mr Houben and they began to learn the communication technique that he is now using to write a book about his life and thoughts. “I thought it was a miracle — it actually worked,” she said.”

    Of course, she speaks English – how else could she be operating the scam.

  12. Eternally Learningon 25 Nov 2009 at 1:49 pm

    It seems to me that the simplest way to test this that the facilitators should agree with if they believe they are really facilitating communication would be to take the facilitator out of the room and ask the patient a specific question. Then bring the facilitator back in the room to facilitate the answer. If it matches up then that’s strong evidence that the patient is communicating.

  13. [...] The incomparable Dr Novella of the SGU and SBM has posted his take on this news item, as I hoped he would. Get the thoughts of a neurologist.] Possibly related posts: [...]

  14. mindmeon 25 Nov 2009 at 4:57 pm

    ||Right, in order to ‘hunt and peck’ a keyboard, you need to hunt. Try it yourself, you’ll come out with gibberish. Unless you feel around the keyboard, but Houben cannot do that due to his brace.||

    I remember the PBS show on this years ago got the fastest typist in the world (apparently someone who is very familiar with the QWERTY keyboard). They asked her to type a simple sentence using a single finger (peck) but did not allow her to see the keyboard (she could not “hunt”). She only managed to type gibberish.

    Stunning, stunning, stunning the media has fallen for this.

    Did I mention it’s stunning?

    Even if they blinded the FC woman and coma man fails, people will still claim “oh he was nervous”. He wasn’t too nervous to type out long eloquent sentences about being born again when a TV camera was in his face. But I’m sure if he fails a simple test, that will be the explanation.

  15. daedalus2uon 25 Nov 2009 at 5:28 pm

    If they try to do a real test, the FC woman will start receiving protests from the coma man. Any conditions that make it impossible for her to cheat will cause unacceptable difficulties with the coma man which only the FC woman will be able to understand and articulate.

  16. empiricalgod2on 25 Nov 2009 at 6:30 pm

    Thank you Steve.
    When i read the news story i felt really sorry for the guy.
    But from what i gather from reading your blog entry, it’s still possible that he might be conscience and have some sort of awareness, but it’s just the bogus facilitation that is added to the story.

  17. Maireadon 25 Nov 2009 at 6:56 pm

    http://www.timesonline.co.uk/tol/life_and_style/health/article6930608.ece
    ———————————————————————–
    The novel method of communication has not convinced all medical experts, however. “It’s Ouija board stuff. It’s been discredited time and again when people look at it. It’s usually the person who is doing the pointing who is doing the messages,” Arthur Caplan, Professor of Bioethics at the University of Pennsylvania, said after watching a video of the pair.

    The spectacle is so incredible that even Steven Laureys, the neurologist who discovered Mr Houben’s potential, had doubts about its authenticity. He decided to put it to the test.

    “I showed him objects when I was alone with him in the room and then, later, with his aide, he was able to give the right answers,” Professor Laureys said. “It is true.”
    ————————————————————————-

  18. llewellyon 25 Nov 2009 at 9:39 pm

    But no one in the world can single-finger type without looking at the keyboard.

    This is not true. Typing with one finger without looking is a skill like any other, and it can be learned with only moderately more difficulty than normal touch typing (provided one can feel the keyboard). It is rare only because learning it has much less benefit than learning to touch type normally. Typing with one finger with (for example) a tongue depressor strapped to your finger, in such a way that your finger does not touch the keyboard, without looking, may be impossible, but I suspect that as long as the keyboard remained still, and in a known position relative to you it would be learnable, but with great effort (say, 4 hours a day for 180 days).
    In any case – your claim that “no one in the world” can do it is not necessary for your argument; the other points you make remain intact, and to claim that one-finger typing without looking is unlikely would serve as well.

  19. Belgarathon 25 Nov 2009 at 10:42 pm

    Doctor Novella’s point is spot on target. Look at the videos again. The keyboard is a flat panel like a big version of the iPhone. You cannot type on that with one finger, let alone touch type, without looking at it.

  20. HHCon 26 Nov 2009 at 12:34 am

    Finger tapping is used as a test in Reitan’s exams. But to interpret miniscule movements in an index finger of a locked-in patient is akind to examination heresy. I would love to hear this fellow play one fingered tones on the piano.

  21. JH-manon 26 Nov 2009 at 5:40 am

    Well, I must be learning *something* from Neurologica. As soon as the first article appeared in our local newspaper here in Belgium, I drew the parallel with FC.

    I sense we may well be witnessing a very unfortunate situation escalating here. As Steve pointed out, Dr. Laureys is far from a quack. No question that he is a competent man, and probably also sincere. There was a very short follow-up interview in the papers in which he for example explained that his science has been used in euthanasia debates (even in the Vatican I believe), and he stated that he found it unfortunate that those debates were not as scientific and fact-centered as he would have preferred. And that he tried to stay away from stating his opinions about those issues because that was not a scientific matter but an ethical one. So it doesn’t seem like he has some hidden agenda.

    So he likely is competent and sincere and all, but of course we know that this doesn’t make someone immune against being deceived and mislead. If, for whatever reason, he is not familiar with the FC debacle, then he is just as prone as anyone else to fall into the trap.

    If this is the case, I wouldn’t like to stand in his shoes at the moment. Imagine that he decides to do the proper blinded tests and finds out that Houben’s level of consciousness has been greatly exagerated, or even almost entirely made up out of nothing. Even just *suggesting* properly controlled tests would probably grieve the relatives. Actually finding out that there is almost no consciousness there after all, must be totally heartbreaking. One of those awkward damned-if-you-do, damned-if-you-don’t situations.

    Today there was another follow-up article in the newspaper which actually presented a famous American bioethicist (forgot his name) who pointed out exactly the problems with FC. Although the article failed to address it in depth (not all that much said about suggestions on how to properly test the communication), that did pleasantly surprise me. The article also shortly presented the reaction of Laureys&Co. The lack of detail about the safeguards they used in those tests is not very encouraging thus far.

    Let’s hope Dr. Laureys gives some more feedback to Steve’s mails. And let’s hope they aren’t too deeply into the sh*t yet to gracefully retract the claims if they turn out to be bogus…

  22. Maireadon 26 Nov 2009 at 10:59 am

    Has nobody any comment about the snippet I posted yesterday from The Times, in which Laureys is quoted as saying Houben and his aide passed the test for consciousness and non-interference, respectively?

  23. tmac57on 26 Nov 2009 at 11:54 am

    Mairead-”Has nobody any comment about the snippet I posted yesterday..” I heard about that also, and it does raise questions. How rigorous were the controls, was the test repeatable, did they film it, so others can review it? Also, it still doesn’t address the apparent bogus FC that is shown in the second video posted. Maybe there is some communication going on, but there is also something fishy going on as well IMHO. I hope that this will be studied in a more careful fashion with an eye toward ferreting out cheating and bias. It would be really great if this turns out to be real, but its just too early to tell at this point.

  24. mindmeon 26 Nov 2009 at 1:30 pm

    Mairead

    The article gives us scant information about what controls were in place to guard against the doctor leaking info to the FC person, what the doctor would accept as a correct answer, etc.

    The implications of this, if true, are stunning. Laureys would well be on the way to a Nobel prize in medicine. Step one, though, run a simple, well controlled test. Surely the Houben’s family would like to confirm for other families around the world that they too can unlock a powerful, poetic, alive mind.

  25. Davidon 26 Nov 2009 at 6:14 pm

    Well done and much appreciated.

    I’ve based a post of my own (on Science Ain’t So Bad) on this blog entry.

  26. [...] Wednesday I wrote about Rom Houben, the 46 year old man who spent the last 23 years in an apparent vegetative state (PVS) following a [...]

  27. Anwer Pashaon 27 Nov 2009 at 8:15 pm

    Hope a second report will come soon on this issue but I am telling about my son Jawad Pasha as fully conscious and aware at many sites and he is still improving and now another PVS here also improved as Conscious. I am surprised to see these all comments. Now matters are comming clear. Main problem is loss of motor function not consciousness. Neurologists are still theirselve not clear on these issues and actually they are standing on many decades back theories and there is no success with them about PVS,MCS and LiS.

  28. Diggs747on 01 Dec 2009 at 7:38 pm

    Hey guys,I frequently listen to the skeptics guide and heard this story. I remember reading this article on digg, and am pretty pissed that I was suckered into believing this story. Please digg this story up on Digg so everyone can learn about the real facts and not the media hype.

    http://digg.com/health/Man_in_Coma_23_Years_Is_He_Really_Conscious

    thanks

  29. [...] the case of Rom Houben has come to media attention. He is a man in his 40’s who has been in an apparent coma for the [...]

  30. [...] of this brings me to the Rom Houben case. If you remember, I blogged about the man who was in a coma for 23 years, except he wasn’t in the kind of coma (persistent vegetative [...]

  31. LeeBon 17 Feb 2010 at 10:00 pm

    Way to go, Steve! I just heard the NPR report (Feb. 17) on this, and was pleasantly surprised to hear your voice representing the doubters in this case. It was short, but sweet. It is nice to know that the mainstream media (at least a relatively enlighted branch of it) has you on their experts-to-call list. Here is hoping they call on you more often!

Trackback URI | Comments RSS

Leave a Reply

You must be logged in to post a comment.