November 25, 2009

Man In Coma For 23 Years Not In Coma

i want to believe.JPG

Story: Man in "coma" for 23 years,

Then a neurologist, Steven Laureys, who decided to take a radical look at the state of diagnosed coma patients, released him from his torture. Using a state-of-the-art scanning system, Laureys found to his amazement that his brain was functioning almost normally.
My first instinct was to dismiss this.  "Radical" and "state-of-the-art" are terms that describe technology that has been essentially unchanged for ten years.  Either the old doctors missed it, or Laureys has better technology at his disposal.

Belgian doctors used an internationally-accepted scale to monitor Houben's state over the years. Known as the Glasgow Coma Scale, it requires assessment of the eyes, verbal and motor responses. But they failed to assess him correctly and missed signs that his brain was still functioning.
So there's one answer: they didn't bother to scan him in the first place, or at least update the scans over time.  They relied on a behavioral measure.   It happens-- complacency, routine... patient gets offloaded to a nursing home never to be heard from again.  It happens.

The moment it was discovered he was not in a vegetative state, said Houben, was like being born again. "I'll never forget the day that they discovered me," he said. "It was my second birth".

And there the science ends, and the politics begin.


What do you want this story to be about?

Many people thought this was a hoax, but not because of what I've described, but because of this:

"I had dreamed myself away... I screamed, but there was nothing to hear," he said, via his keyboard.
Here's a video, but the screen cap tells enough:

houben hand.JPGThat's a therapist's hand guiding his hand along the keyboard.  "Facilitated communication" is controversial.  Is it Ouija board stuff, or for real?  The Amazing Randi  and one quasi-famous bioethicist say FC is a fraud.  Debate on TV and message boards all focus on FC.

But that's not what the actual news stories are really about.  The articles don't even mention Facilitated Communication.  And Dr. Laureys doesn't mention it in any of  his scientific papers I've read.  Even if FC is a hoax, even if this patient isn't really communicating via FC, it doesn't mean he's not conscious.  Isn't that really the issue?

That's the hijack: Randi, and Caplan, and the public, can't interpret MRI scans.  So instead they'll interpret and argue what they can-- news videos.  That's politics.


What does Dr. Laureys want to be true?

I'd like to tell you I looked at the case write-up, but there isn't one.  That's very suspicious, but also completely besides the point, because for Laureys, the point isn't about Houben.  That's why he didn't even write it up.

What he wrote about, however, was better/newer applications of technology to detect consciousness.  We can debate whether fMRIs are really novel or just appropriate practice,  but what he is really doing is asking the European governments to pay for it.  From Laurey's perspective, he wants to change standard of care to regularly employ this technology.

Following this, it's no wonder the British press keyed in on it.


What about the Americans?

"We have to re-evaluate cases like Terry Schiavo."  Actually, we don't. 

For U.S. doctors the application of "high tech" scans is hardly novel, even getting Medicaid/Medicare to pay for it isn't such a struggle.  But the comparison to Schiavo's case  isn't correct: Terry Schiavo was scanned with an MRI, people just disagreed with what it said.  The Houben debate is whether we should be scanning in general.


For my money, the case is suspicious but:

The spectacle is so incredible that even Dr. Laureys 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."

Laureys would have to be insane to make up a lie of this giganticality, but anything is possible.


When i read the article (on... (Below threshold)

November 25, 2009 7:09 PM | Posted by Larry Koubiak: | Reply

When i read the article (on Wikinews) i was expecting to read about it in here. As i was reading, the first thing that came to my mind was "oh look, another medical fuck-up" and the fact that it happened in my country made me laugh somehow, since we europeans love to talk shit about how US is fucked up, specially their medical system.

And of course as every time i read about something in here, i actually learned what was really at stake there. Good old self-serving bullshit passed as a scientific breakthrough.
Which is sadly starting to be recurrent, at least from what i gather reading your blog.

There is one point i couldnt figure out in the article nor in here though...

They kept a man in a coma alive for 23 years?? Is that standard practice? Call me cold but this sounded quite like a case of Futile Medical Care.

I guess it is less and less acceptable for people to admit the fact that one is reduced to a vegetable state and his life is therefore not really "precious" or sacred.

But now i'm pushing forward my own opinion just like that doctor did, so i guess i'll leave it at that.

Keep on making me feel angry and sad, its healthy and will hopefully lead to some changes in my narcissistic brain.

Larry from Belgium

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We follow the same blogs, I... (Below threshold)

November 25, 2009 8:23 PM | Posted by popo: | Reply

We follow the same blogs, I think. I read freakonomics and wired and new scientist and the economist very regularly and when I saw this on wired yesterday I hoping you would look into it. And you did.

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Larry raises a great questi... (Below threshold)

November 26, 2009 2:36 AM | Posted by Jim: | Reply

Larry raises a great question. What's the rationale for keeping the patient alive for decades? Would Laureys argue that if fMRI confirms what the Glasgow scale had been indicating, then life support should be terminated? If so, then he has an easier financial argument to make in support of his case.

Unfortunately, using FC - even if it's valid - will be used as a red herring to sink his effort.

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Is it not worth keeping all... (Below threshold)

November 26, 2009 6:06 PM | Posted by Anonymous: | Reply

Is it not worth keeping all coma patients alive if there's a chance one might wake up? We could keep them all in a darkened room, called the coma room, and charge people to go in and start a tourist attraction called night of the arguably dead. I'd pay.

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Paralysed Belgian misdiagno... (Below threshold)

November 26, 2009 9:42 PM | Posted by Anonymous: | Reply

Paralysed Belgian misdiagnosed as in coma for 23 years
“Trapped inside but unable to communicate.” says the BBC reporter in the video.

Trapped inside and trying to communicate.
The only way out was to tell the psychiatrist that they were correct. I am insane but getting better. The Rosenhan Experiment.

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Is it the case the European... (Below threshold)

November 27, 2009 5:44 PM | Posted by ambrosen: | Reply

Is it the case the European hospitals are too cheap to use MRI to diagnose PVS now, or is it rather the case that they were too cheap to use it in 1986 when this man fell into his vegetative state?

If the second, and as far as I can tell, this man's situation was discovered by a review of PVS patients, then surely all that will happen is that the review of these patients will be stepped up.

But thanks for mentioning European healthcare. That gave me the chance to calibrate my scepticism meter for how I react when you touch a hot-button subject with me, much like the most informative articles in newspapers are ones you know about, because they give you insight into the point of view and level of sophistication of the newspaper.

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Facilitated communication? ... (Below threshold)

November 27, 2009 8:30 PM | Posted by john: | Reply

Facilitated communication? Who could buy into this as being valid? That's like claiming I can fly a plane but I just need an airline pilot to control my hands, feet and the instruments but I am doing the flying. I never cease to be amazed at the capacity for self deception in the world of "mental health".What a farce.

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The author of this blog is ... (Below threshold)

November 28, 2009 3:46 AM | Posted by Positivist: | Reply

The author of this blog is trying hard to discredit Randi and Caplan by confounding the issues. What's with referring to Caplan as "semi-famous"? How about respected? --which he is. But all the likes of Caplan are saying is further examination of this case is needed, b/c it's a no-brainer that the communications put forward to prove consciousness in this case are seriously flawed and follow in a long line of discredited cases.

Advice for the blogger here: Perhaps it is best to keep psych-dynamic analysis for those situations beyond scientific scrutiny.

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Why bother with all this sh... (Below threshold)

November 28, 2009 10:26 AM | Posted by J: | Reply

Why bother with all this shiny fmri-tomfoolery when a persons vegetative state can be figured out from a simple EEG via finding out whether the person reacts to an alternating stimuli with mismatch negativity or not.

I'd like to dwell deeper into this fmri-magic that proved this man is not in a coma. After all, even post-mortem atlantic salmons have been imaged to have brain activity.

And facilitated communication. There are a whole lot of false positives fed by the hope of the caregivers.

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Alone's response: Wrong... (Below threshold)

November 28, 2009 8:04 PM | Posted, in reply to Positivist's comment, by Alone: | Reply

Alone's response: Wrong. You fell for it.

I'm not confounding the issues, they are (and you are.) The reason the case needs to be re-examined has nothing to do with the FC. The FC doesn't matter, all that matters is whether the scans show he is conscious or not, since that's the issue here. OF COURSE FC IS BOGUS, but that fact tells you _nothing_ about whether this man is conscious. It is circumstantial evidence. It should not be admitted as evidence at all, because it unduly biases people.

You also fall for the "appeal to authority" bias. Caplan is respected, no argument. But that's irrelevant here, he's an ethicist. This is why I identified him as "quasi-famous"-- his utility to the article is only that he is known, not because he has any expertise in this case. "Oh, Caplan thinks it's a fraud, too." So? Read his article. Does he have any insights into the brain scans? No. Is he even able to judge whether FC is bogus? No. Randi, by contrast, is completely qualified for the latter (and I certainly am not trying to discredit him), but isn't relevant for the former. If he wants to use this case as an opportunity to discredit FC, by all means go. But you can't use Randi's discrediting FC to argue this man isn't conscious. Right? "But it's one piece of evidence." When a person's life is at stake, evidence can only be used in one direction. Again, this is why courts don't allow circumstantial evidence.

His and Caplan's role are distractions. Neither have any insights into whether "brains scans" show this man is conscious.

"Perhaps is is best to keep psych-dynamic analysis for those situations beyond scientific scrutiny." Well, ok, agreed. So why did they ask Caplan's opinion?

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Shermer tweets:# A... (Below threshold)

November 29, 2009 2:01 PM | Posted by R. Nebblesworth: | Reply

Shermer tweets:

# Aargh! CNN just bailed on FC Coma Man story, going w/ neuroscientist to explain brain scans & comas-fear of offending coma families-Cowards! 1:51 PM Nov 25th from web

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It's impossible to use neur... (Below threshold)

December 17, 2009 11:08 PM | Posted by Carrot: | Reply

It's impossible to use neuro scans to "prove" that someone is conscious. We still don't have any real understanding of what consciousness really is, much let where it is based in the brain. The fMRI just proves that there is brain activity, not that there is actual awareness.

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There was an excellent Law ... (Below threshold)

December 28, 2009 5:16 PM | Posted by Jaye Ramsey Sutter: | Reply

There was an excellent Law and Order episode about how fake FC is. It is merely television but it depicted the coma/disabled person's parents' desire to believe and the hospital's desire to get funded.

That Helen Keller/Annie Sullivan miracle of W-A-T-E-R is one hell of a trope.

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How could anyone think this... (Below threshold)

August 1, 2014 2:02 AM | Posted by Rivka: | Reply

How could anyone think this related to Terry Schiavo? She was obviously awake, made vocal sounds, could laugh and could cry. No vegetative state, or chance of being thought to be in one. SHe was a brain damaged, awake and conscious person.

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