Sad news. What a horrible situation.
Posted by SoaPiNuReYe (Member # 9144) on :
Heard about this today. I would go crazy if something like that happened to me.
Posted by Orincoro (Member # 8854) on :
I dread the false equivalency that must already have been drawn by some to the Schiavo case.
Posted by AchillesHeel (Member # 11736) on :
And it started in his early twenties, he missed out on all that life. On the other hand he did survive a car crash and is now concious whereas many people die at incursion.
Makes me worry about comfortable modern medicince has become with certian diagnosis.
Posted by Orincoro (Member # 8854) on :
It shouldn't. You're in better hands today than at any time in human history. Remember, the alternative not long before this man suffered his accident would have been death, not a 20 year coma. The reporting of extreme cases leads to an understandable amount of observer bias- you are now aware of a single false diagnosis, because you are much more likely to hear about any outlying case involving the diagnosis of a coma. And yet, it is likely that false diagnoses are in fact more rare than they have been in the past. I would comment that science education is really going down the tubes these days, but the truth is that the observer biases generated by the media is a result of ever more readily available news. You just have to think critically to stop yourself from jumping to silly conclusions.
Do you worry that crime rates in the United States are sky rocketing? Because the phenomenon in the American media has long been an escalation in crime reporting despite a falling national crime rate over two decades.
[ November 23, 2009, 11:08 PM: Message edited by: Orincoro ]
Posted by Launchywiggin (Member # 9116) on :
I'm with Orincoro--this story, while sad, is more a testament to how amazingly fortunate we are to live in a time when medical advances allow this man to have a life again. That's the real story.
Posted by Strider (Member # 1807) on :
yeah, I also agree with a lot of what Orincoro said. I had similar thoughts after reading the article.
I'm also insanely curious to hear more from the man who the story is about. Was he really conscious for 23 years with no way to communicate? Were his senses all functioning normally? What was his day to day, moment to moment conscious experience like? What a horrible, yet fascinating thing to go through.
Posted by sndrake (Member # 4941) on :
quote: The reporting of extreme cases leads to an understandable amount of observer bias- you are now aware of a single false diagnosis, because you are much more likely to hear about any outlying case involving the diagnosis of a coma. And yet, it is likely that false diagnoses are in fact more rare than they have been in the past. I would comment that science education is really going down the tubes these days, but the truth is that the observer biases generated by the media is a result of ever more readily available news. You just have to think critically to stop yourself from jumping to silly conclusions.
Orincoro,
I think that you may be jumping to conclusions, albeit more comfortable ones. The last line of the article mentions that Laureys has conducted research that shows evidence of some consciousness in some 40% of people labeled PVS.
That's consistent with other studies in the UK and (rare) in the US. In fact, a team in the UK uncovered a high misdiagnosis rate using low-tech means - having staff regularly evaluate, stimulate and attempt to interact beyond the time when it was considered worthwhile to do so.
There's not a lot of money and enthusiasm going into that research in the US - for many reasons.
1. It opens the question of how many people have been taken off ventilators or feeding tubes while aware but unable to communicate;
2. Once you discover consciousness, what then? Currently, these individuals are warehoused or die through withdrawal of ventilators or feeding tubes. Active rehabilitation is a lot more expensive than either of those.
3. It also potentially decreases the number of organs available for donation through the "donation after cardiac death" protocol. (vent removal, with organs removed shortly after the heart stops beating)
Posted by Javert (Member # 3076) on :
Forgive me for dropping the skeptical foot down, but has anyone else seen the videos of this gentleman yet?
They're using 'facilitated communication', which is essentially a nurse or helper picking up the person's hand and typing the screen for them. It has been used with severely autistic people in the past and appears to be entirely bunk.
I really hope someone looks into this. Either the woman should be blindfolded or things should be set up in some way to determine if this man is actually communicating or not.
I hope for the sake of his family that he is communicating. But I have a sick feeling in my stomach that this is fake...whether the helper is lying or fooling herself, who knows.
Posted by sarcasticmuppet (Member # 5035) on :
wasn't there a story about a guy who learned to twitter using his brain and some kind of nonvocal character selection software? If technology allows them to communicate without assistance, would that be better?
*edited my post for a better attempt at clarity.
Posted by Mucus (Member # 9735) on :
Yes. That clip does look awfully suspicious.
Posted by Javert (Member # 3076) on :
And just to be clear, the question of whether or not he's conscious is not necessarily contingent on whether or not this facilitated communication is bunk.
Posted by Mucus (Member # 9735) on :
Indeed. Could you imagine being stuck in your body for 23 years with no way to communicate and then someone starts making stuff up on your behalf, oy.
Posted by PSI Teleport (Member # 5545) on :
What I'm confused about is the fact that this man can smile and open his eyes and look around. Is that possible for a person in a coma?
Posted by Orincoro (Member # 8854) on :
quote:Originally posted by sndrake: I think that you may be jumping to conclusions, albeit more comfortable ones. The last line of the article mentions that Laureys has conducted research that shows evidence of some consciousness in some 40% of people labeled PVS.
I didn't author those studies, but neither did you, and neither did the person who stated that statistic in the article. You and I don't really know what "some consciousness" means. Because the article actually says that %41 of the patients in the study were in a "minimally conscious" state- which, when you look at a definition on the wiki, sounds like a coma with sprinkles, not exactly a travesty for going unrecognized.
Personally, I feel completely comfortable with the idea that if I stop moving or attempting to communicate, everyone will think I'm essentially dead, because then I would be just that.
Posted by MattP (Member # 10495) on :
quote:They're using 'facilitated communication',
Ah crap.
Posted by Mike (Member # 55) on :
quote:Originally posted by Orincoro: Personally, I feel completely comfortable with the idea that if I stop moving or attempting to communicate, everyone will think I'm essentially dead, because then I would be just that.
Really? How much of your identity is tied up in your brain's outputs (i.e. muscle control) and how much is a property of your brain itself?
Posted by Orincoro (Member # 8854) on :
quote:Originally posted by Mike:
quote:Originally posted by Orincoro: Personally, I feel completely comfortable with the idea that if I stop moving or attempting to communicate, everyone will think I'm essentially dead, because then I would be just that.
Really? How much of your identity is tied up in your brain's outputs (i.e. muscle control) and how much is a property of your brain itself?
:sigh: People say they're dead when they have life sentences in prison, or when a spouse dies. I consider the loss of all communication and interaction with the outside world to be akin to death. You think of it however you like.
Posted by sndrake (Member # 4941) on :
quote:I didn't author those studies, but neither did you, and neither did the person who stated that statistic in the article. You and I don't really know what "some consciousness" means. Because the article actually says that %41 of the patients in the study were in a "minimally conscious" state- which, when you look at a definition on the wiki, sounds like a coma with sprinkles, not exactly a travesty for going unrecognized.
Actually I *have* read a number of the studies. I don't have time to dig out references right now, but there is quiet concern from prominent US neurologists about the issue. (I have brief BBC phone-in I have to do in a little over 30 minutes.)When I say "quiet" - I mean that the concerns don't reach much beyond the articles published in the journal "Neurology."
Edit to add: In a number of cases - especially the UK - it was much more than a case of "coma with sprinkles." I'll dig out the abstract later today.
[ November 24, 2009, 12:23 PM: Message edited by: sndrake ]
Posted by Mike (Member # 55) on :
quote:Originally posted by Orincoro: :sigh: People say they're dead when they have life sentences in prison, or when a spouse dies. I consider the loss of all communication and interaction with the outside world to be akin to death. You think of it however you like.
Fair enough, though usually I interpret that as metaphorical speech. If there's a functioning brain in there, to me that's not death, only severe imprisonment. If you have the potential to be able to move a cursor or type with your brain (and they're working on this, yes?) then you're not dead.
Posted by Tatiana (Member # 6776) on :
Being in a coma is not an on off switch, yes no decision either. I found this when my brother in law's sister was in a bad auto wreck. Each day the doctors gave her a score that was like an alertness, consciousness score as she was coming out of a coma. There was never an instant when she just "woke up", rather, it was a gradual process. On the other hand, my college roommate's little brother fell and cracked his skull when he was little, and was in a coma for something like 10 days and then woke up and said "I've come back!" one day so apparently it can be a sudden awakening sometimes too.
Posted by sndrake (Member # 4941) on :
quote:Originally posted by Orincoro: I dread the false equivalency that must already have been drawn by some to the Schiavo case.
greetings from the road, ignore my lack of caps
it is already happening! though it is worth noting that it is important to increase the use of scanning technology to make sure that a diagnosis of p.v.s. is correct.
Posted by DDDaysh (Member # 9499) on :
I don't know... 23 years is an awfully long time. I'm with Orincoro on this. I'm just not all that interested in continuing to breathe of the point of breathing has been taken away.
Of course, I believe in a soul. I believe that there is "something next", so sitting around waiting for 23 years instead of moving on seems like a tragedy to me. I'm also an organ donor - what other lives could my body parts have lived if I hadn't been keeping them tied up in my dreamland?
Posted by Rakeesh (Member # 2001) on :
quote: Of course, I believe in a soul. I believe that there is "something next", so sitting around waiting for 23 years instead of moving on seems like a tragedy to me. I'm also an organ donor - what other lives could my body parts have lived if I hadn't been keeping them tied up in my dreamland?
I'm not really sure where you're going with this.
Is it a tragedy? Well, unquestionably. Would it be better if he died instead of enduring those 23 years? Well, apparently he doesn't think so, or if he does or did he's not admitting it.
I dunno. Maybe I'm misreading, but it sounds quite a bit like you're saying he should've just died, that that would've been better.
As for comparisons to the Schiavo case...what I dread almost as much as those likening these two cases are those who insist (or suggest) that they have almost nothing in common.
Posted by Mucus (Member # 9735) on :
quote:Originally posted by Rakeesh: ... Well, apparently he doesn't think so, or if he does or did he's not admitting it.
"She" maybe.
quote:A leading bioethicist, however, expressed skepticism that Houben was really communicating, saying the responses seem unnatural for someone with such a profound injury and an inability to communicate for decades. ... Arthur Caplan, a bioethics professor at the University of Pennsylvania, said he is skeptical of Houben's ability to communicate after seeing video of his hand being moved along the keyboard.
"That's called 'facilitated communication,' " Caplan said. "That is ouija board stuff. It's been discredited time and time again. When people look at it, it's usually the person doing the pointing who's doing the messages, not the person they claim they are helping."
quote: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.
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."
Dr. James Bernat of Dartmouth Medical School said he could not comment on the facts of Houben's case specifically. However, he called Laureys "a very rigorous scientist and physician ... one of the world's leaders" in the field of brain imaging in people with consciousness disorders.
Bernat is considered one of the top experts in the USA on the vegetative state and other disorders of consciousness.
Posted by The Rabbit (Member # 671) on :
There are somethings in this story that just don't seem to line up to me. Something seems to be missing.
He is able to move his eyes, to push a mouse with his foot and other things. Has he been able to do those things for the past 23 years or has he experienced some sort of recent improvement in his physical paralysis.
Why didn't anyone notice over the past 23 years that he could control his eye movements? Didn't anyone try asking "If you can understand be blink twice?" If he could move his foot, why didn't he try doing that to communicate earlier? If he was trying for years to communicate by blinking his eyes or moving his foot, why didn't any body notice?
Maybe there are answers to these questions. Maybe after Laurey's detected the high level brain activity, they developed some sort of therapy that was able to enhance his ability to move. Maybe there is some other explanation. But something is clearly missing from this story.
People suffering from total paralysis frequently communicate through things like eye movements. That part isn't novel. If he can do that now, why did it take them 20 years to determine he was conscious?
Posted by sndrake (Member # 4941) on :
Rabbit,
At least part of the reason these things can go unnoticed is that people with labels of PVS can and do move around to an extent, but it's regarded as random. In many - maybe most - cases that's true. But it means that subtle attempts to communicate can go unnoticed.
It's also not that unusual for medical professionals to discount the reports of family members who report seeing responses. It's complicated - sometimes people *do* assign meaning to random movements and sometimes they are on target. But some professionals get to the point where they discount all such reports by famiilies, especially where the diagnosis is a long-term one.
Here's more from the article I linked above:
quote:American experts acknowledged a vegetative state diagnosis can often be wrong. But in most cases, they said, it involves a patient who is minimally conscious, whose muted and intermittent signs of awareness might be overlooked, rather than a patient like Houben, who is fully conscious but paralyzed.
Experts blamed the difficulty of diagnosis, insufficient training of doctors and a lack of follow-up to look for subtle signs that a once-vegetative patient has actually improved.
"Many people recover over time," said Dr. Joseph J. Fins of the Weill Cornell Medical College. "It's very easy for the label that is affixed at one point to sort of become eternalized, and so no one questions the diagnosis."
Posted by Eaquae Legit (Member # 3063) on :
sndrake is already saying what I want to say. (Thanks again, Mr. More-Eloquent-Than-I! ) With regards to facilitated communication, it can be easily abused but it is not entirely nonsense. I know anecdotal evidence is not proof, but seeing even a small number of cases where it is implemented correctly demonstrate that it can work. (A particularly memorable night where one of my disabled housemates expressed theological opinions that shocked and appalled his facilitator springs to mind, or the day his mother was facilitating and he told her to go away.)
The other important thing to note is that everyone here saying "I could never live like that" most likely would find they could. When people without disabilities are found to have "qualities of life" generally equivalent to those with disabilities:
Bach, J. R., Campagnolo, D. I. (1992). Psychosocial adjustment of post-poliomyelitis ventilator assisted individuals. Archives of Physical Medicine and Rehabilitation, 73, 934-939.
Nantais, D. & Kuczewski, M. (2004). Quality of life: The contested rhetoric of resource allocation and end-of-life decision making. Journal of medicine and Philosophy, 29, 651-664.
People say, "I could never live like that," a lot more than they say its obvious corollary, "I could definitely kill myself to avoid or get out of living like that." Suicide to avoid pain almost always sounds nicer in the abstract than in reality.
Posted by kmbboots (Member # 8576) on :
I think that I could live that way if I had to better than most.
Posted by sndrake (Member # 4941) on :
quote: I know anecdotal evidence is not proof,
One of the delightful ironies of Art Caplan's "debunking" of this misdiagnosis and the person's ability to communicate is his emphasis on empirical evidence. In a recent essay, he politely but firmly disagreed with Ezekiel Emanuel's call for bioethicists to become less political and more empirical in their approach. (this was a keynote speech at a major bioethics conference)
Open up any number of bioethics texts and there's a very good chance that the use of stories to advocate policies outnumber the times that empirical data are used.
Posted by Mucus (Member # 9735) on :
Re: memorable night
Well, those anecdotes could still be staged or something. Part of the point of the Ouija board comparison is that one can get seemingly surprising results.
In any case, if he can control blinking or move his foot, it would seem to be a reasonably simple exercise to see whether communication can be done that way, either with yes/no questions or with some morse-code-like setup. That should clear up the doubt pretty quickly.
Posted by The Rabbit (Member # 671) on :
quote:Originally posted by Mucus: Re: memorable night
Well, those anecdotes could still be staged or something. Part of the point of the Ouija board comparison is that one can get seemingly surprising results.
In any case, if he can control blinking or move his foot, it would seem to be a reasonably simple exercise to see whether communication can be done that way, either with yes/no questions or with some morse-code-like setup. That should clear up the doubt pretty quickly.
It seems like it would be pretty straight forward to combine this with facilitated communication. You said up a system so that every statement that is formulated using the facilitator must be either confirmed or denied using an unambiguous foot or eye movement.
Posted by sndrake (Member # 4941) on :
Rabbit,
I just finished a blog entry about this and made a similar recommendation - although not to the extent that you recommended.
I took on bioethicist Art Caplan's "debunking" of the misdiagnosis in three parts. Some of what I wrote is similar to what I've already written here. I alerted Caplan (not the first time we've exchanged emails)- be interesting if I get a response to this one.
If anyone is interested, you can find it here.
Posted by Eaquae Legit (Member # 3063) on :
Foot and eye movements are not the only things available. There is a very broad range of facilitated communication methods. In the case of my friend, he has Down syndrome and autism and has a cheeky, slapstick sense of humour, loves car rides and beer, and is quite healthy and active. Not everyone who uses FCMs is paralysed or in a coma-like state.
Posted by The Rabbit (Member # 671) on :
quote:Originally posted by sndrake: Rabbit,
At least phart of the reason these things can go unnoticed is that people with labels of PVS can and do move around to an extent, but it's regarded as random. In many - maybe most - cases that's true. But it means that subtle attempts to communicate can go unnoticed.
I still think there is something missing in the story. The story makes sense if this man has slowly improved over time, so that initially he truly was completely unresponsive. If he slowly improved over time I can see how it might have been missed for a long time.
But this story implies he has been fully conscious for the full time. I would expect that in the initial phase after his accident, there should have been attempts to thoroughly assess his level of cognition. What I can't tell from the article is if their was negligence in doing these assessments properly early on or if they were properly done initially but not repeated after an initial negative outcome or if they were repeated frequently and he only recently improved to the point where he could respond by even simple movements. There is also the possibility that even the simple movements he is using to communicate have only become possible because of therapy he received after brain scans showed high levels of brain activity.
I see that as an important aspect of the story that's missing. If he was trying to communicate through eye movements and foot taps for 20 years but people just weren't observant enough to notice its a very different story than if people have been carefully monitoring and lovingly observing him for years and though their vigilance have finally found a way to help him communicate. The information given in this story doesn't distinguish between these two very different stories or the myriad of other possibilities between those extemes.
[ November 25, 2009, 06:54 PM: Message edited by: The Rabbit ]
Posted by Uprooted (Member # 8353) on :
SSSSSHHHHHHHHHHOOooooocking.
Posted by Uprooted (Member # 8353) on :
Was that directed at me or just at the article, Orincoro? Because I don't recall claiming that there was anything shocking about it and don't quite get the heavy sarcasm.
Posted by dabbler (Member # 6443) on :
I read it as "Yep, figured as much."
Posted by Javert (Member # 3076) on :
quote:The sceptics said it was impossible – and it was. The story of Rom Houben of Belgium, which made headlines worldwide last November when he was shown to be "talking", was today revealed to have been nothing of the sort.
Dr Steven Laureys, one of the doctors treating him, acknowledged that his patient could not make himself understood after all. Facilitated communication, the technique said to have made Houben's apparent contact with the outside world possible, did not work, Laureys declared.
Posted by Mucus (Member # 9735) on :
Ah facilitated communication.
Posted by Kwea (Member # 2199) on :
Yeah, Uprooted, it didn't seem directed at you, more at the fact that we were already challenging the style of communication.
Posted by Uprooted (Member # 8353) on :
Thanks, guess I was being overly tetchy that day.
Posted by Orincoro (Member # 8854) on :
Yeah, not directed at you. I was just annoyed with the "it's a miracle!" people who were basing it on, well, not very much.
Posted by King of Men (Member # 6684) on :
Gah. You'd think even the grauniad could manage to give the two lines of information it takes to explain how the communicator was debunked, rather than three paragraphs of information-free quotes from the doctor. The guy was shown objects while the communicator was out of the room, then asked to name them using the FC method. No go. Done.
Posted by Uprooted (Member # 8353) on :
Thanks, KoM. Here's a link to a more informative article.
They are still being rather kind to the speech therapist:
quote: The tests determined that he doesn't have enough strength and muscle control in his right arm to operate the keyboard. In her effort to help the patient express himself, it would seem that the speech therapist had unwittingly assumed control. This kind of self-deception happens all the time when this method -- known as "facilitated communication" -- is used.
I wonder. Self-deception, or just deception?
Posted by Mucus (Member # 9735) on :
I dunno, I'm leaning toward deceptive but I don't know if they'll be able to legally do anything about it. It does sound awfully scammy though.
quote:Laureys says its possible Houben passed the earlier test with car keys, which took place years ago, because his facilitator had been in the room and saw the object. Laureys says he tried repeatedly to confirm the result with Houben's original facilitator. But the results were always inconclusive.
"If you have answers like I don't want to do the test or you don't trust me, those kinds of answers well then you cannot say anything," Laureys says.
The recent tests were done with a different facilitator, who was prepared to take part in the more rigorous experiment.
It is a fairly well known phenomenon, and a lot of times the person who is fooled is a family member who desperately wants it to be true. I don't know if it was deliberate, but I would be willing to give the FC the benefit of the doubt myself. There IS some movement in his arm, and she probably directed her to words she thought he would be saying without meaning to lie of deceive.=
Same sort of observer bias happens all the time when gorillas are taught sign language. They can learn it, but the actual amount of signs they know, and their actual comprehension of those signs, has been widely debated.
The people who teach them claim they have huge vocabularies, but they are often the only ones who can "translate" most of them. It's not that they lie, but they most certainly have significant observer bias. People who know signing but do not work with the animals often cannot make any sense of what they are supposedly saying.....and often the people working with them report communications that show a grasp of grammar and syntax than the creatures do not have themselves.
Posted by Orincoro (Member # 8854) on :
I'm sorry, how is it not the first thing you do in a situation like that to send the facilitator out of the room, give the patient a keyword, and then bring the facilitator back in so that the patient can give the keyword back? That should be easy. If it isn't easy, then obviously something may be amiss. How does it take them months to get around to doing that?
Posted by The Rabbit (Member # 671) on :
quote:Originally posted by Orincoro: I'm sorry, how is it not the first thing you do in a situation like that to send the facilitator out of the room, give the patient a keyword, and then bring the facilitator back in so that the patient can give the keyword back? That should be easy. If it isn't easy, then obviously something may be amiss. How does it take them months to get around to doing that?
Did you read the articles? This is precisely what Laurey did.
quote:When Houben and his family showed up at a 2006 appointment with the unexpected therapist in tow, Laureys performed an unscientific test of his own: with the therapist out of the room, Laureys showed Houben objects. When the therapist came back in to facilitate, Houben was able to name the objects. Laureys was impressed, though his focus remained on the effectiveness of the CRS test.
After this initial positive result, Laurey followed up with more scientific studies of the facilitated communication and concluded it didn't work.
There really isn't enough information in the article to determine why the initial unscientific tests were positive but later more controlled ones were not.
Posted by kmbboots (Member # 8576) on :
They might have been tipped off by the fact that the communication device had "ouija" stamped on the bottom.
Posted by Uprooted (Member # 8353) on :
Speaking of which, this question must also be asked:
quote: "It's like using an Ouija board," said Arthur Caplan, a professor of bioethics at the University of Pennsylvania.
(from the Guardian article Javert linked to)
Did Caplan really say "an Ouija board"? Or did the article writer put it that way? Because if Caplan's American, I suspect he said "a Weejee board." I don't know how the Brits pronounce it that would warrant the article "an." "Ooo-ee-jee board," perhaps?
![[Wave]](graemlins/wave.gif)
) With regards to facilitated communication, it can be easily abused but it is not entirely nonsense. I know anecdotal evidence is not proof, but seeing even a small number of cases where it is implemented correctly demonstrate that it can work. (A particularly memorable night where one of my disabled housemates expressed theological opinions that shocked and appalled his facilitator springs to mind, or the day his mother was facilitating and he told her to go away.)