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November 25th, 2009


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04:05 pm - Facilitated Communication
There was a report in all the news a couple of days ago about a man who doctors thought was unconscious/vegetative, but was actually conscious but paralysed, for 23 years? Here's the bbc report for example. Several lj friends linked to it, and I was convinced.

However, there is now quite a bit of talk among the sceptical community that the helper - who is 'helping' him move his hand on the keyboard - is actually doing the typing herself, with no input from him. I don't think people are saying that she is lying, just that she has fooled herself into thinking she is communicating with him.

Here's James Randi explaining his scepticism. I don't actually like Randi or his manner, but I think he may be right. Here is PZ Myers on the same topic. And here is the American Psychological Society statement on facilitated communication.

Here is a video, which seems to show the helper is overtly doing the typing (from 12 seconds in). I do agree with Randi that there needs to be some control or test that these are really his own answers. I'm surprised it has been reported so uncritically.

Here is a touching comment from a nurse on metafilter.
Families will run with this story as only a deeply loving person can: they refuse the possibility of death to their beloved. They will tell us, "But, didn't you hear on the news? They said that man was dead... who are you to decide?" Unfortunately, the rational answer "We are medical professionals" does not hold weight against arguments of the heart. We can bring so many back from the brink of death, but once the brain has been compromised, the body can live on. Family members will spend years convinced that their loved one is somewhere inside that husk of humanity; if only they could just convince others to believe them!

Then some person, perhaps without evil intentions, will tell them a way of proving it: facilitated communication. Just let this trained person hold this man's wasted hand and guide it to the right keys. And the aide will spell out those words that they have longed to hear: I love you, I miss you, I have been so lonely....and in their joy the family will reject reality just so they may have one more chance to communicate with the husband, wife, child or parent they lost so long ago.

Of course this does not prove he isn't conscious. He might be conscious and helpless, while someone moves his hand in a typing movement. But my hope is that he hasn't been hellishly trapped in a paralysed body, fully conscious, for 23 years. I hope he has been and still is unaware of any suffering.

(19 comments | Leave a comment)

Comments:


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From:iainjcoleman
Date:November 25th, 2009 04:08 pm (UTC)
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I'm surprised it has been reported so uncritically.

Why?
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From:communicator
Date:November 25th, 2009 04:10 pm (UTC)
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I expect better of the BBC than what I see here.
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From:iainjcoleman
Date:November 25th, 2009 04:17 pm (UTC)
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The BBC may have better standards of objectivity than other news outlets, but its journalists are no less prone to uncritically regurgitating whatever someone happens to tell them.
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From:communicator
Date:November 25th, 2009 04:19 pm (UTC)
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I've just read the Daily Mail now being slightly sceptical about the story, so I guess the game is up now.
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From:espresso_addict
Date:November 25th, 2009 05:41 pm (UTC)
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The film that was shown on last night's news seemed to show the helper typing with a speed & lack of indecision that made it seem incredible that the paralyzed man was dictating.
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From:communicator
Date:November 25th, 2009 07:25 pm (UTC)
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Yes. It was when I saw the film that I thought the reported story was wrong. I don't blame anyone for passing it on when it first made the rounds - it all sounded very plausible, the brain scan, the laborious typing - and then this.
From:jthijsen
Date:November 25th, 2009 07:23 pm (UTC)
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Actually there are two distinct assertions being made:

1.: He is conscious.
2.: He is able to tense muscles in his arm enough to let his helper do some seriously fast typing for him.

Assertion 1 seems to have been proven to the satisfaction of several medical professionals with a brain scan. Assertion 2, however, seems rather unlikely if you look at the tape.
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From:communicator
Date:November 25th, 2009 07:29 pm (UTC)
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Yes, I completely agree the two assertions are logically quite distinct. However, because of the scepticism raised by the 'assisted communication', I believe people are now questioning the brain scan story too. It may be that the brain scan interpretation boils down to the word of one guy - Stephen Laureys - who has a very distinct view. He thinks 40% of all people diagnosed as vegetative are actually conscious. That means he is well outside the mainstream. Of course he could be right, and the mainstream wrong, it's happened before, but it does mean his personal opinion isn't an unbiased assessment.
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From:espresso_addict
Date:November 25th, 2009 08:01 pm (UTC)
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He thinks 40% of all people diagnosed as vegetative are actually conscious.

If true, it's an appalling thought.
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From:dfordoom
Date:November 26th, 2009 02:29 pm (UTC)
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I thought that whole "facilitated communication" thing had been debunked years ago. But never underestimate the power of wishful thinking, or the lure of a possible book deal.
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From:communicator
Date:November 26th, 2009 04:56 pm (UTC)
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It seems it is debunked, and then comes back. The APA statement I linked to above dates to the early 90s I think.
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From:dfordoom
Date:November 26th, 2009 05:18 pm (UTC)
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When people really want to believe something there seems to be no way of stopping them.
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From:pinkdormouse
Date:November 27th, 2009 07:14 am (UTC)
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I feel for all the people involved in cases like these, but I feel very strongly that keeping someone alive for 23 years where there can't be much (if any) quality of life.

Maybe it's the difference between vet and medic training. We have to assess quality of life for practically every patient at some point, where they don't.
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From:julesjones
Date:November 28th, 2009 12:17 pm (UTC)
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One of my mother's friends is a nurse who was involved in the hospice movement in Australia in the early 80s. One of the problems they had then was active opposition from most doctors, who had been trained in the school of thought that you keep the patient going for as long as possible no matter what. Which had not been an unreasonable position thirty years before that, but by then was running into the problem of significant numbers of patients where medical advances put "quality of life" and "quantity of life" in direct opposition.

Things have changed dramatically since then, but doctors are still very wary of crossing the line from "assisting a suicide" to "murder", for both ethical and practical reasons. "Locked-in" cases are a particularly difficult area -- if you can tell from brain scans that there really is still someone in there, but you cannot communicate with them, how do you ask them what *they* want?
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From:pinkdormouse
Date:November 29th, 2009 05:34 pm (UTC)
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I'm not sure I have any answers, I just think that at some point there needs to be more public debate on the subject (witness the outcry everytime NICE makes a ruling, but we never get told by the media exactly what each treatment is improving in terms of quality vs length of life).

Personally I'd want to put more money into developing better and earlier diagnoses of potentially curable, otherwise fatal, conditions and into better relief of suffering for those that can't be cured. Even though those aren't necessarily the glitzy areas of medicine.
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From:julesjones
Date:November 29th, 2009 05:55 pm (UTC)
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It's often very unglamorous things that make the difference. The nurse in the oncology unit where my mother was/is treated told me that the modern anti-nausea drugs and other support drugs had made a difference of at least 10% in chemotherapy survival rates, simply by making it possible for more patients to cope with a full course of chemo.
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From:pinkdormouse
Date:November 29th, 2009 06:04 pm (UTC)
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That makes complete sense to me. I just wish R&D (at least the groups I've dealt with) weren't so overexcitable about every shiny new wonder drug they invent, and could occaisionally do the less glam stuff instead.
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From:communicator
Date:November 29th, 2009 05:57 pm (UTC)
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I think I feel the same way pinkdormouse. I think I would want to die, and all I can do is extrapolate my feelings, rightly or wrongly, onto others. I'd want to die from an overdose of painkiller as well, rather than by thirst.
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From:pinkdormouse
Date:November 29th, 2009 06:14 pm (UTC)
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That option should be available from an ethical point of view (in my opinion). I just wish it was possible to have a sane public debate about it in this country that would lead to the relevant legal changes.

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