No miracle as brain-damaged patient proved unable to communicate

[panzerfaust]

Source: Guardian (UK)

It seemed to be a medical miracle: the car crash victim assumed for 23 years to be in a coma who was suddenly found to be conscious and able to communicate by tapping on a computer.

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.

"We did not have all the facts before," he said. "To me, it's enough to say that this method doesn't work." ...

Read more: http://www.guardian.co.uk/world/2010/feb/19/miracle-patient-facilitated-communication

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Sadly, this was the anticipated outcome.

[JI7]

1. i'm not sure it is so sad

i think it would suck to be in a state where you are aware but can't communicate in any way .

[pattmarty]

2. For an excellent movie on just this topic, see "Johnny got his gun".......

......It's an older movie 1980 or so with one of the Bottom bros starring.

[AzNick]

17. The Diving Bell and the Butterfly is another great movie on the topic

Based on a true story, where a locked-in syndrome patient can communicate by blinking one eye.

[DesertDiamond]

20. O! M! G! I just started watching that movie last night!!! Sorry I waited so long!

[Faygo Kid]

18. Agreed. Just as well.

To be trapped like that? I would rather die, quite frankly.

[Blandocyte]

3. These stories are also rough

for those of us who had parents whose living wills instructed us to let them go in case of massive brain injury from stroke renderng them comatose and unable to communicate.

No matter how many years go by after having had to follow Mom's instructions, these stories make me ask, "well, maybe there would have been hope of communication or quality of life?" but then the story is usually debunked.

Someday I hope to let it go knowing that we did the right thing by following the advance medical directive, and given the technology available in the early 2000s, there were no other realistic options.

Mostly I remember all the lies the religious right spewed during the Schiavo case and believe that most of these miracle stories are very rare or later debunked.

[jmowreader]

4. The especially bad thing about the Schiavo case? WHEN the RR got involved

I remember them not really caring about this case until Michael decided she'd suffered long enough. THEN they start freaking out...look! We've got a film of her reading the Gettysburg Address! (Never mind the fact we had to cut it together from three thousand hours of video tape--"that grunt sounds kinda like the front half of "four" doesn't it?") She's just as lucid as you or I! Well, lucid as YOU perhaps, but the oxygen deprivation and self-imposed lack of food caused her brain to fucking dissolve; there was no saving this woman, and they knew it.

[Zoeisright]

9. Yep, you can always count on a repuke to make a bad situation worse.

They're incredibly nosy, cruel, and stupid.

[rox63]

5. I'm with you there...

We had to let my Dad go after a massive stroke in the late 90's. He was very firm that he didn't want to live in that sort of state, and we followed his wishes. The was a major bleed in the brain stem, which deprived the rest of his brain of blood for long enough to cause a lot of damage. All these years later, it still makes me :cry:

[Bigmack]

7. Wait... you did exactly what your dad wanted...

You did what he wanted when he couldn't. It was your last gift to him.

My Advance Directive is really tough, but I have made it clear to my kids that I want quality of life over a life barely hanging on in a diminished capacity.

You did good.

[rox63]

16. I know that intellectually

But it still makes me sad. After a lifetime of alcoholism, he had just gotten sober 2 years earlier. The family was finally repairing their long-tattered relationships, and then this happened. I was there when he breathed his last, and it was very difficult to watch.

[No Elephants]

22. As a mom, I can tell you without hesitation that you did do the right thing by your mom--

you did as she asked. As a mom, I can also tell you that my end of life instructions are guided by what would be easiest on my son. Would I want him visiting me for years without knowing if I will ever wake up or communicate? No. Even if, by some miracle, that might happen after 10 or 20 or 30 years, I would not want him going through that anyway.

As for me, even if there may have been some hope of communication after many years of being "locked in," there still would have been all those years of torture while locked in. I would not want to suffer those on the off chance that they might end some year or another. Or not.

Finally, even if, by some chance, my son did make a mistake of that nature, I would rather be dead anyway than have my son torturing himself for the rest of his life over whether he made the correct decision.

I am sure that, above all, that would be your mom's wish, too, that you not torture yourself over following instructions that she asked you to follow.

Please, please release this and be at peace.

[Hekate]

23. If it's any consolation, my MIL resolutely refused to discuss her own death,leaving it to her 3 sons

... to try to divine her wishes after her stroke rendered her paralyzed and unable to communicate. Her doctor, not knowing either, but seeing the division among the sons, said he wouldn't let her leave the hospital without a feeding tube, and that he wanted her to go straight to a nursing home. She was 94.

Okay, so the feeding tube went in, but at least everyone agreed that she would have had hysterics over the nursing home idea (if she were conscious of it, that is). The upshot was that the son who had been living with her ended up being her caregiver, and my hubby ended up arranging for nursing students and the Visiting Nurses Assoc. to come in as well.

The poor woman lingered for 18 months, needing more care than a baby -- at least babies don't need an enema to move their bowels or a catheter to void their bladders. She could breathe on her own, and that was about it. The only good thing I can say about it is that she was cared for by familiar hands and had familiar voices around her. I *hope* she was not conscious of her situation.

She passed away in her sleep just a year ago -- and it was a blessing by then.

This past week my husband started writing his own Advance Directive. We've discussed the issues so many times that when I read what he had written -- and he put it beautifully -- I said that I would like to sign it as well, as he had captured my thoughts too.

For us, if there's no hope of meaningful recovery just let us go. No feeding tubes. No breathing tubes. If comatose from a car accident, take the doctor's advice on how long to wait before giving up and pulling the plug: immediately? a week? a month? -- for the sake of human mercy, not as long as a year, much less these nightmarish cases of 20+ years. (I do have a friend who was in a coma for 2 months and recovered, but she was in her 20s at the time.)

Life is fatal, as my late mother used to say; none of us get out alive. So what I say is, we live while we live as fully as we are able, and love those we love as much as we can.

I know you miss your Mom, but I hope in time you can be at peace with her decision. She knew her own mind when she wrote out what she wanted at the end of life. Perhaps some night she will "visit" you in a dream, and you will know she's all right. :hug:

Hekate

[western mass]

6. As shown time and time again, facilitated communication is fraud

It's sad that people still give these scam artists the opportunity to prey on the desperation of grieving friends and family. They're no different than psychics who "help police" in murder investigations.

[friendly_iconoclast]

27. Very true, and do you know what the giveaway is?

The 'tell' comes when the "facilitator" doesn't know the answer to a question asked, or cannot see what the person who is
"communicating" is asked about. Then FC fails. Every time.

This has been demonstrated more than once.

[LisaL]

8. Well dah.

It was obvious to me at the time it was reported. What amazes me are all those news reports on him communicating, not even questioning it. As I recall, they even reported he was going to write a book about his experiences. Some book that was going to be.

[Snazzy]

10. Results 1 - 10 of about 2,720,000 for "Rom Houben"

Seems like there's a bit of facilitated retracting to be done...

[brentspeak]

11. What about the man's "helper"?

Hopefully, she gets the boot without any further ado.

[Odin2005]

12. And here comes the idiots claiming that just because some FC people are frauds...

...must mean all of them are frauds, which is blatantly false. There are many cases of a person progressing from FC to using a talker. One of them is a good friend of KamaAina.

[KamaAina]

25. Correct-a-mundo!

Before FC, then augmented communication, her IQ was thought to be 10.

Afterwards, she went on to college, graduating from the University of Denver (known as DU!). She even met President Clinton, which is more than I can say. Most recently she has been appointed to a prestigious interagency committee on autism.

Oh yes, she is also attractive enough that I sometimes find myself wondering what it would be like to have someone type sweet nothings into a keyboard... :loveya: ... and if you're lurking, please get well!

[Odin2005]

26. +1

:yourock:

[greiner3]

13. And if Rom had been hospitalized in Texas;

perry would have ordered the plug pulled. Karma is nasty sometimes.

[MadMaddie]

14. Especially if the money wasn't available to pay the bills

[pitohui]

15. many people pointed out at the time that this was a fraud

my husband's college friend was, when we last lost contact with him, kept "alive" in a permanent vegetative state for over a decade, and may still be in that state, for all we know

when the brain is gone, the humanity is gone, and to keep the body alive just to profit hospitals and create "jobs" milking the family, the insurer, and eventually medicaid for $$$ is one of the most evil cruelties going

brain dead people are dead, they're fucking dead, and these hoaxers are knowingly perpetrating cruelty because it profits them (either they're selling bullshit religion for profit or they're selling bullshit medical services to the dead for profit)

a dead person makes a very untroublesome patient, i suppose

the medical people involved in such cruelty should get real jobs, the religionists should be in prison for fraud -- their cruelty simply enrages me

[unc70]

19. Clever Hans effect

Not to diminish some valid research monitoring brain waves.

[woo me with science]

21. Gee, what a surprise

this isn't.

[Codeine]

24. From today's No Shit! file. nt

[boppers]

28. Release data early, become a mockery.

I feel bad for Laureys, but at least he bothered to check his work eventually... the changed test was super simple: Show the patient an object when the facilitator isn't in the room, and then bring the facilitator in and inquire about the object.