Friday, September 08, 2006

A discovery ripe for misinterpretation

Stop the presses, fire the judges, dig up Terri Schiavo, and burn your living will: They've found brain activity in a vegetative patient. It's a great day for real Americans, which means people who like to send youngsters to war and deny children medical care with one hand, whilst championing the full rich lives of cell clusters and the brain-dead with the other.

Being serious for a second: These are very interesting results, seeming to indicate a more profound version of locked-in syndrome that is possible even with extensive damage to higher brain functions. And it gives us a new way to evaluate whether patients are really "brain-dead" (honestly I'm kind of surprised that fMRI isn't a standard test... is it? Shouldn't it be?), and a reminder that we need to. But interpreting this finding to mean that vegetative patients are aware of their surroundings would be a dangerous overstatement. For one thing, we have data from one case here, and the researchers -- in typical science-minded, non-mouth-frothing fashion -- advocate caution in interpreting such scant information:
Both Naccache and Owen emphasize that it is important not to generalize from this single patient to most other vegetative-state patients. "This is unlikely the case for all vegetative patients," Owen said. "It’s such a heterogeneous group; they all have brain injuries of different types."
For another, the results indicate brain response, which is not necessarily equivalent to awareness or consciousness. Unlike, say, Terri Schiavo, it appears that this particular patient (who, incidentally, was in her vegetative state for only five months, a fraction of the time Schiavo was out) had some detectable brain activity. We don't know that this activity was conscious and voluntary. We don't know that it wasn't, either, but again the researchers urge caution:
Using fMRI technology, the researchers noticed activity in the language-processing regions of her brain when words were spoken to her, specifically with sentences containing ambiguous words such as "creek/creak".

These responses are thought to be relatively automatic and have been elicited from other unconscious subjects.
Unsurprisingly, however, if you look at the blogs linking to the Washington Post article, you'll see that people are already hard at work misinterpreting these new findings. Somehow, "one woman's brain responded to stimuli" becomes "people in vegetative states are alive in a very complete sense," or "Terri Schiavo judges should step down," or "never let the pull the plug on you." A few things strike me as bitter, ironic, and slightly repulsive about these misguided responses, at least a few of which seem wilfully ignorant. First, it should be funny (if it weren't so sad) that the people latching on to this brain response as a symbol of total awareness are probably the same ones who believe that there's a "hard problem" of consciousness, that consciousness cannot be explained through brain function alone. They would probably think me a heretic for believing that consciousness can arise from neural activity -- and yet they take any neural activity as a sufficient, not just a necessary, sign of consciousness.

Second, and this is an old and non-specific one, I'm getting so weary of people misunderstanding science and then claiming that their misunderstood version proves that science doesn't know everything. I don't have much else to say about this particularly off-putting move. I just don't live in the same world as these people; they live in worlds of their own creation. I wish we therefore didn't have to share resources and physical space, but there you go.

And third, the most sanctimonious religious folks just seem so terrified of death. Am I really to believe that these people would rather have themselves or their loved ones live with no physical agency, being breathed for and eaten for and evacuated for, so that they could cling to their meagre ability to imagine playing tennis when told to? Rather than go to their heavenly reward? Really? I mean, I guess I can believe that the real caricature Republicans, the rich white guys who should be ashamed of themselves but don't know enough to be so, might want their wives to live that way. As long as the baby equipment still worked, and they got another wife for cleaning. But would they want it for themselves, when the alternative is presumably to get their harp and wings?

Now, that said, if that brain activity implies consciousness and ego identity, then yes, I'd rather be alive than dead. But I don't believe in heaven; I believe in consciousness or not consciousness, and I am in no rush to get to the latter. It just shows that the attempted palliative of Life After Death doesn't work as well as it is supposed to against perhaps the most driving force of human nature: fear of not-being. It reminds me of a line from my favorite play, which I'm going to see tonight:
Ask yourself, if I asked you straight off -- I'm going to stuff you in this box now, would you rather be alive or dead? Naturally, you'd prefer to be alive. Life in a box is better than no life at all. I expect. You'd have a chance at least. You could lie there thinking -- well, at least I'm not dead!
Get used to it, folks, because if the wrong people latch on to this new data, they could fix it so that you get to do nothing but think "at least I'm not dead" for a good long time.

3 Comments:

robin said...

Interesting spin on this story, Jess. When I was reporting stories about neonatal medicine and fetal surgery about 10 or 20 years ago, I had the same concern -- that once scientists were able to save premies as young as 24 weeks gestational age, or were able to think of fetuses as patients who could be operated on, the anti-abortion zealots would pounce. I mean, *I* could see the difference between a 24-week-old fetus born too soon whose parents wanted to do everything possible to keep it alive, and a fetus discovered in the 2nd trimester to be carrying a dreadful genetic disease whose parents chose an abortion -- but could they? For some reason, that battle was never really joined. But those were different times, and it's quite possible that post-Terri Schiavo, the zealots will indeed pounce on this new information about minimal consciousness -- especially since they never were able to understand that the fact that Schiavo's eyes were open and occasionally moving did not mean that her brain was anything but non-responsive.

As for that Rosenkrantz & Guildenstern line about people preferring being alive in a box to being dead in a box -- did you know that in the 19th century, the most common fear was the fear of being buried alive? Apparently it led to all sorts of funeral customs, such as having a little bell installed inside the coffin. Looks like some folks really would rather NOT be alive in a box than dead in a box.

9/10/2006 12:11 PM  
jess said...

Oh, I don't know about that... I think they would just rather be alive out of a box than alive in a box.

9/11/2006 8:39 AM  
Anonymous said...

Hello,

I happen to run across your article in search of some research that would help my father who has been in a locked in state (although mentally with us) for almost 15 months.

I think he would agree, that being alive is better than being dead - even in his condition. He cannot move, eat, swallow...but he can communicate with his eyes and listen and understand our conversation. He can also watch baseball and other sports on TV which he always enjoyed.

I think we under-estimate quality of life - when it is not us laying in the bed hoping that someone doesn't give up on us. It is easy to say I'd rather be dead - until your faced with the decision.

I hope someday, research will discover how to reconnect the pathway that has separated my father from movement. In the meantime - I commend anyone who looks at the totally helpless with more compassion than if their life is not worth anything. Thanks Jess for your posts.

carol haines
Stratford, CT

7/10/2007 9:19 AM  

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