Comments | fierceawakening: Schools Ponder Role As Child Nears Death

fierceawakening

Schools Ponder Role As Child Nears Death

Dec 28, 2007 11:10

from BFP, Bint, MissCripChick, and others:

Schools Ponder Role As Child Nears Death

As the school bus rolled to a stop outside her Lake County home, Beth Jones adjusted the bright yellow document protruding from the pouch of her daughter's wheelchair, making sure it was clearly visible.

In bold letters it warned, "Do Not Resuscitate."

The DNR ( Read more... )

disability, violence against pwd, cp, cerebral palsy

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wrin December 29 2007, 00:15:31 UTC

All I can say is having seen resuscitation first-hand, it's horrifying.

And when you consider it succeeds between 5-10% of the time, when begun IN THE HOSPITAL, things get clearer. Especially when you know the odds of successful resuscitation are even lower when begun in the community.

Then there's the after-recovery -- which, for this girl, would likely result in tracheostomy and months in hospital and a difficult wean from the ventilator, something her mother's probably had to watch already -- which is horrifying on its own.

I don't know I'd want it done to myself, as a reasonably healthy human being. For a little girl whose best pleasure is school... when a DNR guarantees months in a hospital, being poked with needles, away from school, IF she survives the initial, bloody, bone-breaking rescue efforts...

... I can see where DNRs like that come from.

nightengalesknd December 29 2007, 01:37:57 UTC

Just peeked over at your journal.

I'm a pediatrics resident when I'm not being a person with a disability. Actually I try to do both at once with varying degrees of success!

Anyway if you wanna talk med school as a non-trad aged grad or medicine in general, let me know. I love finding other medical people in LJ-land!

wrin December 29 2007, 07:09:03 UTC

I'd love this.

nightengalesknd December 29 2007, 07:25:05 UTC

I've added you. Large hunks of my LJ are about med school. In theory large hunks should start being about residency but I've been a little busy and a little tired. . . the NICU swallowed me whole.

Am I reading correctly that you're an RT? I didn't know much about the field until I got to the NICU and had a couple of RTs get me and the babies through the night a few times.

wrin December 29 2007, 19:24:42 UTC

Yes, you're reading correctly. I'm an RT who works in rotations through ICU and Emergency and I do a stint doing NRP-style resuscitation in labor and delivery, though my hospital does not have an NICU or ICN per se, so my level of immersion with ze sick bebes is limited to the ten or so weeks I did in school.

luckynumbah7 December 29 2007, 06:05:55 UTC

Your reiterations of "It's a horrifying procedure to watch, messy messy messy" and "The odds are bad, so why bother" seems to equal "Let's not try, little to no good can come of it." (which is the content I get from your post) It strikes me as a bit asshole-ish. Those aren't reasonings, they're scary excuses. A reasoning would be "The procedure brings her more pain in life than pleasure, the imbalance is too great", and I didn't see the girl conveying that. Big surprise, as the article was horribly done, not exactly humane, and chock full of control issues. There's other things I don't like about your post. Quite a few, actually, it's hard to separate the many levels of dislike for it. I had four paragraphs before I gave up and just stated those above, but there seems to be a lot of assumptions about joy and happiness not being able to coincide with disability in there, (or even that she has other likes and dislikes. When was the last time someone whittled you down to "She likes ---" and everyone else left it at that, I wonder? You ( ... )

wrin December 29 2007, 07:05:28 UTC

The credo of physicians begins with "first, do no harm." If little or no good can come of it, it's unethical to begin ( ... )

luckynumbah7 December 29 2007, 22:22:52 UTC

The thing about opinions is everyone has one, but only some people are considered to have valid ones. The others, why, they don't exist, they're normally not even asked. And if they're heard, they're normally soundly ignored ( ... )

wrin December 29 2007, 23:03:51 UTC

On second thought, I'm not interested in continuing this.

fierceawakening December 29 2007, 23:38:45 UTC

Yes. Why is death so "understandable"? That's the thing that hangs me up on stuff like this. Death is supposed to be peaceful, cool, nice.

If I say "fuck nice," why is it assumed others wouldn't?

I don't consider the alternative, multiple instances of asphyxiation, and that's what it would be, however many ways it's cut with people helping, many times, because according to the article it keeps happening, while people watch waiting for possible death any more humane than the many times you say she'd be resucitated

YEAH THAT

fierceawakening December 29 2007, 23:43:17 UTC

"The question is, is she getting more pleasure out of life than pain"

Even that, I think, is so totally the wrong question. It unnerves me greatly.

Utilitarian calculus can be helpful, I think, for sweeping policy decisions affecting groups. It sucks for evaluating lives. It just *doesn't work* for evaluating lives.

fierceawakening December 29 2007, 23:44:17 UTC

which is part of, I think, where all this comes from: a notion of a pleasant life that doesn't actually parse, but offers people a way to decide for PWD what a worthy life is.

luckynumbah7 December 30 2007, 01:26:18 UTC

The 'more pleasure than pain' wasn't meant to be an evaluation of anothers' life, it was a question physicians are supposed to ask people so proper treatment can be made, that was why I stressed getting the child's decision. It's an individual thing, something that needs to be determined by the person something is being happened to. I don't agree with the every-person yardstick definition of 'pleasant' and I won't be jumping on that board any time soon as I've still little clue what makes the particulars of it up for anyone but myself. I don't know what other words to use for what I mean besides pleasure/pain, though, it's the closest word that encompasses what I'm thinking of. Want-of-Life might be better than more-pleasure-than-pain, but something makes up the want-of-life, and since people were focusing on what they thought their own pleasure might be in that situation, I thought it a good idea to have them ask the child's since it's hers that matters.

lisaquestions December 30 2007, 00:07:46 UTC

This also reminds me of parents who murder their children with disabilities, and who get light sentences or none at all, and receive sympathy from the press and the community because it's so darned hard to take care of children with additional needs, and the system needs to support them more.

And this, like those, feels like the parents' needs are being placed entirely above the child's needs, to the point that the child's life is seen as less valuable than assumed peace of mind.

fierceawakening December 30 2007, 00:09:07 UTC

yes yes yes yes yes.

when someone kills yOU it's murder

when someone kills us it's mercy

belledame222 December 30 2007, 03:47:06 UTC

>>The thing about opinions is everyone has one, but only some people are considered to have valid ones. The others, why, they don't exist, they're normally not even asked. And if they're heard, they're normally soundly ignored ( ... )

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