And the removal of Ms. Schiavo's feeding tube has been pushed to the 18th.

[conuly]

Here.

Before people start debating this, let's get the following out of the way:
She doesn't use a ventilator.
She's not "hooked up to a machine" to live.
She isn't on life support, at least not as it's been defined to me.
She uses a feeding tube to eat. Removing this would cause her to starve to death/dehydrate.
Her parents say that she's minimally aware.
Her husband disagrees, and says that she didn't want to live like this.
He is living with another woman.
AFAIK, nothing from the insurance went to cover therapy for her.
It is argued that this therapy could've improved her condition.


Now you can go duke it out in my journal.

Comments

[wakasplat.livejournal.com]

Do you, personally, draw a line? Is there a point where life ceases to be life and simply becomes existance?

No, I don't draw a line.

I have a horror of this kind of thing because I'm aware that it could happen any day to any one. There's no such thing as being a "good person" and making some kind of bargain with fate so that "it can never happen to me." There is no moral judgement made about who'll be disabled and who won't be; it's something that happens to good people, bad people, careful people, reckless people ...

That much, I'm quite aware of, having been born disabled.

There's likewise no predestined coin-toss making one person disabled but able to communicate and act and live and making another person a living body.

I've lived out some fair chunks of time while unable to meaningfully communicate with other people, and/or unable to move at all, and/or able to move but not able to meaningfully direct my actions. (I'm autistic and on top of that I have a movement disorder that includes catatonia.) In fact I've had a member of an emergency medical team, unfamiliar with catatonia, state in front of me that I was probably dead. I've also spent good chunks of time tied to beds while listening to other people discuss why my life isn't a real life and referred to as just taking up space when they could actually be helping other people (some of those people later tried to kill me), experienced 20 years of severe pain with no pain management (because I'd never learned to communicate about pain), and basically lived a lot of other people's nightmares.

Which is actually why I become so adamant about not drawing lines. I know what the price can be, and I wouldn't be here if it weren't for people who refused to draw lines where others did draw them. I also know too many other people who've been on the wrong side of the line (and have talked to a few who were declared PVS while they could hear it), or are still sometimes declared on the wrong side of the line, as well as people who have been pressured into signing DNR orders. None of us would be here if the lines were allowed to be drawn.

My wishes are out in a fairly painstaking degree of detail too. I have a notarized official document stating that euthanasia must never be used, I have appointed agents, one of whom has worked for Not Dead Yet, who have been instructed that I am to be kept alive even in the event of diagnosis of persistent vegetative state or even minimal brain stem function (and that they are not ever to take doctors' word for it that I'm not "really" alive). I've also given them instructions that I be kept out of a nursing home or other institution and that I need people to be there and interact with me or play tapes for me in case I am conscious and bored out of my skull (because actually boredom in institutions was worse than a lot of the physical abuse, and is one of the worst parts I remember about being written off).

I am not inexperienced with nursing homes (I've volunteered in them and my mother worked in them), or other institutions (lived in them), which is why I am doing everything in my power not to live in one. However, even if I did have to live in one, my primary objective would be to get out of one alive, not to die.

And having experienced extremes of inability to control my body or engage in two-way communication, that actually doesn't scare me much. It scares me much less than it scares most people. What I would dislike if I ended up staying that way for a long time again, is if people were to assume that this was not living a life just because it was an extremely different from their lives, or if they were to remove all stimulation from my environment and plonk me somewhere and forget about me. Which is why I have such detailed wishes around that kind of thing: I'd want to be moved around to the largest extent possible, and have people interact with me probably a lot more than I like interaction now because I'd have less ability to find my own things to do.

The trouble is that hospital ethics committees and such will and do still try to override this sort of wish sometimes, if in their prejudiced imaginings lack of movement is lack of life.