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

[azarias.livejournal.com]

Honestly, I'm a hardliner about this, and it has nothing to do with begrudging disabled people their rights. It has everything to do with where I draw the line on what constitutes a person, and the absolute horror I feel that I could be in her position some day, where I'm kept alive half because people I care about would think that I wanted to be that way and half because other people are trying to make a point.

[conuly]

Have you written your wishes down? As near as I can, she hadn't. The only word we have about her wishes are from her husband - and, let's face it, he's got ulterior motives coming out his ass.

[kibbles.livejournal.com]

It's funny, my husband can parrot my wishes.

"She doesn't want to die, hook her up to every machine, she won't leave without kicking and screaming."

However, in honest heart to heart talks he has the final say and my blessing to make the decision he feels would be best, and I trust he will make the right one. But it's pretty much known in my family (and has been written down) that I DO want intervention. It has to be pretty bleak for them to 'pull the plug' as it were.

[wakasplat.livejournal.com]

Where you draw the line on what constitutes a person has everything to do with begrudging disabled people our rights. Disabled doesn't exclude profoundly disabled, you know. You can't just draw a neat little line down disabled people's lives and say "On this side you're alive and on that side you're not." That's by definition begrudging a certain category of disabled people their rights.

You say below that we're afraid of death. It seems you're afraid of certain kinds of life (at least "horror" that you could be alive in that kind of state seems to sum that up). Maybe we're not afraid of death, but rather being killed because someone who has never lived in that state thinks they can decide that we should die if we enter that state. Being alive is inevitably reversible. Death is not. And I'm tired of the fear of you and other people of being alive in certain states being weighed in the same balance as people's lives. Your emotional state versus people's lives. I think I'd prefer you stayed afraid and she and some people I know who can no more "prove" their awareness than she can stay alive.

And if you're so terrified of living like that, there are already provisions you can use. On the other hand, you may find that you wake up one day severely brain damaged, state in some form that you want to live, and other people overrule this on the basis that you're considered incompetent, vegetative, or having seizures. This has happened to people.

[azarias.livejournal.com]

Do you, personally, draw a line? Is there a point where life ceases to be life and simply becomes existance? 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 ... 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 think that we as a society need to put some serious thought and effort into defining where the collective right of holding life above all ends and the individual right of determining where and when to call an end to life begins. My medical power of attorney is held by a dear friend who has my wishes in detail and in writing -- I know, I sound paranoid about this subject, but I grew up in a family where the customary trade was medical care, especially nursing in long-term treatment facilities, and so vegetative states, DNR orders, and right-to-die politics were a big subject of discussion around the dinner table. I find it wrong that my wishes could, theoretically, be overruled by my family if they tried hard enough, though I doubt they'd do so. I've chosen a friend for this both because I frankly don't get along with my parents and because he met me as an adult, capable of making and understanding my own choices, and not as a child incapable of reasoning that far. I also want my friend to do it because he's willing to donate my organs and my parents are not, and I believe strongly that since I'm not going to be using them once I'm dead, someone else should get a chance.

(Just in case that last bit gets misinterpreted: I'm not saying that everyone else should be an organ donor whether they like it or not, though of course I encourage people to consider becoming one. I personally have no belief in any continuity of the body or the soul somehow reflecting the physical and see no reason to hold on to a heart that isn't keeping me alive but might save someone else.)

[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.

[moggymania.livejournal.com]

"It has everything to do with where I draw the line on what constitutes a person"

I tend to feel that it's not up to others to decide whether a human being is a 'person' or not, especially based on a lack of experience. Doubly so considering that a lot of the time, there's just no way to know what the outcome will be, so assuming 'this can't be a person' makes no sense considering it's not necessarily a static state. (I know at least three people that suffered severe brain injuries and were at the same point Schiavo was, yet with rehab were able to absolutely qualify as what you would call a 'person' -- one became an internationally-respected professor of disability studies.)

"and the absolute horror I feel that I could be in her position some day"

The question is, though, what is horrifying about it? All of the major detractors I'm aware of in that position are socially-engineered rather than inherent, and could thus be altered to *not* be worthy of horror.

"where I'm kept alive half because people I care about would think that I wanted to be that way"

There's an old phrase that fits here really well: you don't know until you've been there. You think right now that you would rather be dead than be in her position, and you *might* be right, but you could also be wrong. Evidence from those that have actually been there shows that once they're in that position, most of the time they *don't* want to die.

"and half because other people are trying to make a point"

Though that's also what you're trying to do -- you evidently would rather she be killed in order to make *your* point.

[azarias.livejournal.com]

The thing is, my point is that she, Terry Shiavo, the living, thinking, being, is, as best we can define, already dead. The body of Terry Shiavo is alive. I don't hold the body so sacred that it should be preserved unoccupied.

You're probably absolutely right that if I'm ever in any similar position, and I have the capacity left to have a preference one way or the other, that I will prefer to live rather than die. What I'm fairly certain of, however, is that I'll prefer being dead to continuing in the state I'm in. Death honestly doesn't scare me. Being scared of being dead is, to me, about like being scared of not being born. It happens, it's inevitable, it's either a state or a nonstate, and either there's something to it or there's nothing at all. Once I'm dead, either I no longer exist, or I get to find out who was right all along. Both of those possibilities are intimidating in their inevitability, but not fearsome. Dying, on the other hand, frankly scares the shit out of me. Still being myself, but slipping away, not being able to do anything about the fact that I'm dying ... my inner coward wants to make it as quick and painless as possible, while my inner control freak wants to have at least some say in the whens and hows of the matter if at all possible.

[conuly]

The thing is, my point is that she, Terry Shiavo, the living, thinking, being, is, as best we can define, already dead.

We don't know that, however. Her family maintains that she responds to them. That, to me, doesn't indicate the same thing you have said. The people saying that, in fact, are hired by her husband - who, as we have seen, has a number of reasons he may wish her dead, many of which do not have to do with her well-being.