Tuesday, April 05, 2005

I wasn't plan to write any more about Terri Schiavo, but

I'm actually taking a little break for lunch and came across this from Ampersand [emphasis added]:
From Harriet McBryde Johnson’s Slate article
There is a genuine dispute as to what Ms. Schiavo believed and expressed about life with severe disability before she herself became incapacitated; certainly, she never stated her preferences in an advance directive like a living will. If we assume that Ms. Schiavo is aware and conscious, it is possible that, like most people who live with severe disability for as long as she has, she has abandoned her preconceived fears of the life she is now living. We have no idea whether she wishes to be bound by things she might have said when she was living a very different life. If we assume she is unaware and unconscious, we can’t justify her death as her preference. She has no preference.

I think Johnson has a good point regarding changing preferences. However, if we accept that point, then why does it make a difference whether or not someone leaves a living will? If someone who is not yet disabled lacks the information needed to make an informed choice about life while disabled - and it seems to me that is probably true - then they don’t magically become more informed if they leave their wishes in the form of a living will, rather than in the form of talking to their spouses and loved ones.

I, too, agree that people tend to have some preconceived notions about how devastated a new disability will be for them in the long run, and how well they would (or would not) be able to adapt to their new state and lead what they consider a worthwhile life. Many people assume their lives are "over" when they, for example, become a quadraplegic or paraplegic. People in those situations eventually do come to accept their new situation and lead full and productive lives.

When I was in grad school, I took a counseling course (just in case I changed my mind and went into genetic counseling) in which my Professor arranged to have to people who'd been through lifechanging events speak with us. One such person was a man who'd had a significant C-spine injury after taking a drunken header into the shallow end of a pool. He told us about the stages of anger and frustration he went through, including a preference he'd died, and then how he finally progressed to making the best out of his situation and how he was now leading a fulfilling life. [When asked if he could find anything positive about being confined in his current condition, he replied "I get
great parking"]

Based on stories like this, I'm sure that most people in a situation that involves loss of a sense or ability to ambulate and/or loss of a limb do eventually adapt and lead the productive and fulfilling lives they'd previously thought impossible. This being said, there's a huge difference between losing the ability to do certain things through disability while still being a functional human being with the ability to interact with others and the situation Terri Schiavo was in. This is one of the reasons I was so suprised to read the extreme reactions from many in the in disabled (?handicapable?) community had to those who support removal of life support in the situation of PSV.

For the sake of argument, let's work on the assumption that Terri Schiavo, while unable to communicate & having no functional control of her body (other than autonomic responses), was actually aware of her condition and situation. Yes, her family surrounded her and told her they loved her, but she was incapable of communicating or interacting with them. She had no functional capabilities whatsoever. Isn't it possible that she spent a large period of time terrified (if she'd been aware, I'd expect she'd have been extremely hyperdynamic from a medical standpoint)? Isn't it also possible that she mentally pleaded for death on a constant basis? She did not interact to them and yet they believed they were interacting with her (they acted towards her, received comfort in these activities, but did not interact with her as she was incapable of communicating with them).

I don't know about you, but the thought of being in that situation absolutely terrifes me. When people ask me if I would fear death if there's no G-d, Heaven, Hell or reincarnation, I usually reply that what terrifies me most would be being dead, lying in my grave and yet having a "soul" that was aware but incapable of interacting with others or physically doing anything. Losing certain limited physical capabilities or even losing some level of cognition that negatively impacted my mental abilities (while allowing me to interact with others, not just allow others to think they're interacting with me) are handicaps that could be adapted to and/or overcome; losing all but being aware is surely nothing other than madness inducing and not exactly a combination of factors one could logically expect a human being to adapt to and learn to appreciate. This "disability" goes well beyond the isolation of solitary confinement (which is considered punitive). The Schindlers stated (in their depositions) that Terri's wishes and/or suffering had no impact on their quest to prevent removal of life support. They were willing to keep her body alive in its condition even if she were in excrutiating pain and/or emotionally tormented because her life had meaning to them. In essence, they made it her duty to remain alive under those conditions to bring them joy. If Terri was aware, in horrific emotional pain and (silently) pleading for her family to let her go so her body could complete the dying process and her soul could do whatever they do when one dies (as a Catholic, presumably she believed she'd go to Heaven), wasn't force-feeding her an act of cruelty?

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