Monday, March 21, 2005

When The Decision To Remove The Tube Belongs To Somebody Else

My brain-damaged brother lived with us for a lot of years. I still see him a lot, and I worry a lot, as he gets older, about his decline. I am especially worried about what is going to happen to him once he goes blind, which, although not imminent, is a good bet.

My parents are still alive, but I hope we all live natural lives so that my parents don't have to be in the horrible position that the Schindlers are in now.

My brother is obviously not, and never has been, in a position to articulate his views on the subject, or to write out a living will, as the requirements of such a writing may change from time to time. It is impossible to know what he wants or what he is thinking --- beyond his reciting lists of foods and colors and television shows from the 60s. Anybody who thinks they understand what my brother thinks is just arrogant.

He has a nice quality of life this year. Three years ago, while he was losing the sight out of one eye, it was pretty brutal. All lives are like that, but as we get older and sicker, the bad days outnumber the good. The point at which we believe it is not worth it, of course, varies from person to person.

My brother lives in a facility that is "privately run" but heavily regulated by the State of New York. No family member will ever be able to make a decision regarding extraordinary measures for my brother without the involvement of either a New York State judge or a Senator from Tennessee. Senators are the kinds of people who will forum-shop for a Judge to keep someone else's daughter alive, but who, when the time comes, always find a way to get their mothers to Texas.

When my brother's time comes however, be it next month or, hopefully, a long, long time from now, I hope that everyone will have the freedom to judge the matter based on what is best for my brother, best for our family, best for the group home, best for the State, and best for the cosmos. I hope we have the freedom to give each of these factors their proper weight.

In my mind, what is happening this weekend shows that we are looking at the issue from the wrong end of the telescope. When we assess what people want for themselves, we assume that everyone conducts their personal lives as if they were out of Hobbes, as if they were laissez-faire capitalists. We are assuming that everyone wants to live, no matter what the cost, in money or time, no matter who and what they destroy around them.

I don't think that people are like that.

And at the core of the issue -- I don't believe that God wants us to be that selfish.