March 2005

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The Terri Schiavo case has, if nothing else, made people aware once again of the need to make known their own wishes for healthcare. To make the obvious statement, it is particularly difficult to make life-or-death decisions regarding someone else. I was in that position more than once regarding my mother's life, and all I was willing to say then about the decisions I made is the same thing I'm willing to say now: I made decisions that I thought would best honor her wishes, using all the available information.

I personally have very, very mixed feelings about the Schiavo case. I have real problems with the notion of taking away feeding tubes. That is my personal squick, and if no one else reading this entry feels the same way, that's fine. I would find it much, much less problematic to remove a definitely dying, already unconscious person from a ventilator.

And I found it not problematic at all, in moral terms, to fail to start a new course of treatment when my mother developed the fungal pneumonia that killed her. The question in that instance was whether to start a treatment that was virtually guaranteed to destroy her kidneys, or to let the pneumonia run its course, knowing that the likely outcome would be her death.

The single hardest thing I have ever done in my life was leave that conference and go into her room and tell her what I had decided. I know she understood me. I told her that if she thought it was the wrong decision, she must use whatever method she chose to let me know. She had ways, mainly facial expressions, of letting me know exactly what she thought, and I trusted myself to understand. She never made indication that she wanted the treatment. She never looked scared or angry. I was as sure as I could be that her choice would have been the same one.

In vivid contrast to that day is the day five weeks or so earlier, at another hospital. That day, a first-year resident came into Mother's room and told me that it was up to me whether or not to disconnect the ventilator. Her tone of voice pretty much told me she expected me to reach over and pull the plug that minute. She thought Mother was unconscious. She was wrong. I could see Mother beginning to get very disturbed.

I told her flatly that we would not continue the discussion in the room, and that we were going to the hallway now. We did, I asked for a full rundown of what would happen if the ventilator were removed. The answer was what I thought, that Mother would die. Since not enough tests had been done to give a prognosis in Mother's case, I thought making such a decision was extremely premature, and I said so.

I then walked back in the room, sans the resident, and told Mother that I had decided not to disconnect anything. I saw the pure relief cross my mother's face. I knew I had made the right choice.

Two instances, two choices. Both made utilizing the available information, and doing my best to honor my mother.

I have a great deal of sympathy for those on both sides of the Schiavo case. I have a great deal of sympathy for Terri Schiavo herself. And I hope, whatever the outcome, all involved can find peace.