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03/22/2005: "My own selfishness"

The Terri Schiavo case has had me thinking quite a bit and I realized today that I have been incredibly selfish. You see I have a Living Will and Medical Power of Attorney that spells out my wishes but I never thought to take anyone else's into consideration just mine as if my life and death would only affect me.

My Medical Power of Attorney names my husband and my best friend who is also a nurse jointly. I didn't want my husband to be placed in a position of not understanding the medical jargon and having to trust doctors he may not even know. I wanted someone who knew what questions to ask, spoke the language, knew bullshit when she heard it, and wasn't afraid to challenge a doctor deity as most lay people are, to help him through what I know would be a heart wrenching time for him.

I know this would be heart wrenching for him and my whole family because I have been there, done that, and all I have is the lousy tee shirt. Twenty five years ago, my daughter Laura died after I authorized removing her respirator. For twenty five years, I have wondered if I did the right thing. Did I give up on her too soon? Did they make a mistake? Was there really no hope for her? What if some new miracle cure is announced tomorrow? Did I make the right choice? I will never know. But I am acutely aware of the gut wrenching pain that has never faded in twenty five years and doubts that haunt me to this day.

This doubt was the initial catalyst in making sure that I executed a Living Will and never put anyone in the position of having to guess what I may have wanted or wonder what the best course of action would be. I would leave no doubt. But what if my parents, siblings, or children aren't ready to give up or disagree with the decision? What position have I placed my poor husband in? What if my husband disagrees with my wishes? Should he have to chose between what he thinks is best and a sense of obligation to uphold my wishes?

I am thinking of amending my Living Will to say that here are my wishes but if any member of my immediate family (parents, siblings, husband, or children) object or have reservations and they wish to and have the means to take over the financial burden of caring for me, then keep me going by whatever means necessary until there is a unanimous consensus among them to terminate any extraordinary life support.

If I am in a vegetative state, I won't know or care if my wishes were being carried out. If I am terminally ill, it won't matter for long anyway.

I would like to go out of this world having not been a burden to those I love but I must let them decide what a burden is. That decision is not up to me.