Rethinking the Right to Die

I have been trying, without success, to write a piece called "The Right to Die". The piece was going to be about how science and medicine have blurred the lines that nature has drawn between life and death. I was going to opine upon how man, with vainglorious certainty, has circumvented the safety measures nature put into place to ensure the integrity and longevity of our species.

I was going to cite cases like that of Terry Schiavo, Juliana Wetmore, and Johnny Kennedy, and how these cases clearly illustrate that just because we can save or prolong a life does not mean that we should. I was going to denounce the selfishness and cruelty of condemning a person to life of pain and suffering, or vegetative nothingness.

But I'm not going to do that. There are two reasons.

First, my children are happy, healthy and whole. The most pressing medical issue we have had to face is whether or not to have tonsils removed. My husband has never been seriously ill or injured. My parents are still with me, and although my mother has a chronic illness that will eventually take her life, she is not in immediate danger. I have never had to decide whether someone I love should live or die. I have never had to wrestle with the decision to extinguish the life growing within me because it is flawed in some way. I have never faced the prospect of living my own life with a big, aching, empty hole in it.

I like to think I would be strong enough to let them go if their quality of life was so seriously diminished as to be devoid of all dignity and humanity. I like to think that my need to have them with me would not infringe upon my ability to make a sound decision. I like to think I would have the courage to grant them the peace that death would bring.

But if I am completely honest, I have to admit that I, like most of us, would give and do anything for just a little more time with someone I love. I would beg and plead. I would sell everything I own. I would offer my own life, surrender my own dignity. I would prevail upon every medical miracle available. I would even pray. I would promise a God I have doubted and ignored my undying loyalty and devotion if only he would let them live. So I can't, in all good conscience, criticize someone for a choice I would likely make myself, despite the knowledge that it might be the wrong one.

The second reason is a little more difficult to explain.

In gathering my thoughts about this piece, I solicited the opinions of some friends. These friends are mothers, and they have among them, an Autistic child, a premature child, and a child who was born with Spina Bifida. They helped me to see that "Quality of Life" is so highly subjective that it defies measurement and therefore, we cannot simply create a list of qualifications by which we determine the validity of existence. We cannot assign a standard by which to assess its value. And we cannot deny the fact that worth lies in perception, which is as widely varied as human beings themselves.

Who can say why a person is put here and what purpose has been set forth for them? Who gets to say that a life is sufficiently devoid of merit as to justify its termination? Who defines the terms by which we would govern those decisions? Me? You? Doctors, Lawyers? God?

In thinking about all this, I was taken back to my oldest child's infancy. There were several of us in the neighborhood with new babies. All of them looked and acted like any healthy infant should; all except Zach. His hair was flaxen blonde and his eyes were the purest cornflower blue. From the eyebrows down he was the most beautiful child I've ever laid eyes on, and when he had a hat on (which was most of the time) he looked like any other baby. But if one looked a little closer, they would see that his beautiful blue eyes were curiously vacant and that his hat seemed unusually large upon such a tiny little body. But sadly the hat was filled with his head, which was terribly misshapen by Hydrocephalus.

Zach, like my son, was born when prenatal diagnostics were becoming widely used and available. But somehow his condition was not detected until birth and the damage to his poor little brain was catastrophic. It was difficult at such a young age to determine how much awareness he really had, but the doctors felt that beyond feeling basic physical sensations such as cold, wet, hunger, and pain, he had very little sentience. He was completely blind, and would never walk or talk or have control of his bladder and bowels. I felt tremendously sad looking at him, as I contemplated the hopelessness and pointlessness of his existence.

His mother would bring him to our little gal pal group and set his seat among the rest of the babies. As they grew and became mobile they struck out eagerly to explore their surroundings while Zach remained confined to his seat. But curiously, they would return every now and then to bring him a toy, offer him a little pat, and inquire in sweet nonsensical baby babble, if he needed anything. They were taking care of him. They were learning compassion and empathy and acceptance from a child who was scarcely conscious. And I realized then that his existence was not as pointless as I had naively supposed. So he had taught me something as well, and I suspected that he would teach a great deal more before his time on this earth came to an end.

So...I won't talk about the Right to Die. I won't attempt to define Quality of Life. I won't pretend to have the solution to an issue that is largely philosophical. Instead I will simply try to recognize the inherent worth of all who share this plane of existence with us. And if the time ever comes that I need to make a life or death decision, I will try to be strong, but I will forgive myself for being weak.

In the absence of any clear cut answers, I think it's all that we can do.