05/18/2006 08:49 am ET Updated May 25, 2011

Schiavo: The Final Word

May 14, 2006

Dear Son:

Congratulations on receiving your First Holy Communion today. Your mother and I are extremely proud of this achievement. It brought a tear to my eye to stand with you as you accepted the Sacrament, and it was obvious to your mother and me that you have taken your religious education very seriously.

I saved you a copy of the church bulletin that was distributed at Mass today as a keepsake, and I am writing you this letter in the hope that you will keep it attached to the bulletin as a note of explanation. You see, my name appears in an insert to the church bulletin that was distributed throughout the Archdiocese on the very day you received First Holy Communion, and not in a favorable light.

The situation caught me by surprise and it was unsettling to sit in a pew at church as we prepared for your special moment, only to look at the flier and see my name under the banner of a group called Pro Life Union Inc. They mentioned me by name in the context of a story about a recent symposium that I moderated at the University of Pennsylvania. It is certainly true that at the invitation of the nation's foremost bio-ethicist, Arthur Caplan, I participated and posed questions to individuals with expertise on the subject of death and dying. Untrue was the assertion in the bulletin that I was at Penn to somehow "celebrate" the death of a woman named Terri Schiavo. I found that characterization to be deeply offensive, and while I refused to allow it to mar your day, it nevertheless warrants an explanation for your future reference.

Terri Schiavo was a woman who collapsed without warning in 1990, when she was 26. She never recovered. Her husband, Michael, discovered her at their home in the early morning hours after hearing a "thud". Terri was later diagnosed by doctors to be in something called a persistent vegetative state. Two years after the event, Michael successfully asserted a medical malpractice action against Terri's doctors for failing to diagnose an underlying eating and nutritional disorder which led to her cardiac arrest and caused irreversible brain damage. Interestingly, while the jury made financial awards in a number of areas (medical expenses, lost earnings, loss of consortium), they awarded nothing for Terri's pain and suffering. In other words, after hearing the evidence just two years after the tragedy, the jury concluded that Terri was then feeling no pain and was not suffering.

Soon afterwards, there arose an ugly battle between Michael and Terri's parents, the Schindlers. The presiding judge for this dispute concluded that it was a dispute about money from the malpractice action. This dispute soon morphed into a battle over Terri's end-of-life wishes, given that she could no longer speak for herself. On this important issue, there was a factual dispute between Michael and the Schindlers.

In this country we live by the rule of law, and in the case of Terri Schiavo, a court listened to evidence for five days and made a factual determination that Terri's wish was to discontinue her feeding tube. The appellate court process was tested repeatedly and upheld that view.

Things got very ugly. Many outsiders to the case attempted to affect the outcome. One of those interests was the pro life community, which embraced Terri's parents and voiced opposition to the view that her feeding tube be continued. My own position was one of support for the right of the individual in a catastrophic condition to have their own wishes fulfilled. I regarded Terri's case as one involving the right of a person to die on their own terms in the event of a tragedy of this magnitude. In that regard, I believed that the affected person should make the decision free of any outside involvement, including my own, and that of the government. In the Schiavo case, the judicial system determined that Terri's wish was to discontinue her feeding tube. That was unsatisfactory for some observers. Among the upset interests was the pro-life community. (Frankly, I never looked at Terri's case in the conventional pro-life vs. pro-choice terms. But now I began to wonder whether their agenda was to support "life" even in a situation where a person in a permanent vegetative condition would themselves want otherwise.)

Terri Schiavo left this earth in 2005. An autopsy showed beyond any question that she was in a permanent vegetative state, had been for many years, and that the cause of her death was brain damage due to anoxic brain injury. An inquiry by the Florida state attorney found a complete absence of any evidence that Terri's initial collapse was caused by anyone's criminal actions.

I wish my name -- your name -- did not appear in the church bulletin on the day of your First Holy Communion. I love our church and the fulfillment it has provided each member of our family in our relationship with Jesus Christ. But I am your father first, and I am not about to let this moment pass without providing you with some frame of reference for how your dad views the controversy, even though I recognize it will be inappropriate for you to read this for a number of years.

Let no one tell you that your father celebrated any death. Your old man is supportive of self determination. In the case of Terri Schiavo, I kept saying 'there but for the grace of God go I'. If that outcome should come my way, I certainly don't want some individual, or some group, be they pro-life or pro-choice, imposing their view of end of life issues upon me, or anyone else. The fact that one such group would proclaim, in a church bulletin on the day of your First Holy Communion, that I have celebrated death by my support of Terri Schiavo's right to determine her own fate, tells me all that I need to know about this group's lack of respect for individual rights in such cases. They wanted to call this shot for Terri. Well, please don't ever let them decide for me.