When it comes to a person’s quality of life, there are no absolutes.

A few years ago, I wrote a controversial essay that was published in the Chicago Tribune about a mother who killed her sons, both of whom were in the last stages of Huntington’s disease. My position was that Carol Carr saved her sons from a fate worse than death. So debilitated were her sons that they could not defend themselves against a system where there was no legal or medical recourse to spare them the pain and suffering of keeping them alive.

My commentary sparked a protest in the Tribune lobby by people who felt I was endorsing euthanasia. But I based my opinion on seeing a family member go through what is blithely termed a “vegetative state” and die by the minutes over the course of many years. My purpose was to take the argument out of the absolute terms of “right to life” as well as “mercy killing” arguments.

Everyone has the unquestioned right and duty to define their existence and live as they want. But when a person can no longer make their final wishes known, the medical and legal establishment most often works against them. We have established laws preventing criminals from suffering “cruel and unusual punishment,” but in such cases as the Carr’s sons, and now Terri Schiavo, medicine and law override very intimate and personally profound ethics.

Like Schiavo, my sister Barbara was also placed on a feeding tube. It was our family’s understanding that it would be temporary. From the start I always felt my sister would consider being on a feeding tube an extreme measure to stay alive. Even though she suffered paralysis for more than a decade on the right side of her body, she still was able to pull the tube out of her stomach the first time we were alone together.

The message was clear: she was telling me she rejected this measure. It was a dramatic moment, and I wasn’t able to handle it and do my duty as a loving brother. I was a coward. My overriding thought, which I expressed to her, was that I would be held responsible. I further emotionally blackmailed her by saying it would kill my parents to find her like that. My parents were heroic in protecting my sister’s life. I respected their decisions wholeheartedly.

But I regret my decisions now. My sister persevered for years, losing every shred of human dignity, progressively deteriorating without being able to express her will.
Just take the feeding tube.

Over a seven-year period, she had to have it replaced a dozen times. Most days she vomited from it, and it frequently caused her acute abdominal bloating and pain. At the end of her life, she stared at it for hours on end. I think now it was because it became her whole life.

Torture devices were outlawed centuries ago, but with medicine’s ability to keep us alive, we have a virtual stockade supported by the law.

Certainly, the wishes of Schiavo’s parents should be respected. They are bravely committed to thier daughter’s welfare. But what Michael Schiavo knew to be his wife’s wishes must be given equal, if not more, legal weight. It is legally established that a spouse is morally and legally responsible for such decisions. This couple’s mistake was not to have it clearly in writing.

My lover, Jack, died this fall after a three-year battle with liver cancer. We had discussed these issues, and when I was in the hospital with him those final days, I realized even though I knew what he wanted, the system could have kicked in and he could have been kept alive artificially.
Since we had no legal standing as a gay couple, my advocacy for his care and how he wanted to die could have been ignored. Fortunately, it was not.

It means everything to me now that we were spared the public scrutiny or the legal and moral judgment of a most private matter. At such times, things don’t fit neatly into the prevailing medical, social, legal or religious debates. It is clear to me, though, that in cases like the Carr’s and Terri Schiavo, it is the arrogance of others to expect someone to live a life of pain and confinement without the possibility of parole.

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