Nov 13, 2003

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What we don't know about life and death

Where does the sanctity of life end and where should the expediency of medical termination begin?
By Tom Koch

Terri Schiavlo of Pinellas Park, Florida, now joins a small pantheon of Canadians whose fame rests on their limits, and on the potential of their deaths. Her name is mentioned, these days, with those of British Columbian Sue Rodriguez, the woman with ALS who argued for physician assisted suicide, and Terri Lattimer, the Saskatchewan child killed by her father to save her from a restricted life with cerebral palsy.

That Shivalo lives - and may die - in Florida rather than in British Columbia or Saskatchewan does not make her story less important to Canadians. Her case is ours just as the stories of Rodriguez and the Latimers were a focus of international debate.

The problem with this case - as it is with most - is not our level of knowledge but the limits of our knowing. Is Terri Schiavo in a vegetative state, or is she minimally conscious?

Should her husband's decision to withdraw life-sustaining care trump that of her parents' for her continuance? Would it matter if we in fact knew what she might have wished for herself?

More generally, the Shiavo case asks a simple question that doctors, ethicists, and lawyers are all unable to answer with certainty: When is a restricted life no life at all? Where does the sanctity of life end and where should the expediency of medical termination begin?

Thirteen years ago Terri Shiavo suffered heart failure. Resuscitated, she lost all but the most rudimentary of physical functions. For the last decade she has lived in a hospice centre where feeding has been by a tube. As a result of her injuries, and questions about appropriate diagnosis, her husband won a $1 million medical malpractice suit, monies presumably that have supported her continuing care.

For five years an ugly battle has waged between Mr. Shiavo and his parents-in-law. He insists his wife would prefer death to life in this reduced state. Her parents have insisted their daughter's life is worth saving and that any withdrawal of life support would be wrong, would be murder.

The parents insist, on the basis of reports by their experts, that with time and rehabilitation their daughter could improve. Mr. Shiavo's experts, and those appointed by the court, say no rehabilitation will help. She remains at a state of, at best, minimal sentience.

Florida courts ordered Mrs. Shiavo's feeding stopped in October at the request of her husband. Under that state's laws, a spouse can request an end to care if the wife or husband did not leave a living will dictating his or her wishes. Mr. Shiavo says he is doing what his wife would have wanted.

In late October, Florida Governor Jeb Bush pushed an extraordinary bill through the Florida legislature that reversed state laws granting spouses the right to decide the fate of cognitively limited spouses where a living will is not in place. He then ordered her feeding tube restored.

Thousands for whom Shiavo had become a cáuse celebrè cheered Bush's actions, in Florida and around the world. These included Christian fundamentalists - a strong constituency in Florida - and some disability advocates. At least as many, including many experts in bioethics, medicine and law, believe the governor's action was inappropriate and perhaps illegal. At the least, the question of Bush's legal actions, and the challenges it will engender, will keep the case before the courts, and before the public, for months to come.

What makes the case so riveting, and so important, is the way it shows us what we do not know. Here are a few areas in which the case turns on our ignorance.

Vegetative states
Despite the public assumption that medical experts can define mental states with precision, they cannot. The current state of neurology is such that there is room for disagreement. Those arguing against termination will always point to the exceptional case - the person who was vegetative who awakened. It does happen - some experts say far more frequently than most expect.

Thus those who support Bush's decision say that if there is any chance for their daughter's improvement, her parents for life should take precedence over her husband's decision to withdraw his wife's nutrition and hydration, to starve her to death.

The very idea of a vegetative state is, to some, an odious statement, a pejorative as vile as nigger was to African-Americans and yid was to Jews. They object to any equivalence of a person with a vegetable and see this case as the slippery slope that will lead others to withdraw care from persons with severe restrictions.

“This is just the precipice,” JoAnne Zappala, who lives near the Shiavo home, told a New York Times reporter. “If they pull the plug on this woman, do you then take other disabled people who can't feed themselves? This opens a Pandora's box.”

Others say nonsense. This is about a specific kind of situation, one of minimal brain function and no cognition.

For Canadians, this brings back memories of Robert Latimer's insistence that killing his daughter was the humane choice, that her continuance was no gift at all.

Another question is the course of death by starvation and thirst requested by Shiavo's husband. Some but not all physicians believe withdrawal of nutrition and hydration is a humane course of activity in cases like this. Others insist it isn't that simple and decisions on what a minimally conscious person might feel must be made on a case-by-case basis.

In most cases, however, we proceed from a state of uncertainty. What the body and mind may feel in cases like this is something we do not know.

Finally, the Shiavo case raises the question of living wills, of those statements made in a state of health about what we might want were we faced with serious infirmity. Most will say, reflexively, “I don't want to live like that,” when faced with serious infirmity: paralysis, cognitive limits, etc. Certainly, none of us wish to live in a hospice attached to tubes, we say, for 13 years.

But most studies of persons with severe limits - persons living with ventilatory assistance, for example - show the majority do indeed prefer a restricted life to no life at all. The potentials of a restricted life are ones we in health cannot perceive until we are in that state.

And so the Shivalo case raises, in its way, the question of how we in relative states of health can judge the lives that result from physical and cognitive restriction. And if we cannot judge them, then how can we plan for them?

What almost everyone can agree upon, however, is that they would not want their fragile health to be the source of a messy legal battle between a spouse and one's parents.

There are no easy answers. There are no simple solutions. And that, perhaps, is the real lesson of Shiavo, and of Canadian cases at the far end of restricted life. We do not know what these states mean and we do not know how to deal with them.

For some that means erring on the side of caution, of life. Others insist that is mere sentimentality, and expensive sentiment at that. The importance of the Schiavo case is that the issues will again be trotted out and aired by all as modern society once again tries to define what it means by a life worth living, and what it means by a life not worth living.

Tom Koch (above) is an adjunct professor of gerontology at Simon Fraser University and a bioethicist. His articles and books are listed on his website:

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