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'We all agree that life is precious'

But, as the Terri Schiavo case showed, we don't all agree how a life should end. A medical ethics expert talks about what can be learned from the case.

By SUSAN ASCHOFF
Published April 11, 2005

In the calm after the storm that was Terri Schiavo's final days, questions remain about how life should end. Dr. Kenneth W. Goodman is founder and director of the University of Miami Bioethics Program and director of the Florida Bioethics Network, a group of doctors, nurses, social workers and professors wrestling with ethical and legal issues in medical care and research. At the network's annual conference last weekend in Miami Beach, one of the panels was titled, "The Schiavo Case: Unhappy Frontiers in Bioethics and Health Law."

Here Goodman considers what society learned, and failed to learn, when the 41-year-old woman and her warring family became a lens into a national debate.

Those of us who know and love Florida are prepared to endure craziness. We were all surprised (at the level). There was a pretty bright political thread that ran through this. This case couldn't have happened 20 years ago.

What the physicians who I've spoken to have said is there's never been such a disconnect between what we understand medically and the way this case has been pitched to ordinary people. The idea that someone would say courts want to starve someone is preposterous. Papers were saying, "She's gone 10 days without food and water." Wait a minute. She's gone 10 years without food. When the extremists were able to inflame the debate as respect for life, doctors were slack-jawed about the misunderstanding of the medical facts. People have the idea that removing a nutrition tube was somehow like taking away a lunch tray.

One of the things the Florida Bioethics Network and others did in 1999 was work with the Legislature (and hold) town hall meetings across Florida. We made a number of very important changes that govern end of life. The fear (now) is that legislatures are going to make it more difficult for ordinary people to say no to burdensome and unwanted treatment. The fact is, we all agree that life is precious. That doesn't entail that every time you have a drug or an instrument, you have to stick it in a patient.

What is important for ordinary people to understand is that they don't have to accept medical treatment they don't want. You can take away a nutrition tube. (Goodman prefers the term nutrition tube because it is "precise.") They run a tube through your esophagus into your stomach. At the end of the tube is a light, which shows through your belly and that tells surgeons where to cut, so they run a tube through there, then remove the esophagus tube. That is not a feeding tube. Feeding includes food and flavor and swallowing. The fallout from Schiavo is now ordinary people are afraid they'll suffer if they say no to medical treatment. If I don't have any lunch, I might say, "I'm starving." And people say, how do you feel after a week and a half of this (no nutrition tube)? They (life support patients) don't feel it. The idea that a young one should endure a medical treatment out of political correctness is frightening.

Sources of morality are many and diverse. While we all respect the faith tradition's approach to this, there is nothing in the Old Testament, New Testament, Koran, Torah or Bhagavad-Gita about gastrostomy (stomach tube), nothing about genetic testing, nothing about stem cell research, nothing about organ transplantation. Which faith tradition is the legislature going to endorse? We need to make decisions with human reason. We need to apply our critical judgment.

I have the privilege of teaching medical students. They always care for their patients. But there are times when it's inappropriate to try and prolong the dying process. There are some doctors who still measure success by how long their patients live. That is not a good measure. One of the problems with some of the legislation that's been introduced is it would require a level of specificity (in living wills) that's almost impossible. How do you know today what kinds of treatments you'll want or will want to refuse 10 years from now? Picking a surrogate is far more important: Here's what I value. Use your judgment.

She taught us at least two things. One of them is talk to your loved ones about what are your values in life. Secondly, when it comes to legislation, hastiness and vehemence are poor substitutes for deliberation and rational thought. What most people value about life is communication, cognition, interaction with the environment. What we do not value is simply that we're not dead. That's shown repeatedly in surveys of ordinary people. It's my life. I'd rather be able to say, enough's enough. Anyone who's seen a loved one die knows how difficult it is. What they also know is that when extremists and partisans want to intervene, it's among the most grievous insults.

[Last modified April 8, 2005, 12:30:04]