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After Terri Schiavo

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By TASHA KATES

Media General News Service

Published: July 5, 2009

More than four years after the death of Terri Schiavo, a University of Virginia law professor is raising questions about the legal and ethical issues surrounding Schiavo's life on a feeding tube.

Lois Shepherd, who also is an associate professor of biomedical ethics at the university, is the author of the newly released "If That Ever Happens to Me: Making Life and Death Decisions after Terri Schiavo."

Shepherd, 27, said she thinks experts have focused too much on a patient's rights and not enough on people's responsibilities to a patient like Schiavo.

"In the last 10 years, it has been turned into a rhetoric about a right to life," Shepherd said. "Rights are necessary and good, but they don't help us solve a lot of these problems.

"Instead, if we think about our responsibility to care and respect people, then we can try to get behind the rhetoric and start talking about the things that really matter."

Schiavo suffered cardiac arrest in 1990 in her St. Petersburg home. Her brain suffered damage from a lack of oxygen, and she eventually went into a vegetative state. Her husband said Schiavo would not have wanted to be kept alive if she could not have recovered, while her parents said she would not have wanted her feeding tube removed.

After a seven-year court battle, Schiavo's feeding tube was removed March 18, 2005. She died 13 days later at age 41.

What was it was about Terri Schiavo's case that interested Americans?

You have a dispute between the husband and the parents, which is one of the things that made the case so big. Pope John Paul II weighed in on the issue at a pivotal time in 2004. The Schindlers, Terri's parents, were Catholic, and they relied on what the pope had said to further their cause. Then right-to-life groups and disability rights groups come together as I think they had not before with the common purpose of preventing the removal of life support from people in a vegetative state.

Republicans thought that it would be politically advantageous for them to push the case. It was, interestingly, a way for conservative politicians to prove their conservative credentials at a time when we were in the midst of this debate about embryonic stem cell research. It tapped into the conservative movement's attempt to frame things as promoting a culture of life rather than a culture of death.

I didn't buy the conservative idea that artificial nutrition and hydration are basic care that should always be provided because sometimes they can cause more suffering than a lack of feeding tubes. It's not a simple issue. The conservative position on it is that it's basic care. The liberal position on it was it's medical treatment. And neither of those is exactly right.

What legal and ethical issues did Schiavo's case raise?

One of the issues is: How much proof do we have to have about what a person wanted before we remove a feeding tube in this kind of a case? What the Schindlers argued is that it should be beyond a reasonable doubt. The legal standard in Florida is that there had to be clear and convincing evidence of what the person would have wanted. The evidence arguably didn't rise to that level, although the court said it did.

Should we treat nutrition and hydration differently than we treat a ventilator? The disability rights movement wanted to say that if you allow feeding tubes for people in a vegetative state, then you're going to discriminate removing tubes from people who are profoundly disabled. It's a big legal issue. If we allow quality-of-life considerations, which ones, and where do we stop?

There were some separation-of-power issues. Not long ago, courts were under attack from the legislatures, which criticized the courts as being activist when they were finding abortion laws unconstitutional or allowing removal of life support. Here you had a case, the Schiavo case, which had been decided by a court, and then the Florida Legislature just passed legislation to say for this one case, we're going to let the governor decide. It goes against all principles of having three branches of government and that they each have certain powers and limits.

What is the best resolution for cases such as Schiavo's?

I think the presumption should be changed for permanent vegetative state after a certain number of years, like two years. When there is no question that someone is in a permanent vegetative state, then the presumption should be that the feeding tube is going to be removed unless there is evidence that the person would have wanted it continued.

Schiavo is just one of many disputed cases. There are 30,000 to 40,000 people in a permanent vegetative state who are being kept alive because of a feeding tube. Unless they indicated that they wanted to be kept alive in that condition, where they have no present interest in continuing to live because they will never experience anything again, we're just keeping them alive for other people. That is a better way to show respect for people in this condition rather than trying to parse through what they said.

In fact, I think that would be a relief for many family members because then society is saying you're not doing anything inappropriate or morally questionable when you seek to remove the feeding tube after two years. You don't have to go to court to fight for this. The fact is that the harder you make it legally, the more the family will think they are doing something wrong.

What should people do to ensure others follow their wishes about end-of-life issues?

The living will is supposed to be the solution, but I'm not a big proponent of it. I think people should name a health care proxy, someone they want to make these decisions.

You have to have human beings make these decisions at the time. I think a lot of this can't be decided in advance. It's going to be decided after the loss of capacity, because you can't anticipate what the situation is going to be and what the question will be.

Most importantly, they have to have communication with the physicians. We haven't yet figured out how to bring the family or proxy together to share information and decide what the goals of treatment are and work as a team. Some physicians are really good at it. It's not a criticism of physicians; it's a criticism of the system that doesn't encourage and support those kinds of conversations.

Tasha Kates is a staff writer for The Daily Progress in Charlottesville, Va.

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