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192 pp., 51/2 x 81/2, 1 fig., append., notes, bibl., index

$28.00 cloth
ISBN 978-0-8078-3295-0

June 2009

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If That Ever Happens to Me

Making Life and Death Decisions after Terri Schiavo

Lois Shepherd

Copyright (c) 2009 by the University of North Carolina Press.
All rights reserved.

Lois Shepherd, author of If That Ever Happens to Me: Making Life and Death Decisions after Terri Schiavo, investigates the lasting significance of the controversial case.

Q: Why is it important to re-examine the Terry Schiavo case? What can be gained?

A: One reason is to try to figure out how things got so crazy. We had a tremendous clash of right-to-die and right-to-life politics. But we can't just dismiss it as being about politics, either, because there was such broad public interest in the case. For a number of years there's been a legal and medical consensus that removing a feeding tube from a person in a permanent vegetative state is acceptable -- but a good portion of the American public seemed surprised about that and uncertain that it was right. So much of the commentary at the time painted the story as being about "starvation" or, on the other hand, "what Terri wanted." Neither of these is accurate. Nor can we answer the question of what to do in these cases just by focusing on people's rights. We also have to look at people's responsibilities.

Q: Why do people take such a strong and, often, emotional interest in Terri Schiavo's story?

A: There's probably more than one answer to that. Some of us are afraid -- we wonder if something similar might happen to us, and how we'd be able to handle it. Some of us are curious -- sometimes rubbernecking curious, but sometimes legitimately; we wonder about pain, shame, family conflicts, losing our abilities. Some people feel sorry, or angry, or righteous indignation over the situation. We all face death; we all have loved ones we know will die -- and we may well have to face decisions like those faced by Terri's family.

But one argument I make throughout If That Ever Happens To Me is that having strong interests, strong emotions about the situation doesn't make us right. Feeling sorry for Terri Schiavo, for instance, isn't going to be as right a response as considering the full range of responsibilities involved -- our own as well as those of others.

Q: How, in writing this book, do you hope to honor Terri Schiavo?

A: I did not know Terri Schiavo, or her family, and I'm not sure this book strives to honor her as much as books of a more personal nature might. At the same time, respect for Terri was paramount in my approach to writing this. One of my constant concerns throughout the case was how Terri was "appropriated" by so many people around her -- in the name of "right to die" or "right to life" politics, rather than concern for her. If there had been more concern for her, then there would have been more effort to respect her privacy and treat her as a person with dignity. At one time, you could buy videotapes of Terri in a permanent vegetative state off the Internet for $100. Two congressional committees actually subpoenaed her to appear in a hearing. If you do a quick on-line search of Terri Schiavo you'll see lots of awful impersonations of her -- this was fed by the public's inundation of her image. Unfortunately, those depictions are how she may be remembered.

It's hard to write a book like this, about a private person, without some sense that the mere act of writing is a privacy invasion. But I tried to be mindful of that and deliberately chose not to include any photographs of Terri for that reason.

Q: Did your understanding of the case, and its key players, change as you researched the book?

A: I think I gained more sympathy for her family -- both her parents and her husband -- and for families generally in emotional crises.

A rather odd thing happened as I wrote the book. I had always thought it terribly wrong to show those videotapes and photos of Terri over and over on television. And I still do -- so that didn't change. But while in the beginning I thought those pictures only revealed tragedy and that she looked awful (especially in comparison to the beautiful woman she had been), lately I've been seeing the pictures as carrying some beauty; I can't really explain it.

I still think her feeding tube should have been removed because she had no hope of recovering consciousness, but I think it should have been done not out of concern for the person she had been (the "pretty" pre-collapse Terri), but for the person she was afterward. For fifteen years she was kept alive only for other people, not for herself, and that is an ultimate (if unintended) abuse of a person.

Q: How do you hope to reframe some of the issues, such as respect, the value of life, and the "right to die," surrounding the controversy?

A: Too often, in law and biomedical ethics especially, we link the idea of "respect" almost exclusively to respecting a person's autonomy, or choices. And then we try to hammer the evidence of a person's wishes into that square. But often we have too little evidence of a person's wishes, and, in addition, there are other values at stake in these decisions -- respect for privacy, respect for dignity as a human being, the responsibility to take care of others, and concern for a person's family. In the book I urge that we move away from framing these issues primarily in terms of a trade-off or balancing of rights -- the right to die or the right to life -- and think more broadly about our responsibilities to respect and care for people, especially those who are vulnerable.

Q: What are the critical factors that you think should be considered in the removal of life support?

A: Of course a person's wishes should matter, to some extent, but that only gets us so far. For one, we are often only making guesses at their wishes. The evidence about Terri's wishes, for example, was pretty thin. There's also concern in certain conditions that a person has changed so fundamentally that it's not clear how much weight we should give prior wishes, if any. So a person's wishes are important, but only one factor in these sorts of cases.

Disability rights advocates decry any "quality of life" considerations, but I think when we're talking about no reasonable probability of any return to any level of consciousness, then we have to take that into consideration. We can draw a morally relevant line between consciousness and no consciousness. Terri's case seems an obvious one in which to make a charge of exploitation -- as politicians and others used her for their advantage -- but other permanently vegetative individuals are kept alive for family members or care givers or society, not for themselves. Keeping these people alive for years when there is no hope for recovery is an inappropriate instrumental use of them.

For another common kind of case, someone who is terminally ill, I think we need to give considerable deference to the family (or named proxy) when the patient can no longer make decisions for him or herself. If there is no evidence that the surrogate decision maker is ignoring what the patient would have wanted, or the patient's best interests, then we should defer to that surrogate.

Finally, we have to be cautious about thinking that living wills are going to solve these dilemmas. There's rich and considered evidence that they don't and can't.

Q: What about medical advances -- haven't we seen cases recently where people in vegetative states recover?

A: In short, the answer is no: if the question pertains to a permanent vegetative state, which is the proper (and proven) diagnosis for Terri Schiavo. Experts have gotten better at making these diagnoses, and at understanding other states of consciousness, but one of the common misperceptions that came up repeatedly during the Schiavo case was that there were cases of 'reversal' or recovery from a permanent vegetative state. There have been misdiagnoses, it is true, and sometimes these occur because of neglect or even for political reasons, which is just shameful. But, as I discuss in If That Ever Happens To Me, the permanent vegetative state is truly unique, irreversible, and, if diagnosed properly and conservatively, offers no chance of recovery to any level of consciousness as traditionally defined.

Q: Who were the significant political players in Terri Schiavo's case?

A: There were too many, and too many wannabes. Governor Jeb Bush of Florida, of course, was heavily involved in the case -- not just pushing through legislation to allow him to reinsert Terri's feeding tube, but also ordering spurious investigations into Michael Schiavo's treatment of Terri, pushing state welfare agencies to get involved, and ordering the state department of law enforcement to "take possession" of Terri near the end of the controversy (they were thwarted by local police). His involvement, more than anyone else's, was most clearly an abuse of power. But we've got other examples -- from a memo authored by counsel in Florida Senator Mel Martinez' office that identified the Schiavo case as one that the Republicans could gain politically from, to former Senator and medical doctor Bill Frist's "diagnosis" of Terri on the Senate floor after viewing a few minutes of videotape footage. Christian fundamentalists, right-to-life groups, and disability rights groups all weighed in heavily in the political maneuvering.

Q: Why was there such an effort by leaders to make this case "special?"

A: Terri's case was special in a way, because there was such a split between her husband and parents about what should be done. These are the cases the public hears about -- when family members disagree among themselves or there's disagreement between the family and the physicians. There are thousands of other cases we never hear about, as feeding tubes are removed from patients daily across the country.

But this split allowed politicians to exploit the case and make it stand in for something else -- for the protection of all vulnerable human life. In other words, fetuses and embryos. The case was as much about abortion and embryonic stem cell research as it was about end-of-life decision making.

Q: How do you think the media contributes to our perceptions of Terri Schiavo and vegetative individuals?

A: On the one hand, when the public was able to see Terri Schiavo, with her blank expression and limb contractures, they understood more clearly what life in a permanent vegetative state means. And the great majority of them said, "If I'm in a situation like that, let me die." With Karen Ann Quinlan, the first such case from the 1970s, the public only ever saw her pretty high school picture, and I'm not sure the public was ever able to really process what her condition meant. In this way, the media images of Terri Schiavo might have been educational. But they were mainly troubling, not only in their overuse, but in the way the media used them to entice viewers, sell programming, and create doubt about whether she had some consciousness. In particular, when paired with dogmatic pronouncements by commentators who demonstrated a poor grasp of the medical or legal facts of the case, the use of her image began to seem abusive.

What's most interesting to me about the images is that while consciousness is and should be legally significant in cases like these (and there really is no doubt that Terri had none), I'm not sure consciousness is where the public would draw the line. After seeing the videos that misleadingly appeared to show Terri responding to her mother's presence, the majority of Americans still said, "If I'm in a situation like that, let me die." And it's hard to know where law and ethics should go with that. What do we do about people who are minimally conscious? This book does offer some answers to these questions, but the answers aren't easy -- and shouldn't be.

Q: How did the debate over the preservation of life change during the Schiavo case? Is it still changing?

A: One of the most novel developments in the rhetoric of the case was how Terri's parents championed her "right to life." The more common legal framework of these cases is the individual's right to refuse treatment (even if it causes death) vs. the government's interest in preserving life. But here the government wasn't stepping in to save Terri's life -- it was her parents, and so they framed the argument as being about her "right to life."

This framing clearly aligns with right-to-life groups' efforts to preserve the life of fetuses and embryos and is contrasted with the "right to die," which has become framed almost exclusively in terms of "choice," like the other side of the abortion debate. So the Schiavo case took on the language and fervor of current culture wars surrounding abortion. And that was an injustice to all sides.

Q: Do you feel as though there can be any "right" answers in a case such as this?

A: Better answers, to be sure. But I think that when we allow ourselves to become confident we've reached the "right" answer, indisputably and incontrovertibly, we're not listening to each other carefully enough. Guidelines can help, but I think we're never going to find easy answers. Our challenge is to make decisions in the face of some moral uncertainty -- because decisions have to be made, no doubt, and are made, whether through action or inaction, whether a feeding tube is removed or left in place. Perhaps the greatest value we bring to these issues is our willingness to struggle with them, to be uncomfortable, even to be pained by them. That, more than anything else, may be the measure of our humanity.


This interview may be reprinted in part or in its entirety with the following credit:

A conversation with Lois Shepherd, author of If That Ever Happens to Me: Making Life and Death Decisions after Terri Schiavo (University of North Carolina Press, June 2009).

Publicity: Gina Mahalek, 919-962-0581
Sales:Michael Donatelli, 919-962-0475
Rights: Vicky Wells, 919-962-0369

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