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THE CASE OF TERRI SCHIAVO

This article is posted here with the permission of The Hastings Center.

 

Garrison Colloquium: The Long Dying of Terri Schiavo—Private Tragedy, Public Danger
A presentation by Bruce Jennings

On May 20, Bruce Jennings, one of The Hastings Center's senior research scholars, delivered a presentation on the bitter controversy over Terri Schiavo, who died in March of this year after her feeding tube was removed following the instructions of her husband, Michael Schiavo. The presentation was part of the Center's Bioethics Colloquium series, and an edited text of it is offered here. A discussion following the presentation is not included.

It's with mixed feelings that I thank you and offer my appreciation for coming to this seminar this afternoon. It's a beautiful day. The Yankees are playing the Mets at Shea Stadium. There are plenty of other worthwhile things that you could find to do.

But I do appreciate the fact that you have come. Still, I am ambivalent. Do you feel as I do: a little sick of this topic, weary, dismayed perhaps, by how the controversy played itself out in the media around the world over several months in the spring?

It's not my intention to engage in a polemic this afternoon. I will try to reflect on lessons that might be learned from this tragic, and sad, and altogether unfortunate case of Teresa Marie Schiavo, her long dying, and her death on March 31, 2005. I want to learn from it, and to place it in context—a somewhat broader context, perhaps, than the media frenzy that surrounded the case and its controversy was able to do.

This is an especially literate, patient audience, so with you I dare to begin with a quotation from Marcel Proust. I think it is a particularly apt epigraph for our discussion this afternoon.

Facts do not find their way into the world in which our beliefs reside; they did not produce our beliefs, they do not destroy them; they may inflict on them the most constant refutations without weakening them, and an avalanche of afflictions or ailments succeeding one another without interruption in a family will not make it doubt the goodness of its God or the talent of its doctor.

My remarks fall into three parts. I want to first look backward and give you an overview of the legal framework within which this case was ultimately decided—actually decided many, many times over the course of several years. Next I want to look at what some people have called the "perfect storm" that surrounded the Schiavo case, bringing together cultural, political, and ethical factors all at once and creating a phenomenon that is unique, unprecedented in the annals of American end of life care.

Finally, I want to look forward, because the Schiavo case, and others discussed in recent years in political settings and in the literature, suggests that this legal framework is not perfect. It's there, and it works, but it is not without flaw, and we can do better in the years ahead .

I do not wish to be misunderstood: I don't think we need to reverse course, but I do think we need to refine our thinking, our procedures, and our decisionmaking in order to make them more sensitive, to make them more discerning of difference and of differential need on the part of families and patients. Finally, we need to encourage people, frankly, to do what is always so difficult to do in our culture, and that is to communicate better with their families, with their physicians, perhaps even with themselves-in that internal dialogue, in their minds and in their hearts-about the inevitability of our eventual death. But it's not just about death that we are talking, really, it's about how we die. It's about the dying process and its experience-the last chapter of our lives, of living near death.

I

All right, looking backward. What's the context, the legal context at least, for the Schiavo case? I'm going to summarize this very quickly. The context began to be built in 1975 and 1976 by the state supreme court of New Jersey in the case of Karen Ann Quinlan. There are, in fact, three significant cases, all of them involving young women, all of them involving anoxic brain trauma, that resulted in a permanent unconscious condition. Karen Quinlan was the first. Nancy Beth Cruzan, of Missouri, in the 1980s, was the second, and Theresa Marie Schiavo, in the late 1990s and early 2000s, was the third. Different causes, but pretty much same effects, pretty much same condition, and many of the same controversies.

But Quinlan was first, and so her case was uncharted territory, legally speaking, at that time. Starting with the Supreme Court of New Jersey, spreading through appellate courts and supreme courts throughout the United States in the intervening fifteen years, over one hundred appellate level court decisions in thirty-plus states basically built this framework of ideas that I'm about to review. It was reinforced by statutes passed by state legislatures, by reports from governmental ethics commissions, by reports of medical nursing professional nursing societies, by guidelines from medical professional groups, and by guidelines from private groups like The Hastings Center. All of this culminated in a huge body of material in the 1980s and 1990s, starting with the Quinlan case.

Here are the basic elements of this legal framework:

  • Competent patients have a common law and a constitutional right to refuse medical treatment, even if that treatment is necessary to sustain life.
  • Incompetent patients have the same rights as competent patients; however, the manner in which these rights are exercised is different.
  • The decision-making process should generally occur in the clinical setting without recourse to the courts.
  • In making decisions for incompetent patients, surrogate decisionmakers should apply the following standards, in descending order of preference: subjective standard (the patient's own living will or durable power of attorney for health care), substituted judgment (do what you infer the patient would have wanted), best interests (do what is best, most reasonable for the patient).
  • There is no ethical difference between withholding or withdrawing life-sustaining medical treatment.
  • Artificial nutrition and hydration is a medical treatment and may be withheld or withdrawn under the same conditions as any other form of medical treatment.
  • The right to refuse life-sustaining medical treatment does not depend on the patient's length of life expectancy or being "terminally ill."
  • It is acceptable to provide pain medication sufficient to control a patient's pain even if that may foreseeably hasten the patient's death.
  • Active euthanasia and assisted suicide are morally and legally distinct from forgoing life-sustaining treatment.

The central point to observe about this framework is that it is patient-centered: it is centered on the notion that the individual has a right to determine what kind of medical care he or she receives, at any time during their lives, including when they're terminally ill or critically ill. People have a right to control what is done to their own bodies. People have a right to control the use of life-sustaining medical technologies and machines in accordance with their own preferences, beliefs, and values.

That's the centerpiece, and it's all straightforward enough when the person has decisionmaking capacity. But of course in the case of Karen Quinlan and so many others over the years, the person in question isn't able to make these decisions for himself or herself. And the Quinlan court said, in effect, "Just because you lose decisionmaking capacity, the capacity to understand what is being done to you, your ability to communicate your wishes and desires to others, doesn't mean that you lose the right to refuse treatment. It just means that someone else has to exercise that right for you. It has to be exercised in a different way." And that leads to the whole topic of proxies and advance directives and surrogate decisionmaking.

The right to refuse life-sustaining medical treatment does not depend on the length of a person's likely life. It isn't a right that exists only during the last six months of life. It isn't a right that comes into being only when doctors declare you terminally ill. With the persistent vegetative state, the longest a person has lived is about thirty-six years, I believe. A person in a persistent vegetative state really cannot be considered terminally ill by any normal definition of that term. But this isn't about length of life so much as it is about the balance to be struck between the value of life and the quality of life, or, to put the point differently, the benefits and the burdens of the treatment available to people.

Moreover, this right to refuse covers both withholding and withdrawing treatment. The courts have said again and again that it's not just about not starting; it's also permissible to stop once you've started. If you hear a physician tell you, "Well, we wouldn't have to start if you didn't want to but now that we've started we can't stop—it's illegal," find another physician, because that's not true. It's not true legally, and a lot of people feel it isn't true ethically either.

The courts have said, "Don't send these cases to us. We're judges. What do we know? We have no business making these decisions. Make the decisions at the bedside, with the patient if possible, or with the family, with the agent, with the physician; make the decision as close to the bedside as you possibly can." That was a message to hospitals to learn how to resolve conflicts and disputes in the hospital setting and not to use the courts as an excuse for not trying to communicate, not trying to resolve disputes. This notion on the part of courts is the origin for the movement that in the 80s and 90s produced hospital ethics committees in virtually every large hospital in the country. At the time of Quinlan, they did not exist except in a few Catholic hospitals, but hospital ethics committees have become a part of the recognized medical landscape because the courts have said, "Interact better together and don't come running to us every time there's a problem; figure out how to resolve the dispute if you can."

Two questions arise if a person loses decisionmaking capacity: (a) who should decide? and (b) what should be decided? Who should the surrogate (or the "agent" or "proxy") be? And what should that person do? In the best of all possible worlds, according to the courts, the person should be a person who has been designated by the patient while the patient still has decisionmaking capacity. That's the so-called durable power of attorney for health care. That's what in New York State we call the health care proxy.

(I made some copies of the New York State health care proxy form, and you can pick them up if you wish. You do have to have someone you can turn to, someone you can trust, somebody you can count on. If you haven't filled these out, ladies and gentlemen, with all due respect, I suggest as strongly as I can that you do so, if not for yourself, for the sake of your family, because it's going to make things much easier. Not easy, they will never be that, but easier. And you will have to talk with your physician, family, loved ones beforehand. That can be hard to do. Filling out the form is not enough; advance directives are not very helpful without advance discussion.)

The courts have developed standards for how the proxy is supposed to act. The courts have said, "Artificial nutrition and hydration is not a special thing. It should be handled just like any other form of medical treatment." The courts have also said that physicians may (indeed, some rulings have suggested that they must) provide adequate palliative care and pain control. Finally, the courts have repeatedly said that refusing medical care is not the same as committing suicide. Legalizing physician assisted suicide is a related, but legally and ethically distinct, issue. That became the hot button issue, really, in the 1990s. The Schiavo case was not about suicide or assisting with suicide. It returns us to the hot button issue of the 1980s and of today, apparently, namely, artificial nutrition and hydration.

My next slide is an image of the decision tree that the legal framework has established for end of life care. It comes from a fine report by the National Center for State Courts in a report written for judges who must deal with these cases. [Note: On the screen is a very complex decision tree chart with tiny lettering. It has the shape of three branches descending from a common point at the top.] I love this chart. Of course you can't read it, the text is too small. But I put it up here to call your attention to two things: the shape of it and the complexity of it. On the right-hand side you see the decision tree sort of comes down a little ways: that's what happens when the patient has decisionmaking capacity. Now over here, this is a little bit more complicated, but not too bad. This is when a patient has an advance directive. But right down the center all the way down toward the bottom of the screen, this is what happens when you don't have capacity and you don't have an advance directive, when some family member has to talk to the doctor, but without the legal authority that an advance directive would have conveyed.

You do not want to go down the center of this chart. You really don't. That's why advance directives are so important. This is a very lawyerly chart-the shape of it, the complexity of it; who but a lawyer could have come up with a decision tree of that complexity? We're talking about ordinary people here at a time of crisis in their lives, and they have to try to think straight, and we're asking them to walk a pathway that very few of us would be able to walk even in our best days.

II

Now let us turn to the Schiavo case. I have prepared a hand-out with a timeline of the case just to refresh your memory. I'll go through this very quickly. She fell unconscious in 1990, and over the course of many years, starting in 1993, her husband wanted to forgo artificial nutrition and hydration and life support for her on the grounds that she would not want to be kept alive this way. Her mother and father, the Schindler family, disagreed with Mr. Schiavo, and a controversy began in 1993 that lasted over a decade, going back and forth in the courts many times.

The courts were willing to affirm Mr. Schiavo's authority to make those decisions. Questions were raised about her true prognosis, and the courts wanted to take a very careful look at that. Questions were raised about what she really wanted, what her wishes were. The courts wanted to take a very careful look at that. And so it went back for rehearing numerous times, but each time, the result was pretty much the same-the courts reaffirmed Mr. Schiavo's position rather than the Schindlers' position. The tube was removed twice, and reinserted twice.

The second time it was reinserted because-and now things started to superheat politically and this is what made the Schiavo different from its predecessors-Governor Bush of Florida and the Florida state legislature passed a special law just to insert Terri's feeding tube. Some time later the Florida Supreme Court declared that statute ("Terri's Law") to be unconstitutional.

Just as the Florida state government got into the act in a big way, so did the federal government as the U.S. Congress passed and President George Bush signed a hastily considered federal law targeting the Schiavo case. This law was not as blatantly directive as the Florida law had been. It did not say :"Put the tube back in." Instead it paved the way for the Schindler family to take their lawsuit to the Federal courts, perhaps in the hope that the federal courts would not be limited by the legal framework we have been discussing. But, to the surprise of some, the federal courts took a look at it, and said, "The State courts are right. We're not going to reverse them." And so finally, at the end of the day, the state court in Florida yet again ordered the feeding tube be removed in accordance with Mr. Schiavo's instructions. And it was, and Terri Schiavo died several days later.

There are several levels to this controversy. I've already mentioned the first level. There were bitter disputes about the nature of her illness, the nature of the diagnosis and prognosis, what her wishes were, whether her prior wishes were reliable-perhaps her current wishes would be different-and then there was a very bitter attack on Mr. Schiavo and his fitness to be a surrogate decisionmaker.

These questions tended to be more questions of fact. At a somewhat more conceptually complex level, there were powerful controversies going on in this case that reverberate throughout our society still about the relative value of the meaningfulness and quality of life to the person who's living it, versus the sanctity of life, regardless of how impaired or how limited that life might be.

Remember the play and the movie in the 1980s called "Whose Life Is It Anyway?" It was about a man who sustained a spinal cord injury and became quadriplegic; he was unable to move from the neck down, but was mentally totally intact and clear. Facing a life of such disability he wanted to be allowed to die. Well, "Whose life is it anyway?" is the question that the Schiavo case forced us to examine from several different points of view: Is it the person's? Is it the agent's, Mr. Schiavo's? Should it be the family's-do the Schindlers have a better claim than the husband does on caring for her? Hardly anybody in this case said it should be the physician, perhaps showing you how far we've come since the Quinlan case in the 70s, when that was a big issue.

Who's life is it anyway? How about the state's? The state has the inherent power to protect life and health; is that where we should turn in end-of-life cases, especially when a very intense minority wants to see life prolonged? It is ironic that people who consider themselves conservative in this case were the ones who wanted to give this power to the government. Standing behind this seeming inconsistency is the fact that many religious persons and groups in our society believe that this decision to forgo life-sustaining treatment is an inappropriate decision for us to be making because it is encroaching on something that is not ours to decide. From some religious perspectives, if not all, we do not belong to ourselves. I don't understand why this same type of perspective would not just as readily instruct us not to use these machines, for that too is putting human will in the place of divine will. But in any case the machines were in place and so taking them out was the practical question, and many people resist that. (Because long-term prognosis cannot be determined immediately after a person's injury, artificial feeding tubes must be inserted to sustain the unconscious person who may not progress into PVS but who may instead recover consciousness.)

Artificial nutrition and hydration is something we can talk about: do we agree with the legal framework that says it is just another kind of treatment, or is it something special?

Then we have all kinds of interesting questions that have never been seen before in these kinds of cases. The fierceness of the controversy over what was wrong with Terri Schiavo was striking. But more striking to me still was the way that the video tapes and web sites played a role in this controversy in a way they never had before. One curious thing about the permanent vegetative state is that it involves destruction of the higher structures of the brain, but not the brain stem. It is not the same as brain death. People in PVS can breathe. Heart beat, lung function, and other biological functions continue. Also people in PVS are not asleep or unconscious. They're apparently awake. They go through wake and sleep cycles, and much of the time their eyes are open. And if you watch them, they have movements that are seemingly responses to stimuli in the environment around them.

Medicine is not so advanced a science that experts never disagree. But the overwhelming weight of opinion among neurologists is that these are reflexes only and don't signify awareness. Others who observe or care for these patients-family members, for example, sometimes nurses-often come to believe that there may be some awareness in there, that there is something behind the eyes. What is observation and what is projection, seeing what one desperately wants to see? In the passage quoted earlier, Proust, with his usual subtly and irony, joined together trust in God and trust in doctors. During the Schiavo case a wedge was driven between them. For my part, I think we must trust and rely on our diagnostic technology and the experience of those most expert, not because they are infallible but because there is no reasonable alternative. Otherwise we will keep individuals in PVS on life-support machines until their bodies begin to decompose.

Nonetheless, these are difficult issues of knowledge, prudence; issues challenging in the calmest of times, but exceedingly difficult when weighed down with intense emotions. Proust is surely right about this. Facts may batter beliefs with refutations without weakening them. During the Schiavo case we tried to ask ourselves in public: What counts as evidence? What counts as science and reason? It was not handled at all well. Not in the shouting matches of the media talk shows. Not on-line, which is more of an information dirt road than an information superhighway. In this instance, public debate did little to enhance public understanding.

What made the Schiavo case different was the use and power of the image. Her image. Video tapes aired on the media and endlessly looping on websites. Hours of footage edited to show a few moments of behavior, reaction, or reflex. One of the things we need to do in the future is to work on our understanding as a society of some of these neurological conditions and to become much more sophisticated consumers of their visual representation. Should we also talk about privacy? It ceases to exist in this context.

Also, many other end of life cases are somewhat ethically easier, I think, because in them you have the suffering of the person who is experiencing something, and the continued treatment is continued suffering. When that is the case the reasoning behind forgoing life-sustaining treatment seems to be more compelling. But in the persistent vegetative state or permanent vegetative state, if the doctors are right, there is no awareness there, hence no suffering. Therefore some people ask, "If she's not suffering, what's the problem with keeping her alive? She doesn't feel anything, she isn't aware of what's being done to her."

At this point the conversation can go one of three ways. It can take up financial costs-which medical expenses are reasonable and which are wasteful. Or it can turn to the interests and needs of those close to the patient, such as the Schindlers and Mr. Schiavo, and focus on their interests and rights. Or it can turn to things owed to Terri that survive her permanent loss of consciousness and to what symbols and messages are healthy and appropriate for our society. All three are important to explore, but I believe we particularly need to concentrate our thinking on the last of these. What does it mean to honor a person's dignity, to respect their wishes and to honor their memory, even though they no longer have an identity or a presence in the form of consciousness? I think that's where we ethicists need to do more hard work. It's key to understanding what should be done in these cases, but it is difficult.

Finally, the reason I consider this case to be a "private tragedy," and a "public danger," is there is a still more general and important level of the controversy. It is a level at which this case tells us something, not about Terri Schiavo and PVS and families and medical ethics, but about ourselves as a society.

How well do we handle this kind of controversy, what kind of discourse we bring to bear on it? The law worked well in this case in the end, although it allowed matters to be drawn out for a very long time. But our politics failed. Our discourse largely failed. What, following the great philosopher John Dewey, we might call our "social intelligence" failed. That should trouble us and give us pause, as much as the long dying of an unfortunate young woman or the bitterness and heart break suffered by her family.

This is a case that is marked by the fingerprints of Roe v. Wade and the abortion controversy from start to finish. It's marked by the disagreements in our society between secular and religious perspectives. It is a case in which there is a striking discrepancy between the behavior of the executive and the legislative branches of our government and the judicial branch. The U.S. Congress pulled out all rhetorical stops in a midnight session. The president flew dramatically back from Texas and entered Washington on Palm Sunday. It was an extraordinary moment of political theater.

A short time later, the federal courts, with almost a shrug, said, "Are you kidding? What is the issue here? It's clear who should have the right to decide." The courts had a framework. And they used it, and they stuck to it, and it was not a particularly difficult decision for them. After all, the courts are guided largely by precedent and they had over one hundred such cases to pave the way in this decision.

Politicians, the elected officials, lack that kind of ethical, political agreement and framework that the courts enjoy. And so do we citizens in our general civic and moral culture. For us it was a terribly wrenching political matter. It's very important for elected officials, political leaders, to learn how to handle this sort of thing in a more reasoned, sober, and mature fashion. But it's no less important for citizens to learn how to handle these things in our own minds and hearts, in our own churches, communities, and conversations; so that we give the right message to our leaders who will then be reassured that we will support them if they act responsibly and judiciously, and that we will hold them accountable if they don't.

At bottom the Schiavo case takes us from bioethics to questions of much larger scope. These are questions of toleration, compromise, of civic discourse itself. Can we compromise, or is this (feeding tubes, say) nonnegotiable? People take it at a very deep and fundamental values level. They take it at a very deep religious level. Yet we do need to learn to live together in peace, and that requires compromise.

One final thought on the perfect storm of controversy. To our shame, we lost sight of Terri Schiavo as a person, of her as a human being, regardless of the impairment, regardless of how close to death she might have been. We lost sight of her as a person and made her an icon. I submit that it's always dangerous and dehumanizing when that happens. And that worries me as much as anything else that we can talk about. This ceased to be about a human being who was dying; it became about an abstract symbol. It became about winning and losing. I hope and believe that most of the people who got caught up in that level of the discourse will soon look back at what they said and be ashamed of themselves, especially those who spoke so stridently and with too much confidence and too little humility in the media and on the Senate and House floors.

III

Let me conclude, not in a spirit of accusation and 20-20 hindsight, but by looking forward. Our end-of-life care legal framework did work, albeit slowly and painfully, in the Schiavo case. But it is not perfect, and we can do better in the future if we are able to stop circling the wagons and take a hard look at what still needs work.

To begin with, I think we have to take very seriously the idea that this framework is too individualistic and too adversarial. We need to figure out how to handle end of life decisions in other ways that do not put such a burden on people to navigate their own decisionmaking. Hospice does that very well. But a lot of people don't get into the hospice system, and they have to work through a very complicated system-a virtual minefield of medically aggressive and largely futile overtreatment-as they die.

Another major thing is, we have to take very seriously the possibility of various kinds of bias that have crept into our legal framework and our ethical framework. We do have to take seriously those who feel very much affronted by the idea that artificial nutrition and hydration could be withdrawn from a dying person. It is vital to resist this position, but not to dismiss it. The values and traditions behind it should be treated with serious engagement and respect. Here increasing scientific and medical understanding of how providing artificial nutrition and hydration can actually increase a patient's suffering (not comfort him) and actually shorten a person's life(not lengthen it), can allow us to remain firm in our grasp of the moral imperative of comfort and nurturance and remaining present to the dying while at the same time better understanding how certain technologies actually work at cross purposes with that imperative. Common ground can be found.

Moreover, we must take very seriously the perspective of those fellow citizens who live with impairments, who feel that there is a disvaluing of disabled life that has crept into this framework of autonomy in decisionmaking at the end of life. This, they argue, unduly biases decisionmaking against persons with functional limitations, as if their lives were somehow not worth preserving. The law is being used as an excuse to get them out of sight, out of mind, and out of the way.

I don't believe that such a critique accurately or fairly applies to the persistent vegetative state and to the Terri Schiavo case. But there are other conditions of disability and impairment where this warning against bias, and a misplaced norm of able-bodied health, does apply. We must be aware of our own blind spots. In the years ahead, every moment and every ounce of political and moral energy we spend talking about the right to remove or refuse life-sustaining treatment, ought to be balanced by an equal amount of time and advocacy on how to provide adequate supports and services to persons who have chronic illness and disability.

If we don't balance the equation in that fashion, we will be guilty of a profound bias in our thinking and in our health care system. For too long we have focused on sustaining meaning and quality of life (as well as respecting rights and honoring wishes) only at the very end of life, in the last few pages of our stories. In the coming aging society, and even now, we very much need to move that concern upstream. The same concern and respect that we have shown for those quite close to death should be shown as well for the chronically ill and those living with disabilities several years before their death.

Since Quinlan we have empowered patients and families in the making of medical decisions, and Schiavo largely vindicates and reaffirms that empowerment. But that will be a hollow advance if we do not also support them with good systems of palliative and hospice care. And not just at the time of their final trip to the hospital, or even in their last six months of life, but for as long as their illness or impairment forces them to adapt and change. Not curing everything or living forever, but living well in the face of change and adversity, for however long we are given: that to me is the best lesson we can learn from the long dying of Terri Schiavo.

May 20, 2005

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