Whose life?

On March 31, a young Florida woman, Terri Schiavo, died after surviving 15 years in a persistent vegetative state and 13 days without nourishment or water. Amid the cacophony of voices and arguments surrounding her husband's decision to withdraw nutritional support, the Catholic Church's teaching on the subject—nuanced and more concerned with personal liberty than some might expect—was often drowned out. On the night of the day Schiavo died, three Boston College theologians and a Jesuit physician spoke about end-of-life issues in Catholic thought, in a panel sponsored by the theology department.

A 400-year-old logic By James Keenan, SJ		In law, as in theology By John J. Paris, SJ
The clinical experience By Jon D. Fuller MD, SJ	Judgment call By Lisa Sowle Cahill
Photos by Gary Wayne Gilbert Related Links

A 400-YEAR-OLD LOGIC
By James Keenan, SJ

Most of the cases about end-of-life issues that have been adjudicated in the United States have involved Roman Catholics. Karen Ann Quinlan, a Catholic, was removed from a ventilator in New Jersey in 1976. The fact that she was Catholic contributed to the reasoning for taking her off the ventilator. Nancy Cruzan was taken off hydration and nutrition in Missouri in 1990, an act backed by her pastor and by Catholic argument. Paul Brophy in Massachusetts and Brother Joseph Fox in New York are similar examples. Unlike some religious traditions, Catholicism has a deep and clear teaching that extraordinary means of maintaining life may be omitted if the patient or the family finds these means to be too burdensome as a person faces death.

The tradition took root in the 16th century with the Council of Trent, convened to shore up Church doctrine and teaching in response to Protestantism. Out of the council came the field of moral theology; the Church began to develop moral manuals to form priests and provide consistent moral direction. It was through moral theology that the Church worked out its teaching on sanctity of life—that there can be no direct killing of the innocent. Because Catholicism has this long-articulated teaching, its position on the use of extraordinary means to prolong life (and on just war and self-defense) is well developed.

The concept of burden is key in Catholic tradition. In the 16th century, even before the moral manuals were written, theologians were asking whether a person of faith needed to pursue life-saving surgery if, for example, the cost would put him and his family on the street. Now we raise questions about ventilators. Can you take a person off of a ventilator? Can a ventilator constitute a burden? What about antibiotics? I worked as an ethicist at the Foundling Hospital in New York, where we would talk about which procedures might be burdensome for a young infant clinging to life but also dying.

In 1980, the U.S. bishops began a protracted discussion about hydration and nutrition. It went on until about 1992, and it was marked by regional differences. The bishops of New Jersey, through their state Catholic Conference, said: Remove hydration and nutrition? You might as well starve the patient to death. The Pennsylvania bishops made a similar statement. The bishops from the states of Washington and Oregon, on the other hand, said that a patient in a persistent vegetative state (PVS) or a patient who is in a burdensome situation had a right to the removal of hydration and nutrition. In Texas, 13 bishops took a similar position, while the remaining three were opposed.

Then, from 1989 to 1995, the U.S. bishops worked to compose guidelines for Catholic health care, which they published as the Ethical and Religious Directives for Catholic Health Care Services. Broad in scope, the guidelines consist of 72 directives, covering topics ranging from "the professional-patient relationship" to "issues in care for the beginning of life" to "issues in care for the dying." On the matter of extraordinary means and reasonable burden, three directives in particular apply. To some extent, they have come to be relied on by people from other faith communities also. They adhere to a logic and teaching that is 400, even 500 years old:

Directive 56: "A person has a moral obligation to use ordinary or proportionate means of preserving his or her life. Proportionate means are those that in the judgment of the patient offer a reasonable hope of benefit and do not entail an excessive burden or impose excessive expense on the family or the community."

Directive 57: "A person may forego extraordinary or disproportionate means of preserving life. Disproportionate means are those that in the patient's judgment do not offer a reasonable hope of benefit or entail an excessive burden, or impose excessive expense on the family or the community."

Directive 58: "There should be a presumption in favor of providing nutrition and hydration to all patients, including patients who require medically assisted nutrition and hydration, as long as this is of sufficient benefit to outweigh the burdens involved to the patient."

When the bishops took up whether to vote on this set of directives in 1995, there was only one query. It was: Does directive 58 leave the question of hydration and nutrition open? It was asked by Bishop Joseph Fiorenza of Texas. And he directed the question to Bishop Alfred Hughes of Baton Rouge (formerly of Boston, now archbishop of New Orleans), who chaired the committee that worked for six years on the directives. Hughes answered: It does. Fiorenza turned to his fellow bishops and called for a full vote. The bishops endorsed the directives unanimously.

It is directive 58 that substantiated the position of taking Terri Schiavo off life support. In the United States, this directive remains in force, and no known statement from the Vatican has been made requiring the American bishops to amend this teaching. On the contrary, directive 58, like the other directives, was approved by the Vatican.

James Keenan, SJ, holds the Gasson Chair in Theology at Boston College until the end of the year, when he will join the theology faculty as a tenured professor. He is the author of Moral Wisdom: Lessons and Texts from the Catholic Tradition (2004).

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IN LAW, AS IN THEOLOGY
By John J. Paris, SJ

Clarence Herbert went to a California hospital in 1981 for a simple ileostomy closure. While in the recovery room, he had a cardiac arrest. By the time he was resuscitated, he had suffered such anoxic damage that the doctors were convinced he would never regain consciousness. Prior to surgery, he had said to his family: "If anything goes wrong, I don't want to be another Karen Ann Quinlan." (Quinlan at that time had been maintained with artificial nutrition and hydration in an unconscious condition for more than six years, after being removed from a ventilator. She would continue to live for another four.) At the request of Herbert's family, his ventilator was removed, but Herbert breathed on his own. He had become precisely what he had stated he did not want to be: an unconscious patient who could be sustained in that condition for years. A few days later as a nurse was putting potassium into his IV line, one of Herbert's sons told her: "We don't want any life-prolonging treatments."

Dr. Neil Barber talked with the family and at their request ordered the IV withdrawn. Six days later Clarence Herbert died. A nurse went to the district attorney with the following questions: "Isn't food and water ordinary means? And isn't every patient entitled to ordinary care?" The district attorney believed that Herbert's physicians had starved him to death and brought a murder indictment against the surgeon, Robert Nedjl, as well as Dr. Barber.

The issues explored in the Los Angeles district court, and then at the California Court of Appeals in Barber v. Superior Court, are the ones John Paul II addressed in a March 20, 2004, speech on care of patients in a persistent vegetative condition. The pope said, "The administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act . . . and as such is morally obligatory." But is the provision of artificial nutrition and fluid always ordinary means or is it sometimes extraordinary? The difficulty with the question is partly one of language. We tend to think of "extraordinary means" as exotic technology. Yet in moral theology and bio-ethics, the term refers not to technique but to moral obligation. The issue is: What are you obliged to do to act ethically?

The California Court of Appeals dismissal of the murder charges against the physicians reads much like the Vatican's 1980 Declaration on Euthanasia. Was Clarence Herbert obliged to undergo this treatment? An assessment had to be made of the proportionate benefit and burden that the patient himself would feel from it. Did Herbert speak to the issue? Yes he did. He said, "I don't want it." In the court's view, since Herbert had declared he would not want medical interventions to sustain him in an unconscious state, he had no obligation to undergo them; thus, the physician had no duty to provide them. The court ruled that the "benefits and burdens [of medical nutrition and hydration] ought to be evaluated in the same manner as any other medical procedure," i.e., on "whether the proposed treatment is proportionate or disproportionate in terms of the benefits to be gained versus the burdens caused." It found the removal of Herbert's feeding tube was not "murder" but an acceptable medical practice.

I LEARNED about death from my grandmother. When I was six years old, my grandfather was dying and so my grandmother brought the family in to kiss him goodbye, because now he was going to heaven. With all of us gathered at Grandpa's bedside, a priest came to the house to administer the Last Rites as preparation for his going home to God.

Several years later, I observed how my grandmother took care of an elderly sister, Aunt Moll, after she had a stroke. Nana bathed her, read to her, and fed her. As Aunt Moll grew weaker, Nana gave her sips of soup. As she grew weaker still, little sips of tea. If into that scene had come a doctor who said, "Mrs. Nolan, we can take this simple flexible tube and put it right down Aunt Moll's nose and feed her Isocal"—what would my grandmother have said? She'd have said, "Glory be to God, Doctor, have you lost your senses? The poor woman's dying." Then she'd ask the right question: "And what is your tube going to do for that?"

Did my grandmother starve her sister to death out of ignorance or malice? Neither. She understood that Aunt Moll's earthly journey was ending and God was at last calling her home. And who are we to impede God's plan?

John J. Paris, SJ, is the Walsh Professor of Bioethics at Boston College. He has served as a consultant and expert witness in dozens of court cases centering on end-of-life issues.

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THE CLINICAL EXPERIENCE
By Jon D. Fuller MD, SJ

Medical experts consistently held to a diagnosis for Terri Schiavo of persistent vegetative state (PVS). In this condition, the higher functions of thought, memory, imagination, speech, pain sensation, and voluntary motor movement were lost, as a result of destruction of the cerebral cortex. The midbrain and brain stem, which regulate so-called "vegetative" or maintenance functions such as blood pressure, temperature, breathing, and heart rate, continued to function, explaining how this patient was able to survive for 15 years as long as she received artificial nutrition and hydration.

The prognosis for PVS depends to some degree on the cause. In Schiavo's case, damage resulted from a loss of oxygen due to decreased blood flow. The American Academy of Neurology, in an oft-cited report on the care of PVS patients by its Ethics and Humanities Subcommittee, holds that in such circumstances a diagnosis of PVS "can usually be made with a high degree of medical certainty . . . after a period of one to three months." Published in 1989 in the journal Neurology, the academy's position remains unchanged.

Because a diagnosis of PVS requires the passage of time for the condition to be viewed as "reliably permanent," it is "appropriate," says the academy, that physicians be "aggressive" in providing nutrition and hydration for as long as it takes the patient's diagnosis to be clarified. However, once a diagnosis of PVS is established, the academy maintains that "medical provision of artificial nutrition and hydration [offers] no benefit." Moreover, as with all medical interventions, when a treatment "fails to promote the patient's well-being, there is no longer an ethical obligation to provide it."

The academy's position is that there is no "major medical or ethical distinction between the withholding and withdrawal of medical treatment." To believe otherwise "belies common sense and good medical practice." But the subcommittee's report acknowledges that it may take family members some time to accept the diagnosis and prognosis of PVS. Clinical experience also teaches this. From a psychological point of view, withdrawing a treatment can be more difficult for loved ones than never offering a therapy in the first place.

With this understanding, what then is appropriate end-of-life therapy for a patient with PVS? Over the last several decades, caregivers in the United States have increasingly focused on hospice care, whether provided in an institution (as in Schiavo's case) or in the home. The focus is on comfort, attending to such concerns as preventing bedsores. When patients can no longer swallow, hydration and nutrition are usually not offered—I have not seen these employed during 22 years of hospice work. Clinical experience suggests that such patients do not experience discomfort from dehydration or from lack of nutrition.

THE TREMENDOUS pressure applied to maintain artificial nutrition and hydration for Terri Schiavo is cause for concern. I fear that we have become so skilled at offering technological interventions to extend life that we have now become adorers and worshippers at the altar of biologism, desiring to extend life no matter the quality of that life or the burden of that care. We seem to be losing the capacity to acknowledge death as a friend, as a natural part of our lives, about which there's nothing wrong or shameful.

I've often thought about the capacity that humans have had for tens of thousands of years to attend to their dying loved ones, and one criterion that makes sense to me for what is appropriate care at the end of life is this: What can you do in a cave? In a cave you can hold people, you can rock them, you can sing to them, you can bathe them, you can provide care to prevent drying of the mouth and lips, and you can give pain medications that do not have to be swallowed. These are wonderful things. It would be a tremendous loss to the human community were we not to allow death to be viewed by our families as a wholesome experience and as an integral part of our lives, because it is all of our futures.

Jon D. Fuller MD, SJ, is a physician staff member of the Center for HIV/AIDS Care and Research at Boston Medical Center, and an associate professor of medicine at the Boston University School of Medicine.

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JUDGMENT CALL
By Lisa Sowle Cahill

Is life when it is prolonged in a persistent vegetative state a benefit, or is it a burden?

Instead of addressing that fundamental question directly, we have chosen in this country to focus on the means—are the means natural, say, or artificial? High-tech or low-tech? And that's not really the issue. We can't settle the question by classifying the intervention. So how do we do it? For me, the Church document that most clearly defines the issue is the Vatican Declaration on Euthanasia, published in 1980. It forms the basis of subsequent Catholic ethical and religious directives, and it has never been retracted; it remains the operative document. The declaration says:

"One cannot impose on anyone the obligation to have recourse to a technique which is already in use but which carries a risk or is burdensome. Such a refusal is not the equivalent of suicide; on the contrary, it should be considered as an acceptance of the human condition, or a wish to avoid the application of a medical procedure disproportionate to the results that can be expected, or a desire not to impose excessive expense on the family or the community."

There it is. When the natural function of the person can no longer supply the basic requirements of survival, the question is, do you use an artificial means to supply them? And the answer is, only if it's not burdensome and it's useful.

The best interest of the patient should control this decision. It was arguable in the case of Terri Schiavo that taking away her feeding tube, under the condition of long-abiding PVS, was in her best interest, that to be maintained alive in her state was burdensome. It was a judgment call, and I ask us all to reflect, in our own lives and for our own families, on the decisions we would be open to.

Who should decide? The Catholic tradition says it should be the patient first, in consultation with family and medical providers. The biggest tragedy in Terri Schiavo's case was that those around her became so divided. The first substitute for the patient, if she hasn't left a clear indication, is her next of kin, her spouse. Of course, in Schiavo's case, the parents were very involved in her care. It is too bad that they weren't able to accept their role or to agree with the husband and reach some sort of mediation. Perhaps more or better pastoral care and counseling would have helped.

There's an idea—more present in law and public discourse than in ethics—that the patient's choice trumps all. Two problems arise from that perspective: You don't always get a clear indication of a choice. And sometimes people make horrible choices. They place unreasonable demands on medical personnel, or they refuse to undergo treatment—a feeding tube, a ventilator—that would do them good if they submitted to it for a short time. Catholic tradition has always allowed for the judgment call. The question is, what is in a patient's best interests, objectively speaking—as far as we can ascertain that—taking into account indications that she may have given? A living will is relevant, but it's not definitive.

DANGERS LIE IN all directions. Among conservatives, there's a misconception that we can protect life best by simply saying that all means of care that can prolong life, no matter what a patient's condition, are ordinary means and therefore mandatory. Blurring the distinction between what's extraordinary and what is not has led, I think, to a phenomenon we're beginning to see now, which is a backlash movement in favor of physician-assisted suicide. People are losing trust that when they get into a terminal circumstance a reasonable decision will be made for them.

They fear being left on artificial nutrition forever.

On the other side—among those who consider use of feeding tubes inappropriate when a patient will never regain consciousness—there are dangers too. There is a valid fear of a utilitarian approach that could lead to discounting the worth and interests of individuals who can't speak up for themselves. This has come out in the way people in the disability rights movement have jumped into the public debate over Terri Schiavo to say they were not comfortable with the denial of what they considered ordinary care to this woman.

If we defend taking away the feeding tube, it cannot be because the quality of the patient's life isn't regarded as productive or socially useful. It has to be on the basis of her best interest. Is her welfare really served by continuing in this condition?

There's a final danger that I will mention. Both sides fixate on whether to provide high-tech medical care, which normalizes it as a way to handle illness and death. We're forgetting the 45 million people in this country with no health insurance; we're forgetting people in other parts of the world who don't have even basic medical care; we're forgetting about our national obligation, which we've not met, to the global fund to fight AIDS, malaria, and tuberculosis. What is the bigger picture for health resources and humane care? The dangers as we focus on end-of-life issues are not necessarily the ones that we immediately perceive.

Lisa Sowle Cahill is the J. Donald Monan Professor of Theology at Boston College and a past president of the Catholic Theological Society of America. She is the editor of Genetics, Theology, and Ethics: An Interdisciplinary Conversation (2005).

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