Terri Schiavo and our Moral Confusion

In thinking about the meaning of the tragedy of Terri Schiavo's life and the decisions it has generated, I spent much of Good Friday reading a number of articles by bioethicists, theologians, and various columnists. The entire time, I was haunted by the title of an essay by Stanley Hauerwas, who has written a lot about the moral nature of our care for the severely mentally retarded and more generally of those whose lives are incomprehensible and (thus?) burdensome to us. In "Must a Patient Be a Person To Be a Patient? Or, My Uncle Charlie Is Not Much of a Person But He Is Still My Uncle Charlie," Hauerwas challenged the conventional framework that guides many debates in bioethics: the definition of what constitutes personhood. According to this framework, to be alive and to be human is not sufficient to make a moral claim for care and protection. One must also be a "person," a status (in both beginning-of-life and end-of-life settings) that is usually defined in terms of capacities for reason and volition. Leon Kass, in Life, Liberty and the Defense of Dignity: The Challenge for Bioethics (Encounter, 2002), observes that the Western tradition of conferring dignity and respect on persons, on "rational beings" capable of "genuine moral agency," has preserved the unique value of human life by distinguishing it from beasts and machines. But, as we are painfully discovering on many issues addressed by bioethicists, it is an inadequate framework, appropriate perhaps for the Hellenistic view of human nature, but not rich enough for the account preserved by Jews and Christians in the account of Creation, and extended by Christians in reflection on the reality of the Incarnation. As Kass notes, "Precisely because it dualistically sets up the concept of 'personhood' in opposition to nature and the body, [this view of human dignity] fails to do justice to the concrete reality of our embodied lives—lives of begetting and belonging no less than of willing and thinking. . . . Precisely because 'personhood' is distinct from our lives as embodied, rooted, connected and aspiring beings, the dignity of rational choice pays no respect at all to the dignity we have through our loves and longings—central aspects of human life understood as a grown togetherness of body and soul. Not all of human dignity consists in reason or freedom." [page 17] Reason and freedom are valued in the Biblical account of human nature. But in the modern, Enlightenment account that has shaped our political institutions and much of our thinking about the contours of caring for one another, reason and freedom are pretty much all there is to a person rightly so called. The modern picture of the human cannot account for our nature as embodied spirits created for and constituted by relationships of love. In his book Bioethics: A Primer for Christians (Eerdmans, 2nd edition 2005), Gilbert Meilaender reflects on how Christian thinking should challenge the common assumptions of our culture about "personhood": "[O]ur personal histories—precisely as histories of embodied spirits—do not require the presence of 'personal' capacities throughout. Our personal histories begin in dependence—first within our mother's womb and then as newborns. Often our life ends in the dependence of old age and the loss of capacities we once had. Personhood is not something we 'have' at some point in this history. Rather, as embodied spirits or inspirited bodies, we are persons throughout the whole of that life. One whom we might baptize, one for whom we might still pray, one for whom the Spirit of Christ may still intercede 'with sighs too deep for words' (Rom. 8:26)—such a one cannot be for us less than a person. Dependence is part of the story of a person's life." [2nd edition, page 6] Meilaender concludes this section of his book with an observation that applies to Terri Schiavo's situation most particularly: "Those human beings who permanently lack certain empowering cognitive capacities—as well as all human beings in stages of life where those powers are absent—are simply the weakest and most needy members of our community. We can care for them and about them only by acknowledging the living bodily presence that they have among us—seeking to discern in their faces the hidden spirit, the call to community that their bodily presence constitutes, and the face of Christ." [ibid.] In an article written for The Weekly Standard and posted online on Good Friday, Eric Cohen, the editor of The New Atlantis, also reflects on moral framework questions. "For all the attention we have paid to the Schiavo case," Cohen insists, "we have asked many of the wrong questions, living as we do on the playing field of modern liberalism." Like Kass and Meilaender, Cohen is unhappy with the liberal idea that volition is the defining characteristic of the human: "[T]he real lesson of the Schiavo case is not that we all need living wills; it is that our dignity does not reside in our will alone, and that it is foolish to believe that the competent person I am now can establish, in advance, how I should be cared for if I become incapacitated and incompetent. The real lesson is that we are not mere creatures of the will: We still possess dignity and rights even when our capacity to make free choices is gone; and we do not possess the right to demand that others treat us as less worthy of care than we really are." Cohen observes that liberalism's celebration of liberty as autonomy, as independence, distorts the meaning of the human and establishes "a set of assumptions about what makes life worth living and thus worth protecting" according to which we regard "incompetence itself as reasonable grounds for assuming that life is not worth living." Cohen thinks that medical ethics organized around the single theme of autonomy is flawed. "[T]he autonomy regime, at its best, prevents the worst abuses—like involuntary euthanasia, where doctors or public officials decide whose life is worth living. But the autonomy regime, even at its best, is deeply inadequate. It is based on a failure to recognize that the human condition involves both giving and needing care, and not always being morally free to decide our own fate." The article is posted online here. In watching and reading the news coverage of Terri Schiavo's case, I can't remember hearing the word "euthanasia" once. And yet it should be clear that by withdrawing food and water from her, she is euthanized, not simply being "allowed to die." I doubt that a parent who withheld food and water from their children, or a warden who withheld food and water from a prisoner, could be excused from culpability on the grounds that they were simply allowing someone to die. In none of these cases, including Terri Schiavo's, is there a dying person, just a dependent one. Two articles from First Things help sort through the issues involved in distinguishing killing from allowing to die. The first, "Always to Care, Never to Kill: A Declaration on Euthanasia," was produced by the Ramsey Colloquium, a group of Jewish and Christian theologians, ethicists, philosophers, and scholars that met periodically to consider questions of ethics, religion, and public life. The statement was prepared at a time when many states were considering laws liberalizing the practice of euthanasia and physician-assisted suicide, and its principal theme was declared quite concisely: "In relating to the sick, the suffering, the incompetent, the disabled, and the dying, we must learn again the wisdom that teaches us always to care, never to kill. Although it may sometimes appear to be an act of compassion, killing is never a means of caring." Later in the declaration, a warning that has relevance to Terri Schiavo's case was offered: "Once we cross the boundary between killing and allowing to die, there will be no turning back. Current proposals would legalize euthanasia only for the terminally ill. But the logic of the argument—and its practical consequences—will inevitably push us further. Arguments for euthanasia usually appeal to our supposed right of self-determination and to the desirability of relieving suffering. If a right to euthanasia is grounded in self-determination, it cannot reasonably be limited to the terminally ill. If people have a right to die, why must they wait until they are actually dying before they are permitted to exercise that right? Similarly, if the warrant for euthanasia is to relieve suffering, why should we be able to relieve the suffering only of those who are self-determining and competent to give their consent? Why not euthanasia for the suffering who can no longer speak for themselves? To ask such questions is to expose the logical incoherence and the fragile arbitrariness of suggested 'limits' in proposals for legalized euthanasia." The article is available online here. Finally, the August/September 2004 issue of First Things featured an exchange between Robert D. Orr (director of Ethics for Fletcher Allen Health Care and Professor of Family Medicine at the University of Vermont College of Medicine) and Gilbert Meilaender. The exchange dealt explicitly with the question of the use of feeding tubes for patients in a "permanent vegetative state." Orr and Meilaender both agree that such patients (like Terri Schiavo) are not dying. Given that fact, Meilaender discusses this question: "Under what circumstances may we rightly refuse a life-prolonging treatment without supposing that, in making this decision, we are doing the forbidden deed of choosing or aiming at death?" "The answer of our medical-moral tradition has been the following: we may refuse treatments that are either useless or excessively burdensome. In doing so, we choose not death, but one among several possible lives open to us. We do not choose to die, but, rather, how to live, even if while dying, even if a shorter life than some other lives that are still available for our choosing. What we take aim at then, what we refuse, is not life but treatment—treatment that is either useless for a particular patient or excessively burdensome for that patient. Especially for patients who are irretrievably into the dying process, almost all treatments will have become useless. In refusing them, one is not choosing death but choosing life without a now useless form of treatment. But even for patients who are not near death, who might live for a considerably longer time, excessively burdensome treatments may also be refused. Here again, one takes aim at the burdensome treatment, not at life. One person may choose a life that is longer but carries with it considerable burden of treatment. Another may choose a life that is shorter but carries with it less burden of treatment. Each, however, chooses life. Neither aims at death. "It is essential to emphasize that these criteria refer to treatments, not to lives. We may rightly reject a treatment that is useless. But if I decide not to treat because I think a person's life is useless, then I am taking aim not at the treatment but at the life. Rather than asking, 'What if anything can I do that will benefit the life this patient has?' I am asking, 'Is it a benefit to have such a life?' If the latter is my question, and if I decide not to treat, it should be clear that it is the life at which I take aim. Likewise, we may reject a treatment on grounds of excessive burden. But if I decide not to treat because it seems a burden just to have the life this person has, then I am taking aim not at the burdensome treatment but at the life. Hence, in deciding whether it is appropriate and permissible to withhold or withdraw treatment—whether, even if life is thereby shortened, we are aiming only at the treatment and not at the life—we have to ask ourselves whether the treatment under consideration is, for this patient, either useless or excessively burdensome. "Is the treatment useless? Not, let us be clear, is the life a useless one to have, but is the treatment useless? As Dr. Orr notes—quite rightly, I think—patients 'can live in this permanent vegetative state for many years.' So feeding may preserve for years the life of this living human being. Are we certain we want to call that useless? We are, of course, tempted to say that, in deciding not to feed, we are simply withdrawing treatment and letting these patients die. Yet, as Dr. Orr also notes, these patients 'are not clearly dying.' And, despite the sloppy way we sometimes talk about these matters, you cannot 'let die' a person who is not dying. It is hard, therefore, to make the case for treatment withdrawal in these cases on the ground of uselessness. We may use those words, but it is more likely that our target is a (supposed) useless life and not a useless treatment. And if that is our aim, we had better rethink it promptly."

Formatting!

thoughts on

Terri Schiavo and our Moral Confusion

In thinking about the meaning of the tragedy of Terri Schiavo's life and the decisions it has generated, I spent much of Good Friday reading a number of articles by bioethicists, theologians, and various columnists. The entire time, I was haunted by the title of an essay by Stanley Hauerwas, who has written a lot about the moral nature of our care for the severely mentally retarded and more generally of those whose lives are incomprehensible and (thus?) burdensome to us. In "Must a Patient Be a Person To Be a Patient? Or, My Uncle Charlie Is Not Much of a Person But He Is Still My Uncle Charlie," Hauerwas challenged the conventional framework that guides many debates in bioethics: the definition of what constitutes personhood. According to this framework, to be alive and to be human is not sufficient to make a moral claim for care and protection. One must also be a "person," a status (in both beginning-of-life and end-of-life settings) that is usually defined in terms of capacities for reason and volition.

Leon Kass, in Life, Liberty and the Defense of Dignity: The Challenge for Bioethics (Encounter, 2002), observes that the Western tradition of conferring dignity and respect on persons, on "rational beings" capable of "genuine moral agency," has preserved the unique value of human life by distinguishing it from beasts and machines. But, as we are painfully discovering on many issues addressed by bioethicists, it is an inadequate framework, appropriate perhaps for the Hellenistic view of human nature, but not rich enough for the account preserved by Jews and Christians in the account of Creation, and extended by Christians in reflection on the reality of the Incarnation. As Kass notes, "Precisely because it dualistically sets up the concept of 'personhood' in opposition to nature and the body, [this view of human dignity] fails to do justice to the concrete reality of our embodied lives—lives of begetting and belonging no less than of willing and thinking. . . . Precisely because 'personhood' is distinct from our lives as embodied, rooted, connected and aspiring beings, the dignity of rational choice pays no respect at all to the dignity we have through our loves and longings—central aspects of human life understood as a grown togetherness of body and soul. Not all of human dignity consists in reason or freedom." [page 17]

Reason and freedom are valued in the Biblical account of human nature. But in the modern, Enlightenment account that has shaped our political institutions and much of our thinking about the contours of caring for one another, reason and freedom are pretty much all there is to a person rightly so called. The modern picture of the human cannot account for our nature as embodied spirits created for and constituted by relationships of love.

In his book Bioethics: A Primer for Christians (Eerdmans, 2nd edition 2005), Gilbert Meilaender reflects on how Christian thinking should challenge the common assumptions of our culture about "personhood": "[O]ur personal histories—precisely as histories of embodied spirits—do not require the presence of 'personal' capacities throughout. Our personal histories begin in dependence—first within our mother's womb and then as newborns. Often our life ends in the dependence of old age and the loss of capacities we once had. Personhood is not something we 'have' at some point in this history. Rather, as embodied spirits or inspirited bodies, we are persons throughout the whole of that life. One whom we might baptize, one for whom we might still pray, one for whom the Spirit of Christ may still intercede 'with sighs too deep for words' (Rom. 8:26)—such a one cannot be for us less than a person. Dependence is part of the story of a person's life." [2nd edition, page 6]

Meilaender concludes this section of his book with an observation that applies to Terri Schiavo's situation most particularly: "Those human beings who permanently lack certain empowering cognitive capacities—as well as all human beings in stages of life where those powers are absent—are simply the weakest and most needy members of our community. We can care for them and about them only by acknowledging the living bodily presence that they have among us—seeking to discern in their faces the hidden spirit, the call to community that their bodily presence constitutes, and the face of Christ." [ibid.]

In an article written for The Weekly Standard and posted online on Good Friday, Eric Cohen, the editor of The New Atlantis, also reflects on moral framework questions. "For all the attention we have paid to the Schiavo case," Cohen insists, "we have asked many of the wrong questions, living as we do on the playing field of modern liberalism."

Like Kass and Meilaender, Cohen is unhappy with the liberal idea that volition is the defining characteristic of the human: "[T]he real lesson of the Schiavo case is not that we all need living wills; it is that our dignity does not reside in our will alone, and that it is foolish to believe that the competent person I am now can establish, in advance, how I should be cared for if I become incapacitated and incompetent. The real lesson is that we are not mere creatures of the will: We still possess dignity and rights even when our capacity to make free choices is gone; and we do not possess the right to demand that others treat us as less worthy of care than we really are."

Cohen observes that liberalism's celebration of liberty as autonomy, as independence, distorts the meaning of the human and establishes "a set of assumptions about what makes life worth living and thus worth protecting" according to which we regard "incompetence itself as reasonable grounds for assuming that life is not worth living."

Cohen thinks that medical ethics organized around the single theme of autonomy is flawed. "[T]he autonomy regime, at its best, prevents the worst abuses—like involuntary euthanasia, where doctors or public officials decide whose life is worth living. But the autonomy regime, even at its best, is deeply inadequate. It is based on a failure to recognize that the human condition involves both giving and needing care, and not always being morally free to decide our own fate."

The article is posted online here.

In watching and reading the news coverage of Terri Schiavo's case, I can't remember hearing the word "euthanasia" once. And yet it should be clear that by withdrawing food and water from her, she is euthanized, not simply being "allowed to die." I doubt that a parent who withheld food and water from their children, or a warden who withheld food and water from a prisoner, could be excused from culpability on the grounds that they were simply allowing someone to die. In none of these cases, including Terri Schiavo's, is there a dying person, just a dependent one.

Two articles from First Things help sort through the issues involved in distinguishing killing from allowing to die. The first, "Always to Care, Never to Kill: A Declaration on Euthanasia," was produced by the Ramsey Colloquium, a group of Jewish and Christian theologians, ethicists, philosophers, and scholars that met periodically to consider questions of ethics, religion, and public life. The statement was prepared at a time when many states were considering laws liberalizing the practice of euthanasia and physician-assisted suicide, and its principal theme was declared quite concisely: "In relating to the sick, the suffering, the incompetent, the disabled, and the dying, we must learn again the wisdom that teaches us always to care, never to kill. Although it may sometimes appear to be an act of compassion, killing is never a means of caring."

Later in the declaration, a warning that has relevance to Terri Schiavo's case was offered: "Once we cross the boundary between killing and allowing to die, there will be no turning back. Current proposals would legalize euthanasia only for the terminally ill. But the logic of the argument—and its practical consequences—will inevitably push us further. Arguments for euthanasia usually appeal to our supposed right of self-determination and to the desirability of relieving suffering. If a right to euthanasia is grounded in self-determination, it cannot reasonably be limited to the terminally ill. If people have a right to die, why must they wait until they are actually dying before they are permitted to exercise that right? Similarly, if the warrant for euthanasia is to relieve suffering, why should we be able to relieve the suffering only of those who are self-determining and competent to give their consent? Why not euthanasia for the suffering who can no longer speak for themselves? To ask such questions is to expose the logical incoherence and the fragile arbitrariness of suggested 'limits' in proposals for legalized euthanasia."

The article is available online here.

Finally, the August/September 2004 issue of First Things featured an exchange between Robert D. Orr (director of Ethics for Fletcher Allen Health Care and Professor of Family Medicine at the University of Vermont College of Medicine) and Gilbert Meilaender. The exchange dealt explicitly with the question of the use of feeding tubes for patients in a "permanent vegetative state." Orr and Meilaender both agree that such patients (like Terri Schiavo) are not dying. Given that fact, Meilaender discusses this question: "Under what circumstances may we rightly refuse a life-prolonging treatment without supposing that, in making this decision, we are doing the forbidden deed of choosing or aiming at death?"

"The answer of our medical-moral tradition has been the following: we may refuse treatments that are either useless or excessively burdensome. In doing so, we choose not death, but one among several possible lives open to us. We do not choose to die, but, rather, how to live, even if while dying, even if a shorter life than some other lives that are still available for our choosing. What we take aim at then, what we refuse, is not life but treatment—treatment that is either useless for a particular patient or excessively burdensome for that patient. Especially for patients who are irretrievably into the dying process, almost all treatments will have become useless. In refusing them, one is not choosing death but choosing life without a now useless form of treatment. But even for patients who are not near death, who might live for a considerably longer time, excessively burdensome treatments may also be refused. Here again, one takes aim at the burdensome treatment, not at life. One person may choose a life that is longer but carries with it considerable burden of treatment. Another may choose a life that is shorter but carries with it less burden of treatment. Each, however, chooses life. Neither aims at death.

"It is essential to emphasize that these criteria refer to treatments, not to lives. We may rightly reject a treatment that is useless. But if I decide not to treat because I think a person's life is useless, then I am taking aim not at the treatment but at the life. Rather than asking, 'What if anything can I do that will benefit the life this patient has?' I am asking, 'Is it a benefit to have such a life?' If the latter is my question, and if I decide not to treat, it should be clear that it is the life at which I take aim. Likewise, we may reject a treatment on grounds of excessive burden. But if I decide not to treat because it seems a burden just to have the life this person has, then I am taking aim not at the burdensome treatment but at the life. Hence, in deciding whether it is appropriate and permissible to withhold or withdraw treatment—whether, even if life is thereby shortened, we are aiming only at the treatment and not at the life—we have to ask ourselves whether the treatment under consideration is, for this patient, either useless or excessively burdensome.

"Is the treatment useless? Not, let us be clear, is the life a useless one to have, but is the treatment useless? As Dr. Orr notes—quite rightly, I think—patients 'can live in this permanent vegetative state for many years.' So feeding may preserve for years the life of this living human being. Are we certain we want to call that useless? We are, of course, tempted to say that, in deciding not to feed, we are simply withdrawing treatment and letting these patients die. Yet, as Dr. Orr also notes, these patients 'are not clearly dying.' And, despite the sloppy way we sometimes talk about these matters, you cannot 'let die' a person who is not dying. It is hard, therefore, to make the case for treatment withdrawal in these cases on the ground of uselessness. We may use those words, but it is more likely that our target is a (supposed) useless life and not a useless treatment. And if that is our aim, we had better rethink it promptly."
The article is available online here. [Posted March 2005, KAM]

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