International Catholic University
The focus of this lecture is care for the dying in this the twenty-first century. It will start with an observation about the advances of the contemporary period. It will then move to a discussion of the contemporary medical ethical legal issues. It will conclude with a reflection on the Christian understanding of death and a response to the medical-ethical-legal issues from that understanding.
First the observation: Dying is a natural process and death is its end. Human beings are made of corruptible matter which inevitably disintegrates. It is possible to hold this disintegration in abeyance, but not forever. For most of the history of humanity, death and dying were everywhere. Men, women, and children died and there was little that anyone could do about it. Pregnancy and childbirth had high rates of mortality and morbidity; death in infancy was common; malnourishment, disease, famine, starvation took their toll and life expectancy reached hardly beyond a few decades. The social constructs surrounding death were simple. People died at home surrounded by family and attended by clergy. Medicine, with its limited arsenal of tools, stepped aside.
In modern history, really only the last sixty or so years, death has been held in abeyance by the marvelous advances first of antibiotics, and then by increasingly sophisticated technology, by breathing machines, by feeding tubes, by transplantation expertise made possible by immuno-suppressant drugs, and now by the possibility of tinkering with the building codes and signals of life, the genes. Death when it occurs has become an affair of technology and of medical specialists. It is viewed somehow as a failure for medicine and technology. Death has been far removed from the home, family, and clergy into the hospital. For many, death is achieved . . . only when the battle is called to a halt . . . in an arena surrounded by medical personnel and machines.
Human satisfaction with this new technology was short-lived. Human beings are no longer happy with this new high tech construct. The lingering and litigated death of folks like Karen Ann Quinlan, of Nancy Cruzan, and of others . . . some in our own families . . . caused us to reappraise this technological construct. While we still want to acknowledge that technology is great, we also want to acknowledge that sometimes technology is not what we need. Sometimes technology does not serve the human good . . . technology used to prolong dying when the downward spiraling of the dying process has been entered and when dying is imminent seems not to serve the human good. So we've seen three phases in the human response to dying and the transition to each of the phases was propelled by human desires. The passage from the first to the second was fueled by the need and the desire for more medicine; the transition from the second to the third was propelled by the need and the desire for better medicine; we are now in the third phase and we know that what we need is more than medicine, but we do not yet know what the "more" is.
So now we are searching for a new construct. We have a vacuum. We've tried a few things. Some have been successful and some have not. The Patient Self-Determination Act is now law. It allows patients to write advance directives to be used when they are terminally ill and incompetent, and it requires hospitals to put into place procedures for recording and storing and making available the advance directives. And it was lauded on many fronts. The Patient Self-Determination Act and its offspring -- advance directives -- have created as many problems as they have solved. And both have caused a great deal of confusion. Some attempts have been made to reduce the physician to a technician who serves the will of the patient who, almost without exception, is untrained in the learned art of medicine. Furthermore the Patient Self-Determination Act seems to canonize the "right to choose" without asking what is chosen and what is the justification for what is chosen. It focuses on choice as controlling rather than on "obligation to choose rightly and wisely." In essence it delivers the practice of medicine over to choices made by sick amateurs, at best.
In this vacuum, a variety of remedies have been offered. The proposed remedies stretch along a line of options from one distant point of physician-assisted suicide to a far opposite point of hospice care. Physician-assisted suicide has entered as a possible remedy to the restraining of death by technology. It offers a guarantee of death, with the assistance of the medical profession, as an antidote to the technological prolongation of dying. And there have been a variety of initiatives in developed western nations to accord this remedy the sanction of law.
In this vacuum, too, comes the hospice movement. The hospice movement has as its central principle: "Do nothing which hastens death and do nothing which prolongs dying." At its best the hospice movement offers care, comfort care, and company to the dying. The problem with the hospice movement is that it takes time and enduring care, which require patience and commitment, and we are not a patient people.
The philosophical arguments that have been put forth in favor of physician-assisted suicide are powerful and they are interwoven with the call for compassion. Compassion is a rich human emotion which allows us to share in the sorrow of each other and binds us in solidarity with each other as we struggle through the vicissitudes of life. But compassion as a motive for action it is only one element in the determination of the integral goodness of an act. The heart must be informed by reason and reason must examine carefully the adequacy of the motive, the object of the act, the circumstances, and the consequences. Recall Lifton's account in The Nazi Doctors of compassion as the moving force for the medically encouraged and authorized killing of handicapped children, protected by the authority of the state and with their parents' consent. These were children whose lives were described as having existence but not life. Their compassionate killing was, in the words of Leo Alexander, "a small beginning" and the killing quickly progressed to the compassionate killing of impaired adults . . . and eventually to the killing of 12 million.
With these observations in mind, let us turn to the question of physician-assisted suicide as an aid to the dying. The debate on physician-assisted suicide is really a matrix framed by a set of arguments -- legal, philosophical, medical, practical, and economic. The legal arguments in the United States center on the protection found in the 14th Amendment to the Constitution, specifically in the "substantive" due process clause and the equal protection clause, and on several Supreme Court decisions, namely Cruzan and Planned Parenthood v. Casey, and on common law notions of freedom from unconsented touching. The central philosophical notion is that of autonomy. In medicine itself perturbations are caused by the nutrition/hydration debate, by the distinction between withholding and withdrawal of treatment, by the issue of pain management, by the confusion of the role of the profession, and by the fear of litigation which taints all of these. The prohibitive cost of health care at the end of life is a legitimate pressing concern for families as well as for society.
The examination of the legal, philosophical, and medical issues follows. The legal issues in the debate in the United States are similar to the issues that are central to the debate in other developed nations. The legal issues focus on such concepts as liberty and equality. If to liberty and equality are added the emotion of compassion, there is indeed a powerful set of arguments brought forth to defend the right to medical assistance in suicide. Closer scrutiny of those arguments as they are claimed to be embedded in the provisions of the 14th Amendment of the Constitution is an appropriate starting point to examine the philosophical notions which are easily expanded to the general argument. The fourteenth Amendment was added to the Constitution in 1868, in the wake of the American Civil War, to guarantee to former slaves the rights accorded to all citizens. The two critical clauses of the amendment, for our purposes are these: "nor shall any state deprive any person of life, liberty, or property, without due process of law; nor deny to any person within its jurisdiction the equal protections of the laws." The first clause under consideration has been designated the "substantive due process clause" inasmuch as there has been an attempt to render substantively the notion of liberty. What is it that citizens are at liberty to do? What, if any, are the limits on liberty? Specifically in regard to the question of medical assistance in suicide the question is: is the notion of liberty broad enough to encompass the assistance by physicians or other medical personnel in accomplishing suicide for a sick person. A recent decision of the United States Supreme Court, Planned Parenthood v. Casey (1992) described its understanding of that liberty as it applies in reproductive decisions in these terms, "the right to define one's own concept of existence, of meaning, of the universe, and of the mystery of human life." Proponents of the right to assistance in suicide have attempted to make this the understanding of liberty to be applicable in the pursuit of their goals. Is that the correct understanding of liberty and can it be extended to include the liberty to end human life? Scrutiny of the passage shows it to be so broad as to be without limit . . . open to any choice. A subsequent Supreme Court decision made short work of what has now been named with considerable derision "the mystery passage." The liberty that is meant in the constitution is the notion of ordered liberty, liberty that is balanced by rights and duties of others and by our rights and duties. And if there be any room for commonsense in the debate, then the observation that liberty cannot be exercised without life, has meaning.
Against the right to assistance in suicide by medical personnel as a liberty right, there are asserted the rights and obligations of the state. The state, in the exercise of its parens patriae role, articulates at least six obligations that fall within its province. They are the preservation of life of the person, the discouragement of suicide, third party interests, the integrity of the medical profession, protection of the ill from untoward pressure of others, and protection of the citizens of the nation from abuses observed in other nations. The obligation of the state to preserve the lives of its citizens is one of its fundamental duties of the state. In fulfillment of that obligation to defend life, the state has in place a range of protections from prohibitions against killing to welfare laws to sustain life for those who cannot care for themselves. The reciprocal obligation of the citizen and of the polity to live and to protect life is as ancient as the Politics of Aristotle and as new as the constitution of any emerging nation. Life is the fundamental right without the exercise of the right to life, the exercise of any other right -- liberty or property or citizen -- is impossible.
The state takes seriously its role in the protection of citizens against suicide. The reason for this concern on the part of the state is that careful study of suicide, in such reports as the New State Task Force Report, reveals suicide to be an act of desperation most often committed by people who are suffering from treatable clinical depression. The Task Force, having come to the realization that suicide is most often not a rational act, reached the conclusion that medical professionals ought not to facilitate the act. Now it is true that suicide was decriminalized in 1970. Nonetheless, the decriminalization of suicide was not meant to and does not legalize the act of suicide. Recognition of the illness of the person committing suicide, the extravagance of decreeing criminal penalties for a sick person who committed suicide, and concern for the consolation of grieving family members moved the law to decriminalize suicide. The expectation that attended the decriminalization was that the medical community, along with the cooperation of appropriate social and religious agencies, would find medical, social, and religious interventions to care for depressed or mentally ill patients to protect them from the harm of suicide.
Third party interests to be protected by the state include the interests of children or spouses who might be financially or emotionally dependent on the person contemplating suicide. Third party pressures on a person contemplating suicide may be the pressure of family members to balance needs and interests such as care of the sick family member versus the education of a child, the pressure of poverty, the pressure of dependence including the stigma of loss of function, the pressure of being a member of a minority, the pressure of being a woman, and the pressure experienced by the authority of a medical professional whose suggestion that life be ended is perceived by the patient as a prescription. Inasmuch as these pressures interfere with the exercise of informed consent by inhibiting freedom, the state prudentially expresses a concern about these potential constraints.
The concern of the state for the integrity of the medical profession is an important state interest. The medical profession has in its origin and in its commitment to serve the life and health of patients. Affirmation of this dedication is clearly articulated in the AMA Code of Medical Ethics (A-02 Edition) which says, "[p]hysician-assisted suicide is fundamentally incompatible with the physician's role as healer, would be difficult or impossible to control, and would pose serious societal risk."
The observation of practices surrounding death and dying in other nations and polities can be instructive for nations considering the adoption of the new practices. The Netherlands may serve as a course for studying the practice of active euthanasia and assisted suicide by physicians. The practice of euthanasia and physician-assisted suicide has had general acceptance in the Netherlands, despite the fact that both practices were forbidden by law until very recently. This was the progression. In 1984, the Royal Dutch Medical Association issued a set of guidelines for the practice of euthanasia. The guidelines require four conditions be met before euthanasia be performed. They are: (1) the patient must be a mentally competent adult; (2) the patient must request euthanasia voluntarily, consistently and repeatedly over a reasonable time and the request must be documented; (3) the patient must be suffering intolerably, with no prospect of relief, although the disease need not be terminal; and (4) the doctor must consult with another physician not involved in the case. (The combination of the possibility of making a voluntary informed decision and of being in the condition of suffering intolerable pain presents a problem.) The bioethical world has watched the experiment in the Netherlands. Many bioethicists thought that because of the unique nature of the society and culture of the Netherlands, that country might serve as a model for the successful implementation of the medically assisted delivery of death. That assessment changed with the publication of the Remmelink Report. Professor Jan Remmelink was appointed to head a commission to investigate the medical practice of euthanasia. The Remmelink Report presented this data: in 1990, 1.9% of deaths (2,300) were caused by voluntary euthanasia and in 1995, 2.3% (3,100) deaths were caused by voluntary euthanasia; in 1990, 0.3% of deaths (400) occurred from physician-assisted suicide and in 1995 0.4% of deaths (540) occurred from physician-assisted suicide; in 1990, 0.8% of deaths (1000) resulted from non-voluntary euthanasia and in 1995, 0.7% of deaths a (945) resulted from non-voluntary euthanasia. The deaths from non-voluntary euthanasia are startling as is the incremental growth in deaths resulting from voluntary euthanasia and from physician-assisted suicide. Furthermore, with the passage of time the categories for permissible euthanasia have been expanded. In 1994, suffering was expanded to include unbearable mental suffering. In 2001, the practices of euthanasia and physician-assisted suicide were made legal in the Netherlands. A significant addition in the new law is its expansion of euthanasia and physician-assisted suicide to minors between the ages of twelve and sixteen with the consent of parents. The increments in numbers and the categories suggest a slippery slope. The state is exercising due diligence in the performance of its parens patriae role when it factors into its deliberations these worrisome observations.
Let us return to the provisions of the 14th Amendment. The second clause under consideration -- the equal protection clause -- is understood by those who argue for physician-assisted suicide in this way: since the end or object is death, it matters not how death is accomplished. In some, death will be accomplished by the withdrawal of treatment and in others it will be accomplished by a lethal dose of medication. If the withdrawal of treatment is allowed so that death may follow, so too should the dispensation of lethal medication. This, they argue, is to treat the dying equally. This argument fails in an important distinction, namely, that distinction between allowing to die and killing. In the former, death, a natural occurrence, occurs from the underlying pathology or the failure of organ systems. Technology and medical interventions, which no longer serve the good of the person, are withdrawn in order not to prolong the dying process. These technological medical interventions are deemed medically inappropriate or futile -- they do not benefit the person. In the latter instance, the patient is intentionally assisted in self-killing by a profession committed to care, to cure when possible, to cope when cure is not possible, and finally just to care, when that is all that is possible.
If physician-assisted suicide and euthanasia are judged unethical and if the prolongation of the dying process by technological interventions that prolong dying is judged unethical, how then ought dying be accomplished? Professor Gil Meilaender suggests that dying and death are to be approached as neither the greatest evil nor the ultimate good. Dying is natural and death is its end. But death is not the ultimate end of for human life; it is a passage. Hence death is not the ultimate evil. Human life is a gift -- a finite gift to each individual to be lived as a particular gift with hope sustained by faith that surely holds that our end lies in eternal and joyful union with God. So life is to be held and lived as a gift with all its particularities and commitments. The death of any person is the death -- the loss -- of a unique person whose life touched countless others. So death is to be experienced as pain both by the dying and by those who remain. It is right for human beings to mourn death and the losses that are brought on by death. Meilaender reminds us that, "even in the most dignified of deaths, we need to recognize the presence of a hostile power, the 'last enemy' from which Jesus himself shrank, a power that cannot be overcome simply by dying"(Meilaender, 6). Death is not the ultimate good. C.S. Lewis in Miracles suggests the appropriate manner for the Christian to countenance death. Lewis wrote this about differing attitudes toward death:
One is the lofty view, which reached its greater intensity among the Stoics, that Death "doesn't matter," that it is "kind nature's signal for retreat," and that we ought to regard it with indifference. The other is the "natural point of view," . . . that Death is the greatest of evils. . . . . The first idea simply negates, the second simply affirms, our instinct for self-preservation; neither throws any new light on Nature, and Christianity countenances neither. Its doctrine is subtler. On the one hand Death is the triumph of Satan, the punishment of the Fall, and the last enemy . . . . On the other hand, only he who loses his life will save it. We are baptized into the death of Christ, and it is the remedy for the Fall. Death is . . . the thing Christ came to conquer and the means by which he conquered (C.S. Lewis, 129-130).
To walk that fine line requires that there may be no direct killing either by others or by ourself, no assistance in suicide and no prolongation of dying. To do either rejects the gift of life as created life. The exact and powerful conceptual tools of the tradition, such as the distinction of ordinary care and extraordinary care and the principle of double effect, assist understanding and care here and must be applied with resolute firmness. The distinction between ordinary and extraordinary means is explicated in the Religious and Ethical and Directives For Catholic Health Care Institutions. The distinction is the following: "Proportionate [or ordinary] 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" (56). Ordinary means are morally obliging in the preservation of life. Extraordinary 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" (57). A person is permitted, but not obliged, to forgo extraordinary means. Nutrition and hydration, even nutrition and hydration provided by medical means, are generally considered ordinary means of preserving life. However, if nutrition and hydration are not of benefit to the patient, that is they prolong dying or cause pain or the burdens outweigh the benefits, then they are no longer obliging (58). The principle of double effect allows an act which has in its execution two effects, one good and the other bad, as long as only the good effect is intended. In the care of the dying, medicines and treatments are permissible to keep patients as free of pain and suffering as possible, even if the medicine hastens the death by diminishing the respiratory capacity of the dying person. The relief of pain and suffering is the intended effect; the hastening of the dying is the foreseen but unintended effect.
The goodness of life and the goodness of its end must be affirmed. It is, perhaps, in dying that the experience, finally, of human nature as created and radically dependent is affirmed. So what then ought Christians do? We need to acknowledge our finitude and affirm that death is not our end. We shall die and we need to prepare for death. We must live and die in such as way as to model our beliefs -- Jesus experienced sadness in his dying and we shall experience sadness in our own dying. Those who love us will experience sadness in the knowledge of our dying, just as the disciples experienced sadness in the dying of Christ. We should not abandon each other in this. The dying have much to teach the living as they patiently endure dependence and care. And the living may become truly compassionate when they attend as caring people -- to touch, to wash, to anoint, and to be present to the dying.
Fr. Richard McCormick, eminent moral theologian who died in 2000, sketched out a careful path for us. In his words and in his living to the very end, he reminded us frequently that dependency, whether from age or illness, is a call to cling to the power of God. He, when speaking of physician-assisted suicide as a act of isolation and abandonment, said, "[r]ejection of our dependence means ultimately rejection of our interdependence and eventually of our very mortality" (McCormick, 1991, 1133). And when he addressed the issue of cessation of no longer beneficial nutrition and hydration, he reminded us that we, as a people who say we believe in life after death, ought to act as if we actually believe that (McCormick, 1992, 214). He warned us too that failure to attend these distinctions and failure to use the intellectual tools and concepts of the tradition might force the holders of the tradition to flee it.