Health Care, Death, and Dying: Medical, Moral, and Pastoral Principles for the Elderly and Their Families

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1 Health Care, Death, and Dying: Medical, Moral, and Pastoral Principles for the Elderly and Their Families Most Reverend William H. Bullock Bishop of Madison Published in Origins, 1993 Easter Sunday, April 13, 1994 Reissued on January 10, 2000 My Dear People: Learning to live and learning to die are so intimately connected that we can never fully do one without the other. We learn to die by the way we live and we learn to live by the reality that death comes to everyone. With this in mind I address this pastoral to my fellow Catholic Christians of our Diocese of Madison and to all men and women of good will. Few of us will die natural deaths at home slipping off in sleep, but rather many of us will die what are called managed deaths, where decisions about life support systems must be made in hospitals, rest homes or care centers. This topic of health care in our final days is of growing importance to the graying population of Wisconsin and all of us. Complex issues are involved: the treatment of dying patients, the provision of nutrition and fluids to dying or comatose patients and public policy in these matters. Renewed attention to death and dying is demanded by new publications advising methods of suicide by instances in which family members or physicians have killed terminally ill persons or have helped them kill themselves. Competent patients are always the proper decision makers about their own treatment, and their decisions are governed by relevant norms concerning what is right and wrong. These same moral norms govern the decisions of families, caretakers and medical staff when a patient is not competent. Following our Judeo-Christian principles, I offer the guidance of the Church for both patients and caretakers who sincerely seek the will of God in matters of life and death. I invite you to give this letter a careful reading. I pray that you will find it helpful in your life. You are an important person and your life is of the utmost importance to me. Grace, Mercy and Peace, Most Reverend William H. Bullock Bishop of Madison

2 Outline of Pastoral I. Clarifying the Issue A. Mercy killing and suicide B. Right to life II. III. IV. A. What euthanasia is B. Extraordinary vs. ordinary means Quality of Life A. Presupposes right to life for everyone B. No right to judge quality of life Burden vs. Benefit A. How benefit can be measured B. How burden can be measured V. Public Policy A. Laws which address the question B. Principles to be upheld VI. Conclusion

3 Moral Provisions Regarding Euthanasia and Medical Assistance to the Dying I. Clarifying the Issue When families or individuals are faced with an agonizing question concerning the death or treatment of a person who is dying, comatose, in a permanent vegetative state (PVS) or disabled, emotions often cloud the ability to reason. Propaganda favoring euthanasia and suicide evokes powerful emotions that many people find they simply cannot ignore. But this propaganda systematically overlooks the fact that suicide remains intentional selfdestruction and that euthanasia is still the intentional killing of innocent persons. The harshness of homicide is not softened by changing the word to mercy killing. Nor is the horror of suicide obscured by simply calling it death by choice. A superficial world view judges life s value by the degree of pleasure to be enjoyed or worldly success to be attained. Equally alluring is an individualism that tends to exalt personal freedom as an absolute value, so that authentic freedom is equated with mere permission to do whatever one wishes. On the contrary, the alleged right to die is a fundamental abuse of human freedom. Life is the fundamental condition for a person s exercise of other rights and of all other goods. If we deliberately destroy life, we undermine respect for those other rights and goals, and even freedom itself. Questions for Discussion: 1. What are some examples of the deliberate destruction of life that have resulted in undermining respect for a person s rights, goals and freedom? 2. How have these examples influenced the climate and acceptance of euthanasia?

4 II. Moral Principles Form Our Conscience For those who seek a reasonable basis on which to form their consciences according to basic Christian morality, I offer the following moral principles: 1. Our Jewish roots affirm that each human person has his or her origin in God, having been created in God s very own image and likeness. As Christians, we believe that the resurrection of Jesus Christ from the dead has radically changed the destiny of the human person. Each of us is entrusted by God with this gift of life, but we cannot claim absolute dominion over it. Death is not the ultimate enemy, but a physical evil that we must never deliberately bring about. For the Christian, the elements of the Paschal Mystery, suffering, death and resurrection, have special meaning because of their redemptive power. The events of suffering, death and resurrection through faith are joined to the suffering, death and resurrection of Jesus. Death is an event which terminates earthly existence and which fulfills it. i 2. Our consistent life ethic affirms the right to life for all persons from the moment of conception to the moment of natural death. These rights uphold the dignity of each human person a dignity stemming from our origin and destiny in God. Therefore, the Church condemns all direct attacks on human life at any of its stages. 3. The Catholic Church defines euthanasia as as action or an omission which of itself or by intention causes death, in order that all suffering may in this way be eliminated ; euthanasia s terms of reference are to be found in the intention of the will and in the method used. ii It is an attack on life which no one has a right to make or request, and which no government or any other human authority can legitimately recommend or permit. iii 4. Everyone has a duty to care for his or her own life and health and to seek necessary medical care from others, but this does not mean that all possible remedies must be used in all circumstances. One is not obliged to use extraordinary or disproportionate means, that is, means which offer no reasonable hope of benefit or which involve excessive burdens. Decisions regarding such means are complex, and should ordinarily be made by the patient in consultation with his or her family and physician when that is possible. iv 5. Decisions regarding human life must respect the demands of justice, avoiding all discrimination based on age or dependency. v A human being has unique dignity and an independent value, from the moment of conception and in every stage of development, whatever his or her physical condition. In particular, the disabled person (whether the disability be the result of a congenital handicap, chronic illness or accident, or from mental or physical deficiency, and whatever the severity of the disability) is a fully human subject, with the corresponding, innate,

5 sacred and inviolable rights. First among these is the fundamental and inalienable right to life. vi 6. One is not obliged to prolong the life of a patient in the final stages of dying by whatever possible means: When inevitable death is imminent in spite of the means used, it is permitted in conscience to take the decision to refuse forms of treatment that would only secure a precarious and burdensome prolongation of life, so long as the normal care due to the sick person in similar cases is not interrupted. vii Thus, because one is not obliged to use extraordinary means (see above #4) in the final stages of life for a person, the directive do not resuscitate is morally permissible. In what follows, it is necessary for the concerned persons to have correct knowledge about what is morally correct and acceptable regarding the withdrawal of artificially assisted food and water from severely ill, comatose, or disabled persons. This is a very significant question since omitting all nutrition and hydration is inevitably fatal. In cases where death is imminent due to an underlying terminal illness, each case must be reviewed on an individual basis. Also, some who propose such omissions do so because they directly intend to hasten a person s death. They recognize the person not as dying, and believe it would be better is he/she did since the since the person is perceived to have a low quality of life or to impose burdens on others. I would like to address the quality of life and excessive burden questions. Questions for Discussion: 1. Define euthanasia. When do we say it is morally wrong why do we call it suicide? 2. What does Jesus teach us from his life about the redemptive power of suffering?

6 III. Quality of Life Most certainly quality of life must be sought, insofar as it is possible, by proportionate and appropriate treatment, but it presupposes life and the right to life for everyone, without discrimination and abandonment. viii Obviously, artificial feeding may be considered useless at times when it cannot sustain life, such as in the case of a terminally ill patient for whom death is imminent. This is never considered to be euthanasia. Yet some would broaden the definition of useless treatment, applying it to patients who cannot be restored to some stipulated level of mental or physical functioning. They thus propose to withhold nourishment for mentally retarded children and even mentally impaired adults who cannot care for themselves. Such persons, however, who are still able to perform human activities of awareness, feeling, relating to other persons in human manner, even if minimally, are still capable of benefiting from life and from our care. To say their quality of life makes life no longer worth living is a judgment we have no right to make. Hence, it is euthanasia not only to kill them directly, but also to omit appropriate medical or nursing care proportionate to their need. Question for Discussion: 1. How does the principle of a fundamental and in alienable right to life affect ways of prolonging life?

7 IV. Burden vs. Benefit The dignity of the human person requires that normal health care be given to any patient. Artificially assisted feeding, which is easily tolerated by a patient, is a form of normal care, even though it may require some medical assistance. Even if a procedure is seen as a medical treatment, it is still morally obligatory if it is commonly considered an ordinary means of survival, that is, if it provides a reasonable hope of benefit and does not involve excessive burdens. Even when a feeding tube does not impose great burdens on the person, it is not morally obligatory when it ceases to provide a reasonable hope of benefit. For example, a patient who cannot assimilate nourishment provided by particular means is under no obligation to accept or to maintain that particular procedure. How is this benefit to be measured? God has given us life to carry out human activities that make us better persons, serve the human community, and lead to eternal life with Him. Therefore, the benefit of care or treatment to prolong the life of a dying person, or of a person for whom these human activities have become very difficult or even no longer possible diminishes in proportion to what remains possible for them. Individuals when competent may themselves decide to refuse such care or treatment provided they so not intend suicide and provided they do so in view of their responsibility to God for their stewardship over His gift of life. When others must make such decisions for persons who are no longer competent, they should do so following the same principles. A medical treatment is considered burdensome if it is too painful, too damaging to the patient s bodily self functioning, too psychologically repugnant to the patient, too restrictive of the patient s liberty and preferred activities, or too suppressive of the patient s mental life, or too expensive. ix It may also be burdensome to those who have the responsibility of giving the care because of their other obligations, the psychological strain, or the excessive expense to them or to the public, or because of the limitations of scarce medical resources. Our tradition recognizes a patient s right to refuse a medical procedure that would impose excessive burdens on him or her. This would apply to a procedure which itself creates a new impairment imposing undue burdens on the patient (e.g. an amputation that could prolong life). A patient must not refuse a procedure in order to hasten his or her death, but may do so to avoid new burdens created by the treatment. Those who have the obligation of care have the right not to assume excessive burdens, which would make impossible their fulfillment of other greater obligations. In the case of incompetent patients who cannot decide for themselves on a particular form of care, such as artificial hydration and nutrition, those who are responsible for this care should first of all make sure that they have received competent medical advice about the probable burdens and medical benefits of this type of care. They should then conscientiously judge whether the benefit to the patient in terms of possible recovery or a prolongation of at least minimally conscious life justifies the burdens, which will be entailed. Obviously, if the benefits are not significant, there is no moral obligation to employ procedures other than those required out of respect to human dignity. Since these

8 procedures are not obligatory, to omit them is not to intend the patient s death, but to permit nature to take its inevitable course. Burdens must be assessed on a case-by-case basis, and in many cases a specific burden can be alleviated without depriving the patient of all nutrition and hydration. If it is decided to stop nutrition and hydration during the dying process, then proper nursing care should be taken to alleviate any resulting discomfort in a still conscious patient or in the unconscious patient to prevent any appearance of disregard for human dignity. A burden to the patient can also be psychological, but a careful distinction must be made between a rationale motive and unreasonable fear of depression, which may lead a patient to an unwise decision. Proper psychological and spiritual care may help a patient overcome such fear and discouragement and awaken a normal desire to live. Also, if those having the responsibility of care manifest an attitude favorable to euthanasia, or refuse to permit procedures that would be of real benefit to the patient, it is the responsibility of other persons to intervene in the patient s behalf. A burden can also be economic in nature. While families and society have a most serious responsibility to provide every sick person with appropriate care as far as their resources permit, there are limits to these resources. Their expenditure should be justified by a realistic assessment of the benefit to the patient. The tendency of modern medicine to employ every possible mode of treatment, regardless of expense of real benefit to the patient, should not be used as the criterion of ethical decisions. On the other hand, a refusal to give proper care to certain classes of patients on the ground that they cannot contribute to society or are a burden on society is euthanasia by omission. Questions for Discussion: 1. What are the principles to follow in using the criteria of burden vs. benefit in health care decision-making? 2. How does the issue of economic burden fit into this schema?

9 V. Public Policy The difficulties families may face in this regard and their need for improved financial and other assistance from the rest of society should not be underestimated. Public policy should reflect the obligation to assist patients and families faced with these burdens. I applaud and strongly endorse laws authorizing the Durable Power of Attorney and Living Wills. Such documents enable the patient to make his or her own decisions about treatment, and remove undue stress and controversy from family members. The legislative criteria clearly exhibit a fundamental respect for the dignity and fundamental value of the human person in the dying process. However, Catholics who choose to draft such documents are encouraged to stipulate that they be interpreted by the attending physicians and the courts according to the moral norms in this pastoral letter. Our medical and legal systems should continue to reflect and uphold the dignity of the most vulnerable, helpless and innocent in our society by (1) continuing to prohibit all directly intended killing of human beings, even by so-called assisted suicide, no matter if they be handicapped, comatose or suffering from a terminal illness; (2) leaving the decision on the appropriate care of patients to the patients themselves when competent, and to their families or other legal guardians after being fully informed by their physicians, but providing access to the courts to protect the rights of patients in cases of abuse; and (3) supporting a general presumption in favor of providing nutrition and hydration to patients for whom they are a benefit. x Questions for Discussion: 1. What elements are important in forming public policy regarding the treatment of the dying? 2. Who can/should make decisions regarding a person s health care?

10 VI. Conclusion I would like to state the following conclusions in light of the present moral climate of our society, and founded upon the principles and applications listed above: 1. When the intended effect of death is brought about by withholding or withdrawing ordinary life support, the action is euthanasia, and must be rejected. Not all decisions to withhold or withdraw nourishment or other means of survival constitute euthanasia, because in some cases hastening death is not the direct intention, but only seen as a side effect. In the case of patients who cannot assimilate nourishment, or whose death is imminent and no reasonable hope of sustaining life or providing other benefits exists, nourishment becomes useless. 2. The decision to use any particular procedure, including special means of life support such as a respirator, or hydration and nutrition by intubation should be made on the principle that such procedures are not morally obligatory unless the realistically assessed benefits exceed the physical, psychological, or economic burdens either to the patient or to those with the responsibility to provide care. 3. The benefit to patients of a particular procedure should be judged in view of what will contribute to human functioning so that they may complete their life tasks and achieve their spiritual destiny. 4. The decision about the use of such procedures belongs first of all to competent patients themselves, and when incompetent, to their families or other proper guardians. But such a decision must be made according to sound moral principles and after patients have been well informed by their physicians on the probable medical benefits and burdens. Resort to the courts should be made only in cases of abuse. I would like to take this opportunity to thank the people who work in health care professions. I thank them on behalf of all the people whose lives they touch through their healing ministry, and remind them of the tremendous influence they have on those who come to them. I continue to pray for those family members who live daily with the stress and anxiety involved in their self-sacrificing love for a disabled, comatose or dying loved one. I remind them that they are truly fulfilling the mandate of Jesus who promised that those who would care for the sick are truly caring for Him. And I continue to pray for and uphold the dignity of the disabled, comatose and dying persons. Their condition in no way lessens their inherent dignity and fundamental value as a creature made in the image and likeness of God. This letter has been drafted and distributed because of the Church s genuine concern and deep respect for them.

11 Given this Easter Day, April 3, Most Reverend William H. Bullock Bishop of Madison Questions for Discussion: 1. Some questions, concerns I still have are 2. I can obtain information to help address these questions and concerns from or through i Kevin D. O Rourke and Benedict M. Ashley. Ethics of Health Care, Catholic Health Association of the United State (St. Louis 1986), page 204. ii Congregation for the Doctrine for the Faith, Declaration on Euthanasia (1980), Part II. Origins, Volume 10 (1980), page 155. iii Committee for Pro-Life Activities NCCB/USCC, Nutrition and Hydration: Moral and Pastoral Reflections (1991), page 4. iv Ibid. page 5. v Congregation for the Doctrine of the Faith, Declaration on Procured Abortion (1974) 12. vi Document of the Holy See for the International Year for Disabled Persons (March 4, 1981), I.1.II.1., Origins, Volume 10 (1981), pages vii Declaration on Euthanasia, Part IV., Origins, Volume 10 (1980), page 156. viii Pope John Paul II, AASI, Volume 80, ix William E. May, Feeding and Hydrating the Permanently Unconscious or Other Vulnerable Persons, Issues in Law and Medicines, Volume 3 (Winter 1987), page 208. x NCCB Committee for Pro-Life Activities, Guidelines for Legislation on Life/Sustaining Treatment, (November 10, 1984), Origins, Volume 14 (January 24, 1985), pages