Caring for People at the End of Life

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CHA End-of-Life Guides TEACHINGS OF THE CATHOLIC CHURCH Caring for People at the End of Life

The CHA Catholic End-of-Life Health Guides: Association Church has Teachings developed this guide in collaboration with physicians, nurses, theologians and ethicists within Catholic health care. It is based on frequently asked questions to help you think about end-of-life decisions and prepare an advance health care directive. Although the guide reflects the perspective of the Catholic tradition, the information is helpful to people from any religious tradition. INTRODUCTION TEACHINGS OF THE CATHOLIC CHURCH Caring for People at the End of Life Modern medical technology has given us wonderful opportunities to bring about cures, slow the process of disease, and alleviate symptoms. This same technology, however, can at times create hard decisions for patients and their families about continuing its use when treatment becomes burdensome to the patient without providing benefit. Modern technology has saved countless lives, but it has also made end-of-life decisions more complicated. In part, the very success of technology has heightened the expectation that it will always benefit the patient. Unfortunately, this heightened expectation can lead patients, family members and health care professionals to pursue treatments beyond the point where there is a reasonable hope for benefit. Patients and their families may fear an impersonal prolonging of the dying process in an intensive care unit, surrounded by tubes, wires, and machines. At the same time, they may also fear that refusing such treatment will make them seem to be hopeless cases, that others will not respond to their needs and that they will be abandoned. Family members may even feel that not doing everything possible is to abandon their loved one, even though this is not the case. Such competing 2 www.chausa.org 1

concerns about continuing or refusing treatment complicate end-of-life decisions, making them seem almost impossible to make. Death is swallowed up in victory. Where, O death, is your victory? Where, O death, is your sting? 1 Corinthians 15:55 New American Bible There is a long tradition in Catholic moral theology that is as relevant today as when it was developed over 500 years ago. It speaks of reasonable care in terms of the benefits of such treatments being proportionate to the burdens that the treatments impose. The tradition does not prescribe a hardand-fast rule regarding specific medical procedures but rather urges prudent decisions regarding the benefits and burdens of medical treatments for the patient. In doing so, the Catholic tradition offers a middle ground between two extremes, on the one hand intending the death of a patient by euthanasia or assisted suicide, and on the other hand continuing useless or excessively burdensome treatments, often against the patient s wishes. 2 www.chausa.org 3

What is the Catholic Church s teaching about end-of-life decisions? Catholics believe that human life is a gift from God, a sacred gift that no one may dispose of at will. All persons, regardless of their medical condition, possess inherent dignity and are worthy of respect, protection, and care. Respect for human dignity and human life demands that we will take reasonable care of our lives. Such respect, however, does not mean that we must do everything possible to prolong physical life, especially when death is inevitable or when treatments would be too burdensome for the patient. The Ethical and Religious Directives for Catholic Health Care Services (ERDs), a document issued by the United States Conference of Catholic Bishops that guides the practice of Catholic hospitals, long term care facilities, and other Catholic health care organizations, summarizes the Catholic tradition when it advises against two extremes: 1. Intentionally causing death by means of euthanasia, including physician-assisted suicide. 2. Continuing useless or burdensome medical interventions, even when the patient legitimately wishes to forego such treatments. This understanding of burden and benefit is the basis for what the Catholic moral tradition has called the distinction between ordinary or proportionate means and extraordinary or disproportionate means. Ordinary means is not equivalent to ordinary medical care. Rather, it is understood in terms of whether a particular medical intervention or procedure offers a reasonable hope of benefit to the patient that is not excessively burdensome. The distinction between ordinary and extraordinary means will be described in greater detail later in this guide. How has this teaching developed? The Church s teaching regarding end-of-life care is not new. The understanding that human life is a sacred gift from God has biblical roots. The opening chapters of Genesis explain that God formed Adam out of dust and blew into his nostrils the breath of life (Gn 2:7.) Later in the Old Testament, Job professes that it is God who gave him life (Jb 10:11-12.) In the New Testament, the First Letter to Timothy is even more explicit, speaking of God who gives life to all things (I Tm 6:13.) Catholic moral reflection on this biblical teaching accepts the fact that although one has a duty to preserve life, this duty is not absolute. What would become the distinction between ordinary and extraordinary means was formulated in the 16th century. Following the teaching of the 13th century Doctor of the Church, St. Thomas Aquinas, theologians at the time argued that no one is required to use all 4 www.chausa.org 5

means at one s disposal to preserve life but only what is reasonable, taking into consideration the patient s circumstances. In the 18th century, St. Alphonsus Liguori, who was one of the most influential moral theologians of his time, explained the meaning of reasonable in Book III of his work entitled Moral Theology: There is no obligation to use an uncommon or costly medicine; there is no need to change one s place of residence to move to a healthier climate; no one is held to employ a difficult means such as an amputation in order to preserve life; abhorrence of a treatment can render it extraordinary, in the moral sense. In the 20th century the Catholic tradition continued to develop through the writings of Pope Pius XII. In a famous address in 1957, he stated: Normally one is held to use only ordinary means according to circumstances of persons, places, times, and culture that is to say, means that do not involve any grave burden for oneself or another. A stricter obligation would be too burdensome for most people and would render the attainment of the higher, more important good too difficult. Pope Pius s words are echoed in the Vatican s 1980 document entitled Declaration on Euthanasia and in St. John Paul II s encyclical, The Gospel of Life. Part IV of the Declaration explains that 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. the equivalent of suicide or euthanasia; it rather expresses acceptance of the human condition in the face of death ( 65.) If this tradition is over 500 years old, how can it have anything to say about contemporary decisions involving today s complicated medical technology? Haven t things changed too much? Although the diseases we face and the treatments available to us have changed, Catholic teaching regarding care at the end of life has remained remarkably durable throughout the ages, although it is often misunderstood. Similarly, St. John Paul II s encyclical states: Certainly there is a moral obligation to care for oneself and to allow oneself to be cared for, but this duty must take account of concrete circumstances. It needs to be determined whether the means of treatment available are objectively proportionate to the prospects for improvement. To forego extraordinary or disproportionate means is not The reason for this durability is that the tradition does not speak about specific technological remedies or interventions as being ordinary or extraordinary, but rather asks whether a given medical treatment is burdensome or beneficial to the patient. As Pope Pius XII explained, the distinction offers guidance that is dependent upon circumstances of persons, places, times, and culture. 6 www.chausa.org 7

What does it mean when Catholic teaching states that two extremes must be avoided in end-of-life decisions? The Catholic moral tradition recognizes that virtuous behavior entails a balance or proportion that can be harmed by two extremes, shortcoming or excess, each of which is a vice. In the case of decisions at the end of life, the two extremes are euthanasia or assisted suicide on the one hand that is, intentionally causing death and, on the other hand, what many health care professionals call medical vitalism that is, attempts to preserve the patient s physical life in and of itself without consideration of any reasonable hope for benefit, even when the patient would not want to continue the treatment. 1. Withdrawal of technology with the intention of causing death 2. Insistence on useless or burdensome technology? Especially at the beginning of an illness a variety of medical interventions are appropriate. However, there comes a time with serious advanced illness when continued attempts at a cure are no longer of benefit to the patient. This acknowledgement is not abandoning the patient but rather acknowledging the human condition and the limits of medicine. St. John Paul II, in his encyclical, The Gospel of Life, explained: Euthanasia must be distinguished from the decision to forego so-called aggressive medical treatment, in other words, medical procedures which no longer correspond to the real situation of the patient, either because they are by now disproportionate to any expected results or because they impose an excessive burden on the patient and his family ( 65.) Practically speaking, how does one distinguish between ordinary and extraordinary means? Unfortunately, the language of ordinary and extraordinary means can cause confusion for those unfamiliar with the Catholic moral tradition. Many people use these moral terms in a manner similar to the way such terms may be used in medicine that is, ordinary or extraordinary forms of medical treatment, where extraordinary becomes equated with procedures that are rare or experimental. This is not the case in terms of the moral meaning of these words. What distinguishes ordinary from extraordinary in Catholic moral theology is not whether the treatment is ordinary in the sense of being normal or frequently used, but rather whether the treatment is beneficial (ordinary) or excessively burdensome (extraordinary) to the patient. Thus an ordinary treatment in the medical sense can be extraordinary means in this moral sense if it is excessively burdensome or poses excessive risk for the patient. For example, many forms of 8 www.chausa.org 9

chemotherapy would today be considered ordinary medical care for cancer patients. For a particular cancer patient, however, especially at the late stages of cancer, that same treatment may become extraordinary means because it can no longer benefit the patient and causes a great deal of discomfort and pain. What does the Catholic tradition mean by benefit? Isn t simply living longer in itself a benefit? The Catholic moral tradition has not been very specific in its description of benefit. However, it is clear in the tradition that simply prolonging physical life, especially when the means to accomplish prolonging life are precarious and burdensome, is not required. According to the Catholic moral tradition, for any medical procedure to be considered ordinary means, it must be worthwhile in quality, duration, and in the sense of being proportional to the effort expended in using the means. Moral theologians in the 20th century often spoke of hope for success in assessing ordinary means. What about the idea of burden? How do I know if a medical treatment is too burdensome? The Catholic moral tradition has been clearer in its account of burden. Since the 18th century, the tradition has described four aspects of burden: Excessive pain. The fact that a treatment may cause an unreasonable amount of pain for an individual can render the treatment excessively burdensome. Great cost or means. Catholic moralists explain that no one is obliged to spend a great amount of money to preserve one s life. Catholic Church teaching accepts the fact that a person may decide not to impose excessive expense on oneself, one s family or the community. Grave effort. The duty to preserve life, furthermore, does not mean that a patient must exert an extraordinarily great amount of effort. For example, someone living 10 www.chausa.org 11

in the Midwest would not be obligated to move to Palm Springs, California because it would be a healthier environment, considering the person s respiratory disease. Severe dread or repugnance. Finally, intense fear or strong repugnance can make a treatment that most would consider to be ordinary means excessively burdensome and therefore extraordinary means for that particular patient. The 17th century Jesuit moral theologian, Leonard Lessius, explained: No one is held to accept a cure which one abhors no less than the disease itself or death. But our citizenship is in heaven, and from it, we also await a savior, the Lord Jesus Christ. He will change our lowly body to conform with his glorified body by the power that enables him to also to bring all things into subjection to himself. Philippians 3:20 21 New American Bible Who determines what is ordinary means and what is extraordinary means? The Vatican s Declaration on Euthanasia explains that in making a judgment regarding end-of-life decisions, one must take into account the state of the sick person and his or her physical and moral resources. It is for this reason that the U.S. bishops Ethical and Religious Directives maintain that: The free and informed judgment made by a competent adult patient concerning the use or withdrawal of life-sustaining procedures should always be respected and normally complied with, unless contrary to Catholic moral teaching (Directive 59.) The right to make an ethical decision regarding what would be an ordinary means or an extraordinary means belongs to the patient or his or her surrogate. However, for Catholics such decisions should be made taking into consideration the Catholic moral tradition on end-of-life care. For a discussion of surrogate decision making, see the CHA End-of-Life Guide on Advance Directives available at www.chausa.org/ethics. 12 www.chausa.org 13

Is there an ethical difference between not beginning medical treatment and discontinuing treatment once it has begun? Although there may be emotional or psychological elements that make withdrawal of treatment more difficult than not initiating such treatment, there is no ethical distinction between refusing treatment and discontinuing treatment. Appropriate ethical reasons for not initiating a given treatment are also justification for withdrawing the same treatment. In his encyclical, The Gospel of Life, St. John Paul II explained that one may discontinue medical procedures which no longer correspond to the real situation of the patient, either because they are now disproportionate to any expected results or because they impose an excessive burden on the patient and family ( 65.) What does the Catholic moral tradition say about pain relief? What if the use of pain killers raises the possibility of shortening the patient s life? Since the Catholic Church speaks of the redemptive value of suffering, some Catholics believe that they must accept pain in order to unite their suffering with that of Christ. This is not the Church s moral teaching. The ERDs explain that patients should be kept as free of pain as possible so that they may die comfortably and with dignity (Directive 61.) Furthermore, in his encyclical, The Gospel of Life, St. John Paul II reaffirmed the teaching of Pope Pius XII and stated that it is proper to relieve pain by narcotics, even when the result is decreased consciousness and a shortening of life ( 65.) What is ethically required concerning giving food and water at the end of life? The purpose of food and water is to help the body sustain life. When the body is no longer able to process food and water or when their use becomes too burdensome for the patient, using artificial nutrition and hydration becomes a disproportionate way to preserve life and is therefore morally optional. In such circumstances, we are not starving the patient. Rather we realize that food and liquids are no longer fulfilling their purpose of nourishing the patient and may be causing additional pain. Directive 58 of the ERDs emphasizes the general moral obligation to provide nutrition and hydration, even when administered medically, but it also explains that one can reject these measures when they cannot reasonably be expected to prolong life or when they would be excessively burdensome to the patient. When it is determined that medically assisted nutrition and hydration are not beneficial, our duty to care for the patient in other important ways remains, such as providing pain relief and caring for spiritual needs and healing. 14 www.chausa.org 15

What if family members disagree on treatment options? For more information: This is one of a series of publications from the Catholic Health Association to help patients, families and caregivers with decisions about end-of-life care. We invite you view the accompanying guides for additional assistance. These and other resources are available to order or download at www.chausa.org. If patients are able to make their own decisions about treatments and express them to others, their free and informed decision should be honored. Difficulties often arise, however, when patients can no longer speak for themselves and family members disagree on the appropriate treatment. It is important for people to discuss their endof-life care with their families prior to becoming incapacitated in a process of shared decision making. These important conversations should include the discussion of the person s values and faith commitments as well as treatment options. Often these discussions are postponed until it is too late and the patient can no longer express these wishes on his or her own. When this happens, family members do not know the wishes of their loved one and are unable to carry them out. It is important to discuss your decisions with your physician, surrogate and family members to help all understand the health care options in relation to your particular illness, values and faith commitments. As the Ethical and Religious Directives explain, Neither the healthcare professional nor the patient acts independently of the other; both participate in the healing process. 16 www.chausa.org 17

TEACHINGS OF THE CATHOLIC CHURCH Caring for People at the End of Life WASHINGTON, D.C. OFFICE 1875 Eye Street NW, Ste. 1000 Washington, D.C. 20006 202.296.3993 phone 202.296.3997 fax ST. LOUIS OFFICE 4455 Woodson Road St. Louis, Missouri 63134 314.427.2500 phone 314.427.0029 fax www.chausa.org