This article was presented as a keynote address on Oct. 28, 2010, in St. Louis to palliative caregivers attending the Supportive Care Coalition's annual congress.
Current literature on the meaning and mission of palliative care argues persuasively that it is a form of care not limited to end-of-life care, or care for those who are actively dying. It is, rather, a form of care needed over a human life span, especially for persons living with serious chronic illnesses, or individuals transitioning from the challenges of illness in one stage of life (such as childhood) to another (such as young adulthood). It is no doubt justifiable even to argue that what now counts as palliative care should characterize the core of anyone's medical care insofar as it entails careful discernment of goals, multidisciplinary analyses and responses, adequate communication and genuine care of the person as a whole.
If we probe the motivations for the provision of palliative care in the light of major faith traditions, we find calls and commands to alleviate suffering; to care for the most vulnerable — the poor and the sick; to companion the dying; to act like God acts in loving one's neighbor; to labor for the good of the community by caring for its members; to respect the inherent worth of persons by responding to their basic needs.
In the Christian tradition there are blessings promised for those who visit and care for the sick, obligations understood to respond even to those we think of as the "least" of those beloved by Jesus Christ, and a radical call to drink the cup that Jesus drank — that is, the cup not only of our own suffering but of the suffering of all.
It is easy enough to recover these general calls to human love and the actions they require. It is not so easy to understand, experience and live their meaning in every context of care. To explore the topic, I have chosen to focus on two realities at the heart of human life, our responses to which are importantly shaped by how we think about them. These are the realities of aging and of dying.
I know that they are not the only realities or contexts for palliative care, but they are sufficiently paradigmatic that our understanding of them, the "meaning" they hold for us, may shape the attitudes and actions of palliative caregivers in all of the contexts of their care. Moreover, our search for meaning in relation to these particular realities cries out for the kind of illumination that faith traditions can offer. Their challenge serves as a focal point for remembering and deepening what we believe, and they offer a kind of horizon for our living out the loves and actions to which we are called.
Let us begin with aging, or more specifically, old-aging.
THE REALITIES OF AGING
Most of you, somewhere in the palliative care that you provide, have come to know well the realities of old-aging. From many of your patients or the residents of your care-giving institutions, you have learned about experiences of courage, grace, patience, trust; you have also learned about experiences of fear, pain, shame, loneliness. You have learned of myriad forms of loss, insecurity, one part of the body breaking down after another; but you have also learned about the joys of new companionship as well as old, about the possibilities of gradual acceptance, indomitable spirit, sustained curiosity. You have understood some of the reasons for bitterness, resentment, even despair; but you also have seen the personal efforts of many to keep active in the face of growing weakness and to care for others even as one's own need to be cared for grows. You know the challenges of menacing injuries, the relinquishing of mobility, countless ordinary freedoms and the corresponding threats to identity. You also know about new forms of moral agency, new ways that need to be learned regarding being as well as doing.
But because I assume that you do know so much about aging, it is not necessary for me to detail further the concrete experiences of aging. Rather, I want to think with you about old-aging in another way. I want to explore it from a faith perspective and a "faith seeking understanding" (or theological) perspective. I shall be speaking in terms of Christian faith and of Christian symbols from here on, but I trust that some analogies may be found in beliefs and symbols of other faith traditions in which some of you may stand.
Although there are many possibilities for gaining understanding of old-aging among Christian, and more specifically Roman Catholic traditions, the brevity of our time together here this morning leads me to focus on one — but one that draws deeply on the many riches of our tradition that are relevant to aging.
I take my inspiration from something that the 20th-century Catholic theologian, Karl Rahner, said (when he, himself, was 80 years old). In a short piece published in 1981, he wrote that old age is a part of one's vocation: "Old age is a grace (both a mission and a risk) not given to everyone, just as, in the Christian understanding, there are other possibilities and situations [thought of] as graces which are granted to some and withheld from others."1 In other words, not everyone gets to live into old age; but for anyone who does, it must somehow be a part of their vocation.
Attempting to explain this further, Rahner wrote, "In this connection we should not take facile comfort in the … erroneous thought that old age, like many other life situations, is a merely external situation … like a costume in which a person plays a role in the theatre of life which remains extraneous to himself, which he simply drops at death … ."2
On the contrary, if we are to take each human person's history seriously, we must understand that the period of life that is old age is, like every other period in life, potentially definitive of the meaning of that life. In other words, the final meaning of anyone's life may remain to be determined only when we are old. By this Rahner meant that the meaning of our lives is finally determined by the choices that we make about what and how to love; and for some persons, these choices may still be made even into old age.
Rahner knew well, of course, that this would not apply to persons whose old age is lived without cognitive awareness, without the possibility any longer of relating to other human persons or to God or even to themselves (as, for example, those in late-stage Alzheimer's disease, or any severe form of dementia). Such persons would have entered old age — or come to a stage within it — at a time when his or her life had already been defined, already finalized in its meaning.
But what Rahner was proposing was that for those who still do have some reflective conscious awareness; who can still make choices about their loves, about their faith and hope; about how they will bear their growing burdens; about whether they will accept or refuse the oncoming forms of diminishment that are part of the aging process — for these persons, old age is a part of their call by God. In it, they may still have important things to do, or more likely, important ways to be.
"Therefore," Rahner continues, "growing old is a really serious matter. It is a grace, a mission, and [it holds] the risk of radical failure. It is a part of human and Christian life which (like every other part of life) has its ... irreplaceable importance. ... it must be understood not simply as life's running out but as life's 'coming to definitiveness,' even when that happens under the paralyzing influence of slow, biological death."3
In order to understand this, we might consider the meaning of human time. Time for us is not like a calendar, or a clock; it is not like ordinary concepts of space, in that one part is outside another. Our time is within us. Human time is like the time of a tree (its rings of time becoming part of itself); or like a melody, which cannot be known or understood if only one or a few of its notes are heard. Our lives in time become wholes, and only when they are complete can their meaning be complete.
Hence, what we do unto the end is of inestimable importance. This in turn means that those who care for the elderly, the infirm and/or persons near death are caring for them at an inestimably significant time of their lives. Far from this being an aftermath — after the real fabric of their lives has already been woven, finished — far from this being a relatively unimportant time of life for them (because now, as we sometimes say, they are not "what they were, not really themselves"), it is, or can be, a time of grace and a time of call.
THE MEANINGS OF DEATH AND DYING
Throughout human history, death has been given many meanings. Every religious tradition has something to say about death; scientists, philosophers, psychologists, poets and artists have offered their own insights and convictions. We all have some relationship to death. Death is on the horizon for each of us, and it comes closer as our circumstances change — as we grow older, or our health begins to fail, or we are threatened by accident or injury or outside forces bearing down on us, or we experience the dying of those who are dear to us.
We may repress the reality of death, or we may come to accept it as a part of life, even though — as Forrest Gump said — we do not like it. Whatever meaning we discover for, or give to, death, it is intelligible to us and others only within the larger frame of our ultimate beliefs, or our worldview.
Among many thinkers today, there has been a growing tendency to try to understand human death simply as a part of a life span. Like every other living thing, we begin, we live, we die. Death is natural, they say, even though we find ourselves pleading, along with Dylan Thomas, "Do not go gentle into that good night … [but] rage, rage against the dying of the light."4
Even Christians who for centuries thought of death as a catastrophe, the result of a primal sin, now take seriously the discoveries of modern science and move beyond the idea of physical death as punishment or as some kind of terrible disaster unintended in the original creation of humanity.
It is sometimes concluded that the natural resources of the life of the individual simply exhaust themselves; and when the book of Genesis depicts death as the result of sin, this can be interpreted to mean that death is experienced differently because of some original human "fall," but it would always have been a part of our lives. Moreover, although Christians believe that death has been overcome in the order of redemption, this means not that death ceases to be an inevitable and still usually dreaded event, but that it does not hold the last word for human life.
Nonetheless, however much we try to "naturalize" death, it remains a problem for us in a way that it does not for other biological beings. Hence, as recently as the mid-1970s, there arose a great quarrel among some ethicists. The famous Protestant ethicist, Paul Ramsey, started it, in a way. He was disturbed that his own and others' embrace of the concept of "death with dignity" had fostered too glib an ideology for the promotion of "right to die" campaigns. Ramsey therefore published a broadside against such slogans and ideologies in an article he entitled "The Indignity of Death with Dignity."5 Death remains our enemy, he said, even if, as he said elsewhere, "God means to kill us all in the end." Ramsey worried that efforts to naturalize, and thereby dignify or even romanticize death, would add greater burdens to those who are already dying; and the tragic aspects of death would be covered over.
The Jewish physician and medical ethicist Leon Kass argued in opposition to Ramsey that there is at least the possibility of a dignified death. "Death may or may not be a great evil, but it should not be considered in itself an 'indignity.'"6 He pointed to a midrashic interpretation of verses in the book of Ecclesiastes:
When a person is born all rejoice; when he dies all weep. It should not be so; but when a person is born there should be no rejoicing over him, because it is not known where he will stand by reason of his actions, whether righteous or wicked, good or bad. When he dies, however, there is cause for rejoicing if he departs with a good name and leaves the world in peace. It is as if there were two ocean-going ships, one leaving the harbor and the other entering it. As the one sailed out of the harbor, all rejoiced, but none displays any joy over the one which was entering the harbor. A shrewd man was there and he said to the people: 'I take the opposite view to you. There is no cause to rejoice over the ship which is leaving the harbor because nobody knows what will be its plight, what seas and storms it may encounter; but when it enters the harbor, all have occasion to rejoice since it has come in safely.' Similarly, when a person dies all should rejoice and offer thanks that he departed from the world with a good name and in peace. That is what Solomon said, 'And the day of death [is better] than the day of one's birth.'7
This midrashic text signals a perspective on death not only as the natural end of the life span of humans, something that therefore can be approached with dignity; but a perspective that sees death as more than a simple ending of life in this world. In this perspective, our choices regarding what we do in life have a lot to do with whether our death and our life are "worthy of respect."
Death is a problem for human persons in a way that it is not for other living beings. We are the ones who anticipate it, worry about it, try to understand it. In this sense, even now we transcend it. We stand outside of it and ponder it, fear it, attempt to come to peace with it. We are the ones who rebel against it or accept it — though, no matter what, we die.
DEATH IS OUR HORIZON
Although past societies of humans and every major religious tradition have all tried to explain death in some way, for our society it has become and remains an enigma. We try to reduce it to a mere biological fact (the life-span model). But death threatens also from terrorists and wars and accidents that have nothing to do with aging or with communicable or genetic diseases or organic anomalies. We try our best to control death — in all circumstances; and if we cannot control it, we are in tears, we may be angry or even in despair. Why? Because we are used to controlling things, perhaps. But more deeply, because we are the ones who desire an unlimited future. We are the ones who love one another in a way that we cannot believe such loves will end.
Yet death is at the center of our lives. Not many believe any more that only our bodies die; that we "shuffle off this mortal coil" and do it easily. We know better. Death strikes at, happens to, each of us as a whole person. It is an event for us as spiritual persons, not only as biological persons (by saying this, as will become clear shortly, I do not deny the possibility of immortality for persons). We as embodied spirits, inspirited bodies, die. Death stands as the limiting condition for our possibilities in this life, the ultimate "given" in relation to which our freedom will take its stand — or not. As such, it is never merely, in a simple sense, a natural biological process. In fact, it seems unnatural to us that our very selves diminish and die, that our relationships are torn asunder, that the wrenching, which occurs at the heart of our beings, is possible despite all of our efforts against it.
What does this mean? It means that there may be another sense (than purely biological) in which death is natural (truly "human") for us. That is, it is not only as biological beings that we must die, but also (and at the same time) death belongs to us as beings who are transcendent of biology and who are free. Insofar as we are free, capable of self-determination, able to make of ourselves (within limits, of course) who we become, without death we could only live with the possibility that we may constantly undo what we have already chosen, reverse what we have already become. We might never finally "be." We would never know what it means to live out our commitments to the end, for there would be no end beyond which we could not change our mind — to betray or be faithful.
But if our freedom is not merely the power to do this or that, to constantly change our course of action, but rather (to cite Karl Rahner again) "the power to decide that which is final and definitive in our lives, that which cannot be superseded and replaced ... the summons to a decision that is irrevocable,"8 it needs death for its finality. (This is perhaps why the ultimate witness to a love is to "lay down our lives" in the many ways that this may be called for — lay down our lives for what and whom we love.)
Rahner does not suggest here that freedom only needs death in the end, but that death is, in a profound sense, a part of our life all along. It is our horizon, and we make our choices with this horizon in mind. In this sense, death lies not only in the future, but in the here and now, as a factor of what our present means. Since our life in time is limited, we must ultimately (in whatever time we have, through childhood, youth and old age) choose what we will love above all else and how we shall integrate all of our loves in relation to what we love above all else. No matter what kind of life we are living, we must affirm some opportunities and reject others (we cannot do or be everything), sacrifice some things that are valuable to us and seek others.
Insofar as life is irrevocable, our choices, too, will finally become irrevocable. Freedom is not the power always to change our loves but to determine them, to decide what we really want, what it is for which we will live or die.9
The meaning of death, then, cannot be understood apart from the meaning of life, and the meaning of life is importantly shaped by the meaning of death. If every choice that we make during our lives changes us, then our final choices ought to be our greatest — that is, choices, ratifications, of our greatest loves.
For those in a Christian context, understandings of death and life are shaped by the promises of God in Jesus Christ — both the promise that "I am with you always, until the end of the world." (Matthew 28:20); and the pledge that "I go to prepare a place for you ... so that where I am you also may be." (John 14:2-3).
In these promises lies hope in an unlimited future; love that is stronger than death; and belief that God is our ultimate destiny —our beginning and end, our holder in life and savior in death. With these beliefs and hopes, acceptance of death can be an acknowledgment of an ending that is finally God's call to ongoing life. For in this faith perspective, Christians know themselves called, in the face of death, to resist the forces of diminishment and death as far as possible, and to surrender in the end not to evil — or even sickness — but to God. Dying, as Pierre Teilhard de Chardin put it, holds the mystery and hope that our death will be truly an "act of communion" with God;10 that our final choice (if we are able to make it so) will be not mere resignation, but rather, a surrender into the heart of God.
PALLIATIVE CARE IN CONTEXT OF FAITH
I said in the beginning that retrieving insights and convictions such as these make a difference to palliative providers of care. But how is this so? My hope is that you can answer this question better than I. Nonetheless, let me offer three observations about the explicit relationship between a faith perspective such as I have been describing and the actual caring for persons in the forms with which you are familiar.
First, drawing on one's own and others' deepest beliefs and convictions helps the care that is given, hence the one who is cared for. Let me start with an example. Daniel Callahan, co-founder of the Hastings Center, made the charge in 2005 that a failure to deal with the meaning and place of death in human life has seriously limited efforts at improving end-of-life care — whether through hospice or palliative care.
He wrote, "I sometimes get the impression that recent efforts to improve care [of the dying] are managing, perhaps inadvertently, to evade dealing with death itself, focusing instead on palliative techniques and strategies."11
Whether this failure continues to exist or not, Callahan is right about the need in the context of care to probe the deepest realities involved. How we think about what we are doing, what the many needs of an ill person are, what matters most both to that person and to those who care for her, makes a difference to what we do. This goes beyond the extremely important need to assess a person's medical condition, social situation, visible fears and so forth. Good care, genuine care, requires responding to a person in her concrete reality; otherwise, the care misses its goal and may even harm the person; at the very least, it is not the holistic care which is the goal and the hallmark of palliative care.
The concrete context and reality of persons, however, includes more than what appears to the eye, or even can be heard by the ear; it includes what can be perceived by the eyes and ears of the heart, and the eyes and ears of faith — the patient's and the caregiver's. How we think about what is happening, what is possible, what we are doing, makes a difference. Insofar as faith illuminates the reality of the situation, the desires and goals of the patient, it gives meaning to all that is happening and all that can be done. To companion, or to care for, someone approaching the shadows of death or enduring the diminishments of old-aging, requires some understanding of these realities. The more profound the understanding, the better.
Second, reflecting on one's deepest beliefs and convictions helps the caregiver. Insofar as anyone desires to care for another, faith can deepen insight into the value of the one cared for; it can therefore sustain the strength of the one caring and provide grounds for hope in the relationship between them. Whether someone is aging, or moving toward death or living with a chronic disease, he must live until he dies — and live as well as possible. Unless his or her caregiver beholds, at least by faith, the gem of personhood, the fundamental value of her or his being, it is not possible to relate to the person as a whole. Whether spoken or held in silence, shared ultimate meanings — for freedom and life and death and destiny and chosen loves — make the context for care, both giving and receiving, holy.
Third, even when ultimate meanings, ultimate beliefs and hopes, are not shared; when the fundamental insights of the one being cared for and the one caring are different; a faith perspective, if it is wide and deep enough, can generate respect, each for the other. Everyone needs some way to understand what is happening, what is longed for and sought and accepted or resisted. I am precisely not talking about proselytizing, but about respecting the meaning of the experience at hand. Genuine believers (neither fanatics nor cynics nor those indifferent to meaning altogether) know in their hearts why everyone's deepest beliefs must be respected, and everyone's possibility of being held in the life of a tradition they love must be both honored and nurtured.
In conclusion, let me say only that with the [conference] theme "recovering our traditions," you have embarked on an endeavor that admits of multiple ways of approach. What I have shared with you is only one of them. Before these days are done, I trust that you will have found many other ways to enrich your understandings of what you do and what you want to do. You can hardly fail when your goal is to return to the springs of faith and hope, and thereby to the rivers of action.
SR. MARGARET A. FARLEY, RSM, is the Gilbert L. Stark Professor Emerita of Christian Ethics at Yale Divinity School and is co-founder of Yale University's Interdisciplinary Center for Bioethics, New Haven, Conn.
- Karl Rahner, "Growing Old," Prayers and Meditations: An Anthology of Spiritual Writings, ed. J. Griffiths (New York: Crossroad, 1981), 91. Rahner spoke not just from his own experience of aging, but from his many experiences of visiting residents in nursing homes.
- Dylan Thomas, "Do Not Go Gentle into That Good Night," in Collected Poems of Dylan Thomas 1934-52 (New York: New Directions, 1981), 128.
- Paul Ramsey, "The Indignity of Death with Dignity," in On Moral Medicine: Theological Perspectives on Medical Ethics, 2nd ed., eds. S.E. Lammers and A. Verhey (Grand Rapids, Mich.: Eerdmans, 1998), 22.
- Leon Kass, "Averting One's Eyes or Facing the Music? On Dignity and Death," in On Moral Medicine 1, no. 13 (1987): 210.
- Karl Rahner, "On Christian Dying," Theological Investigations 7, trans. D. Bourke (London: Darton, Longman & Todd, 1971), 287.
- This is not to say that in a Christian view of heaven there is no change, nothing dynamically new in a new life. It is to indicate only that in this new life, there is no change in the fundamental direction of one's love and life and being; the covenant with God is eternally sealed.
- Pierre Teilhard de Chardin, The Divine Milieu: An Essay on the Interior Life (New York: Harper & Row, 1960), 90.
- Daniel Callahan, "Death: The Distinguished Thing," Improving End of Life Care: Why Has It Been So Difficult? Hastings Center Report, Special Report 35, no. 6 (2005): S5-S8.
Approaching Death: Improving Care at the End of Life
Marilyn J. Field and Christine K. Cassel, eds.
Committee on Care at the End of Life, Institute of Medicine, 1997
Editor's note: The independent and not-for-profit Institute of Medicine is the health arm of the National Academies, created by the federal government to advise on scientific and technical matters. The 1997 Approaching Death study is frequently hailed as a landmark. It has sparked significant research projects and strategy development in palliative care, and its recommendations continue to be cited in the field. Among them:
- People with advanced, potentially fatal illnesses and those close to them should be able to expect and receive reliable, skillful and supportive care. Educating people about care at the end of life is a critical responsibility of physicians, hospitals, hospices, support groups, public programs and media. Most patients and families need information not only about diagnosis and prognosis but also about what support and what outcomes they should reasonably be able to anticipate. They should, for example, not be allowed to believe that pain is inevitable or that supportive care is incompatible with continuing efforts to diagnose and treat. They should learn — before their last few days of life — that supportive services are available from hospices and elsewhere in the community and that those involved in their care will help arrange such services. Patient and family expectations and understanding will be aided by advance care planning that considers needs and goals, identifies appropriate surrogate decision-makers and avoids narrow preoccupation with written directives. To these ends, health care organizations and other relevant parties should adopt policies regarding information, education and assistance related to end-of-life decisions and services. For those who seek to build public understanding of dying as a part of life and to generate public demand for reliable and effective supportive services, one model can be found in the perspectives, spirit and strategies that have guided efforts to promote effective prenatal care and develop mother- and family-oriented arrangements for childbirth.
- Palliative care should become, if not a medical specialty, at least a defined area of expertise, education, and research. The objective is to create a cadre of palliative care experts whose numbers and talents are sufficient to (a) provide expert consultation and role models for colleagues, students and other members of the health care team; (b) supply educational leadership and resources for scientifically based and practically useful undergraduate, graduate and continuing medical education; and (c) organize and conduct biomedical, clinical, behavioral and health services research. More generally, palliative care must be redefined to include prevention as well as relief of symptoms. Attention to symptoms should begin at earlier points during the trajectory of an illness because early treatment may well contribute to lessening pain at the end of life. The model for palliative care stresses interdisciplinary, comprehensive and continuing care of patients and those close to them.
Reprinted with permission from Approaching Death: Improving Care at the End of Life, 1997, by the National Academy of Sciences. Courtesy of the National Academies Press, Washington, D.C.
Copyright © 2011 by the Catholic Health Association of the United States
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