Spiritual Care as Death Approaches Late in Life
By Paul E. Irion
The essential spiritual task in the later years of life is to have hope. The satisfactions of an increasingly productive career, of a growing family, of travel, and of a widening circle of social relationships gradually begin to diminish as the later years of life unfold. The excitement and expanding possibilities of retirement fade as walkers and canes replace golf clubs, and bridge clubs become bereavement support groups. Family homes are left behind in favor of the one-last-move to the home of a daughter or son, or to the life-care retirement community with its apartments, personal care section, and skilled nursing facility. Eventually, for everyone lucky enough to have reached old age, life becomes a series of declines, diminutions, disappearances, separations.
The declines of later years accumulate and accelerate. Creaky joints and reduced energy gradually blend into chronic illness. More and more things start going wrong in one's body. Hearing and sight are diminished. Eating is less for pleasure than for keeping going. Ailments multiply and become more serious. Finally such illness or the sheer running out of time bring about the ultimate element of decline: death. If we reflect that dying is a process rather than a single event of the final breath, we must acknowledge that the late years of life are a process of dying and that the hope we are thinking about here is hope in the face of mortality.
How can one be hopeful in the face of such accelerating cumulative losses? That is the spiritual quest in the later years of life. Of course, it is easier to have hope when all is going well. But obstacles to the achievement of goals, hindrances to moving forward, disappointments, and defeats can make hope more difficult. If such limitations are severe, a person in the later years may have periods of hopelessness.
To begin, we must understand something of the nature of hope. So often it is confused with magical thinking, as if by wishing for something we could bring it into being. Dobihal and Stewart (1984) clarify the nature of hope. "Hope...may be seen as different from wishing. To wish for something to be different is a passive emotion and tends to lead toward wanting someone to effect a magical solution. Hope, on the other hand, is a goal-directed vision that enables one to live effectively in the present and move trustingly toward future possibilities."
Erik Erikson (1963) speaks of the final stage of life as maturity. Successful maturity, in Erikson's terms, involves finding integrity in one's life, or put in the vernacular, "getting it all together." The person who in the late years of life can look back over the years and say sincerely, "It's been a pretty good life," finds that the pieces of his or her life experience fit together like a picture emerging in a jigsaw puzzle. The person with integrity feels "connected" to that which gives life meaning. Such integrity forms the basis of hope when all else is diminishing.
For each of life's stages Erikson poses a tension between the positive developmental achievement and the consequences of failing to achieve that goal. For the old-age stage, Erikson sees people struggling between integrity and despair. Since the opposite of despair is hope, it is clear that integrity, connectedness, is the foundation for hope.
Although there are people who are so disadvantaged by social injustice that they tragically live most of their lives without hope, most of us accumulate some experiences of hope throughout our lifetimes. Hope pulls one into the future, drawing us on with the possibility of reaching or approximating goals. Usually these hopes occur when some new phase of life begins: marriage, changing to a new job, moving to a new home. In young adulthood people are motivated by their hopes, drawing them into a promising future. There are seemingly unlimited possibilities, goals to be achieved. Sometimes these hopes become realities; sometimes they deflate as impossible dreams.
As people reach middle age, there is often the realization: I am not going to accomplish everything I set out to do, I am not going to be able to be everything I wanted to be. This detonates what many have called the midlife crisis. Some make feverish attempts to regain youthful momentum, others adjust realistically to what they have been able to accomplish.
In the later years of life we can draw on the reservoir of these experiences of hope, even though they may be in the distant past. The problem is that there may not be in the present situation the same kind of challenges, the same energy, the same possibilities that fueled these earlier hopes. The enthusiasm of youth, the ambition of early adulthood, the job satisfactions of middle years have faded away. The world of present reality has become increasingly limited, making the content of earlier hopes increasingly irrelevant. The choice is to scale back, to learn to live in hope with illness, weakness, loss and mortality, or to retreat into apathy, compulsive nostalgia, or despair. In the later years of life it is the form of hope that must be revived and filled with new, and appropriate, content.
What, then, are appropriate hopes for older persons? They should be able to find hope in connectedness, the courage found in not being alone, and the support that comes through the loving care of others.
Connectedness can have so many dimensions. In its simplest form it is being connected to other people. We have grown up in a family network, a web of relationships. But parents have died, spouses may no longer be with us, children may live far, far away. In the time of our grandparents, old people were looked after and supported by friends and neighbors when family members were not available. In our time we have developed a mechanism of surrogate families, people who are employed to care for people in retirement communities and frail older persons in nursing homes and hospitals. Even those who no longer have family can find hope in the connectedness to their caregivers. They can have hope because they are not alone.
Or an older person may find hope in the connectedness that goes beyond personal relationships. Some would interpret this theologically and draw hope from their sense of being connected with God. Facing a dark and unknown future, they find hope in the sense of not being alone. They draw upon their religious faith and its promise of a life to come, which surpasses their present existence with all its difficulties.
Robert Lifton (1970) has noted five ways in which people who are dying or grieving express hope for the future. Some hope in terms of biological immortality: living on after death through one's children and thus continuing to participate in the genetic pool. Others frame their hope in the form of social immortality, in which the creativity of one's life endures in contributions that have been made to the lives of others. Still others interpret their hope for the future as the continuity of the natural process. One's life may end, but the process of which one has been a part lives on. Yet another way of portraying hope is to think of dying as an experience of ecstasy, or absorption into a transcendental reality. Finally, there is the theological view expressed in Judeo-Christian imagery as life after death, in which personal existence continues or is restored in a spiritual life beyond death. Note that all these involve connectedness in real but differing dimensions.
What a person thinks or believes is only a personal reflection, not the substance of truth. Just by thinking something, we do not make it true. In a sense, any of the five ways in which Lifton describes hope for overcoming death can be a viable interpretation. One selects from them the way that is most personally meaningful and helpful, to shape one's perception of the future.
Older people hope in many different ways, ranging from the articulation of hope in their religious tradition to highly personal aspirations. To hope is to reach beyond the present, desiring something better than the present situation.
Most religious traditions offer the hope of somehow transcending death, the ultimate loss, in the hope of heaven or its equivalent peace and blessedness. For some this is a literal belief in heaven. For others heaven is not a literal place but a new quality of existence they cannot know but nevertheless believe awaits them. It is variously described as life with God, everlasting peace, eternity. Clearly some people hope for an existence that is free from all the pains, privations, and limitations of present life.
Belief in some ideal existence beyond death is not the only hope. Some, without positing a life after death, may simply hope for release from existence, which has become painful or debilitated. And there are those who hope for strength to confront their growing losses. A good friend, unexpectedly diagnosed with terminal cancer, told those who were concerned for him, "Don't pray for a miracle to make the cancer go away. That is not going to happen. Pray that I will have the strength to confront this crisis." They did and he did.
Again and again we see hospice patients express hope in the peace they find in living out their days in the company of family and friends. Hospice care makes it possible for people to be hopeful that they will not suffer, that they will not be alone in the hour of their death, that their family will be supported. These are very tangible, immediate hopes, but they are also powerful aids in living with the ultimate limitation, in dying with dignity and poise. Hope really accomplishes a great deal more in changing the attitudes and responses of the person than it does in changing external circumstances.
These forms of hope are not mutually exclusive. Older persons, depending on their accumulated experience, their belief system, their values, their character, can find hope in any or all of these ways. This is no simple either/or; it is quite possible for people to hope simultaneously in several dimensions.
While there are many useful dimensions of hope, we need to be reminded that there are also counterproductive hopes. Some would hope to avoid aging and make pathetic attempts to clutch at fading youth. Others hope to avoid any signs of approaching decline by refusing to think about or plan for diminished years. Still others hope to avoid death by clinging to our culture's pervasive denial of death, refusing to admit the possibility of mortality until it is inexorably forced upon them.
Hope that denies the reality of one's situation, hiding from limitation and decline, is bound to be counterproductive. Such hopes usually are either naive optimism or useless distractions. Unrealistic optimism fails because it is based on illusions rather than the way things really are. Distraction, simply refusing to think about what is actually happening by paying attention only to superficial matters, focuses on the irrelevant.
These hopes are counterproductive for two reasons. First, they are doomed to fail because unfolding circumstances will prove them false hopes. The person who has pursued these will-o'-the-wisps must face the unavoidable decline with a sense of defeat, which easily becomes despair. Secondly, such unrealistic hopes for too long are substituted for realistic hopes, leaving the person hopeless as he or she confronts significant diminishment and the need somehow to live through it.
Each person throughout life seeks his or her own forms of hope. In the early and middle stages of life we can risk exuberant hopes and recover fairly readily if they cannot be achieved. But in the late stage of life hope must be tempered by realism. The options present in earlier experience are drastically narrowed and there is less and less time for recovering from the consequences of a misplaced hope.
Expressing hope is a creative way of adapting to one's perception of the future. For the person late in life, the immediate future is foreshortened; five- or 10-year plans are irrelevant. So the person often seeks meaning by positing a future beyond the experience of death and expresses that hope in ways that are personally meaningful. The hopeful aged person does not stay fixated on the past to slow down the passage of time, but, by engaging the future with courage, lives out the remaining time positively.
The radical termination of life as we know it is difficult, if not impossible, to accept fully. So it is very common to think in terms of some ongoing existence after death. Such concepts of afterlife cannot be empirically based but are articles of personal faith. Because the life-death continuum is not directly known, it is only natural that people have many questions about life after death.
These questions take two general forms: What is the nature of life after death? and will I live after death? The nature of life after death has to be described metaphorically. Some of the metaphors are used to describe hoped-for continuity with present life. Personal identity and relationships are thought of as continuing on, described in terms of recognition and reunion. Metaphors of completion and fulfillment describe ways in which life after death continues this life in a perfected state: life with God, relief from pain, peace, purification, reward, release, rest. Still other metaphors describe discontinuity with present life. The life after death is characterized by freedom from finite limitation, by being no longer subject to time and space, by entering a new realm of existence, by being accepted into the whole.
Answers to the other question-Will I live after death?-depends in part on how judgment figures in a person's view. For those who think in Platonic terms, immortality of the soul is a standard human endowment; it is for everyone. But for those who think of life after death as a gift from God, as in the Christian concept of resurrection, immortality may or may not be given. The thought of judgment impinges here and a person may wonder: Will I be found worthy? Will I be forgiven? Will I find grace? Christian thought ranges along a continuum from those who propose a universalism in which everyone is given new life by the love of God to those who hold to a process of election by which new life is given only to some.
Those facing death and their family members will be in one of two modes as they talk about life after death. In the affirming mode, they have either accepted the teaching of others or have worked out their own responses to their questions about this mystery, so they are able to state their belief affirmatively. Those in a questioning mode probe what life after death might mean for them. They may find that earlier conceptualizations are no longer satisfying. They struggle to state their hope in new ways.
In either mode the spiritual caregiver supports whatever affirmations individuals can make. The concern is not so much for people to have a "correct" understanding as it is that they have an understanding that satisfies their personal quest; if we knew the truth, it would be different. We need to acknowledge with intellectual humility that we deal here with a mystery.
A second crucial step is to help the person facing death or the family member to reflect on what that particular understanding does for him or her. This is not done in an effort to discount or devalue a particular interpretation, but to help the person understand why that interpretation is helpful in dealing with the situation of terminality.
How does this happen? How do we help persons late in life have hope? We might begin by recognizing that we do not give a person hope. Hope is not a commodity that is handed from one person to another. At best, our desire to be helpful takes the form of enabling hope to emerge from within the person.
It is understandable that people cling very hard to their own expressions of hope for the future beyond death. The need to somehow overcome death is very strong, as is the need to control the future. So people are heavily invested in whatever form their hope is expressed and assume that their way is true. They tend to be very defensive of that interpretation, which is part of their way of controlling the future.
A helpful caregiving attitude is to permit the person to express hope in his or her own way rather than to force a particular interpretation on the individual. While the caregiver is free to share the expression of hope that he or she has found most personally meaningful, it must not be presented as normative: the only good hope. The very nature of hope makes such an absolute a contradiction.
When the hopes that have sustained and energized in the past are no longer possible, one is faced with two choices: abandon hope or refocus it. Even in serious illness we struggle with the rightness of giving up hope for a cure. The words, "All hope abandon, ye who enter here," inscribed over the gates of Dante's hell, convey the ultimate in despair. Such hopelessness is linked with the symbolization, deeply rooted in Western culture, of ultimate evil.
Facing up to approaching death means careful assessment of the future. It involves defining one's most precious hopes; it requires a reshaping of attitudes and behaviors. There is a difference between giving up hope and giving up a particular hope. It is a great cruelty to deprive a person of hope altogether. The crucial question is: For what is the person hoping? The task of families or other caregivers often involves helping people to work through a transfer of hope from one wish to another, from a hope that is becoming unrealistic to one that has more promise for sustaining the person through the crisis of approaching death.
Sometimes this transfer of hope is from this life to a life to come. In this instance one person might give up hope for extending life in the present world and express hope in terms of being in a world beyond death. Others might give up hope for cure through further medical treatment and find hope instead in the profound caring of others who will not abandon them to die alone. Hope is transferred from one kind of response to life-threatening illness to another, from medical technology to high-level caring.
The spiritual caregiver has a function in helping people understand the feelings they have about giving up hope for extending life. While there is great value in understanding the transfer of hope, an astute caregiver will not assume that the transfer is made easily. In the abstract a person may talk about giving up one hope and finding strength in another, but in actual situations giving up a hope may be a wrenching experience, even when another form of hope is available.
The inner, personal response to giving up a hope that is no longer realistic is grief. We have long recognized that it is possible to grieve in anticipation of death. We recognize that anticipatory grief (although very real) is not the same as grief, which takes place following a death, because it does not have the strong sense of finality. There is still some life remaining in the anticipatory situation. It is the same with grieving for a hope no longer possible, because there is still the possibility of a new, more realistic hope.
Abandonment of hope for extending life does not mean that everything else is abandoned. Part of the caregiving function is to help the patient and family to discuss what is being abandoned and what is not being given up. For example, when a person enters hospice care active therapy and the hope for extending life indefinitely are being abandoned; however, the support of family and hospice personnel is not lost. The pain control measures brought by hospice are not abandoned. Spiritual care is not abandoned. Persons struggling with their ultimate decline are helped to experience that they belong, that they are connected-to other people who love them, to the whole world in which they live, to God.
Irion: Chapter Nine
Dobihal, E.F., Jr., and Stewart, C.W. (1984). When a friend is dying. Nashville: Abingdon Press, 84.
Erikson, E.H. Childhood and society. (1963). New York: Norton, pp.268-269.
Lifton, Robert Jay. (1970, November). The politics of immortality. Psychology Today, 70ff.
This article originally appeared in Living With Grief: Loss in Later Life, Kenneth J. Doka, Editor, © Hospice Foundation of America, 2002.
