Spiritual Care at the End of Life

Tad Dunne

Appeared in Hastings Center Magazine 31:2 (April 2001) 22-26

Those who care for the non-medical needs of the dying have to attend to at least four different levels at once – emotional, ethical, religious and spiritual. For years, the spiritual level had been considered as a part of the other three. Many caregivers simply identified the spiritual with the religious or just concentrated on ethical or emotional issues as if these covered the other-than-bodily concerns of the dying.

But recently we find religious people complaining that their spiritual needs are not met by either their religion or ethics or psychology. Likewise, we find non-religious people talking about issues they call spiritual.1 At life’s end, the dying usually return to long-neglected questions about what really counts in life. About dying itself, many see little meaning in a narrowed and shortened future as they are forced to deal with friends and family in new and embarrassing ways. Where formerly they helped to lift burdens from the shoulders of others, they have now become a burden. Feeling betrayed by their own bodies, they often picture themselves as ugly, as cast out from the society of the healthy and left to wallow in feelings of isolation and abandonment, even self-hatred, fear and anger.

True, most caregivers recognize these needs as “spiritual,” but few can explain how to respond effectively. This includes not only family members of a dying parent but professional pastoral care workers as well. Caregivers need the words and ideas that can guide the attention they pay. Field instructors in training programs need to clarify how the spiritual needs of the dying relate to their emotional, ethical and religious needs. Hospice administrators need criteria for hiring effective caregivers. For all these domains of care, we need some precise definition of the spiritual.

What is ‘The Spiritual’?

To move the discussion a step toward that precision, I suggest we think of the spiritual as the ways we transcend ourselves that are not based on reason alone. Or, to chisel more precision out of that amorphous term reason, we can think of the spiritual as that realm of our living that goes beyond the insights and values that we can easily explain to one another. I don't mean to suggest that this kind of reason has no place in spirituality. We strategize, we plan, we analyze, we weigh pros and cons, we test our ideas on experience, we use logic to make sure we're being consistent and clear. But people facing death are less concerned with what they can account for and more concerned with their hopes, their companionships, and all the happy, baffling decisions they made that opened up to them a richer and deeper life.

It seems to me that this is what we mean when we refer to “the spiritual.” We are speaking of "ultimate meaning." We are speaking of all the ways we are drawn toward a "beyond" throughout our lives despite the fact that we never fully understand things. I'm thinking of transcendent events like these: How art and music symbolize the harmonies that we seek. How falling in love means taking risks that a rational assessment would not warrant. How I might realize that the expression, "There's more to this than meets the eye" is actually true about everything. How the questions about God and eternity occur even to militant atheists. Poetry can convey it:

Like pond-bound fish under global vaults of air,
Speckled by beams from up beyond our sight,
Whence luster menaces yet entices,
What shall we make of the light?

Several sages, widely separated in history, identified three remarkably similar ways we approach these transcendent meanings. Heraclitus considered faith, hope and charity as modes of knowledge distinct from a cognitio rationis.2 St. Paul pointed to the same three events as bringing him to true wisdom in Christ Jesus. Although Paul is the only biblical author who mentions this triad, the fact that it has become enshrined as the theological virtues familiar to Christians today suggests that they represent recognizably distinct features of our consciousness. Bernard Lonergan, without appealing to any religious doctrines, demonstrated that any real solution to human evil had to be a kind of faith, a kind of hope and a kind of charity.3 Lonergan went further than Heraclitus and Paul by giving a functional explanation of just exactly how these events make us self-transcending. That is, he was not laying out faith, hope and charity as just cognitional elements in some epistemology. Nor was he proposing them as standards for religious living. Rather he was explaining how they already operate in everyone's consciousness to deal with ultimate meanings. It seems to me that his empirical approach meets the criterion that any definition of the spiritual should make sense to non-religious people yet not exclude religious meanings.

Faith, Lonergan says, is the knowledge born of transcendent love.4 By transcendent love, Lonergan means yielding to the pull toward beauty, intelligibility, truth, value and company without restriction. He underscores how these transcendentals have no intrinsic limitations -- we can always seek more -- and whether or not we conceptualize our yielding in religious terms, when we so yield, there is no end to the values we are open to recognizing. This yielding love becomes explicitly religious when we recognize ultimate values in a Torah, a Christ, a Koran or a Buddha and decide to follow their leads in a community of likeminded believers.

For evidence that transcendent love is an independent source of knowledge, Lonergan cites Pascal's celebrated observation that the heart has reasons unknown to reason. The knowledge here is primarily a knowledge of values, and only as a result is it a set of truths. When we share love, we reprioritize what we appreciate and what we disparage in the world around us. We see eternal worth in another person; we more quickly recognize a value-rich community when we see one; we more keenly discern which of our hearts’ many inspirations we should follow. We feel empowered to be civil to the uncivil. We take on responsibilities that logic tells us to avoid. Our knowledge of values results in a set of truths -- the knowledge of facts we take on belief rather than proof, because we trust the word of those we love. By liberating our minds and hearts to see higher meanings, deeper values, and saving truths, faith lies at the heart of any social or political policies aimed at bringing out the best in us.

Such a functional view of faith seems a better approach to talking about spirituality. It avoids identifying faith with religious truths, and yet it underlies what every religious person holds as true. It also avoids a strict identification of faith with trust in God, yet it includes a trust in transcendent reality under whatever name one prefers.

Along the same lines, hope can be defined as desire rendered confident by this faith.5 Hope is a desire, not a certitude; a yearning, not a possession. It is confident because transcendent love moves us to believe, often in the face of horrendously contrary evidence, that the world is not ultimately senseless and that morality is far more than obedience or convention.

Having hope is not the same as having hopes. While we achieve some of our hopes and fall short of others, none of them has the ultimacy that makes further hope either superfluous or futile. The dying, in particular, can glow with hope even when their lives are littered with disappointments. Hope is a transcendent kind of knowledge because it anticipates a beyond, a resolution of all chaos, and an ultimate meaning to the universe whatever our personal role in it may be.

Because our minds cannot formulate what this beyond is like, we rely on our imagination to represent it to ourselves. We imagine what our family could be. We visualize world peace. We surround ourselves with symbols of transcendence: the image of blindfolded Justice with her scales; the statue we call Liberty; and the architectural renderings of façades that suggest Security in a bank and Wisdom in a university.

Religious hope works the same way in our consciousness, but it has an explicit object. We imagine God and our life with God. We create sacraments as palpable media for connecting with a God who is Spirit. We paint or carve the images that focus our attention on the divine. We compose the music that lifts our hearts to the ultimately transcendent. We write rubrics for re-enacting and celebrating holy moments. We design churches whose lines and spaces point to the obscure object of our yearning.

Such confident desire can enable a society to withstand the pressures of greed and revenge that precipitate wars. It can energize the individual to try, and try again, in the face of broken friendships, bankruptcy, or the string of slow losses that come with age. It gives healing time for the vision of faith to reverse enmities and gradually build the social systems that reflect human dignity. This functional view of hope can make sense to anyone, religious or not.

The third mode of spiritual transcendence is charity. In Lonergan's analysis, only a species of charity will halt the spiral of retribution that prolongs wars, breaks up families and drags civility down to barbarism. Charity releases us from the prisons of our unchallenged opinions by exposing us to the viewpoints of others. It raises questions in us that we never thought of, and it opens up new worlds to us when we find some answers. It is the spirit of charity that makes a couple out of two egos, a family out of a couple, a neighborhood out of families, a people out of neighborhoods. Charity is no picnic, of course, since we always lose some ego when we embrace the compromises that mutual love entails. Hesitate we may, but we are also drawn. This charity, then, is not first a standard that ethics upholds; it is first an impulse, an allure, and an invitation. We recognize this pull as ultimate precisely because we know very well it could take us anywhere.

The acts of charity are the same for both the religious and non-religious. Even the felt motivation is practically the same. A religious woman doesn't love her neighbor for a religious reason; she feels an impulse to love and she obeys. While she believes that this love is God's gift, she also recognizes that it is ultimately love that makes her life and death meaningful.

Spiritual Issues of the Dying

If these are major ways we connect to meanings that are ultimate, we can draw some rather quick conclusions about how these ways translate into end-of-life spiritual issues. By paying attention to these issues, we may be better able to envision the kind of spiritual care that the dying need. But first, a caution. Over the centuries, the terms faith, hope and charity have become exclusively religious. So, to keep our focus wide enough to include non-religious perspectives, I suggest we translate these three virtues into their correlatives as three "issues." For faith, the issue is commitments; for hope it’s aesthetics, and for charity, it’s about company.

First, consider how commitments are an expression of faith. Faith -- the values we embraced out of transcendent love -- shows in our commitments. It does not show in every commitment, but only in those where our decisions were motivated chiefly by love. We all have memories of taking a risk because we trusted someone’s word out of love. Whether this love was for God, for a friend, or even for a community to whom we feel loyal, in many of the major turns in our lives, we pivoted on our hearts, not our minds. We may recall decisions to protest injustice or decisions to defend the status quo; decisions to marry and raise a family or decisions not to marry but to live in celibate community; decisions to switch careers or decisions to stay the course. In conversations with people facing death, these are important events -- how big a risk they took, how trusting they were, how courageously they met life’s challenges. These form the golden threads gleaming in every person's biography, tying together their lists of places they lived, the awards they received, and the people they met.

These stories beg a telling as death approaches. Many people have no experience in talking about their commitments. They just made them, carried by a deep-running love that seemed like still waters to bystanders. Pastoral caregivers need to raise the topic and learn how to pursue it. They …, more delicately with those who show no interest in spiritual things, but persistently. With those who seem to have no interest in “spirituality.” Other people facing death feel an acute sense of having avoided commitments that their hearts recommended. This too is about ultimate meaning in their lives, and caregivers can help them address it. The mere willingness to listen can heal this moral wound much like fresh air heals a skin abrasion.

For a typical case, imagine a woman who admits having avoided religious commitment. That doesn’t mean she never let herself be moved by love, nor that she consciously shut down all thought of ultimates. At a minimum, effective care can focus on how she followed her heart, particularly on what her heart valued above all, whether or not she names it God.

It is important to keep in mind that the work of giving spiritual care occurs originally and essentially within the caregivers. They need to keep a few central questions in mind about the person before them – questions posed mainly to themselves. Regarding faith, the caregiver’s central question about the dying person might be Where did she let her heart take the lead?

Next, consider how aesthetic experience is related to hope. Usually, it takes images to enkindle hope. Ideas, concepts, and logic leave the heart cold. It takes images to represent the ultimates that we long for without seeing clearly. Images, however, are not the only vehicle of hope. Any raw experience that represents hoped-for possibilities will work, as long as these experiences are palpable, significant to the individual, and aesthetically inviting. For the eye, we need windows that open out on luminous landscapes, artwork with magnetic staying power, rooms and furniture pleasing to the eye and rich in reminders of the transcendent riches of home or healing or adventure or safety. For the ear, we need places of silence, places where nature can be heard, and listening places for music that lifts the spirit to divine harmonies. For the hand, we need to notice the textures and the weight of things, considering what deep associations might arise when the dying person handles them. For the foot, we need to understand what walking means for people who cannot walk far: memory can convey a profound symbolic importance for a man just to stand at a threshold, to venture out, to turn a corner, to explore, or to make it to the sink. Whether he sways in a little dance or abbreviates a genuflection, he exercises hope. For the nose, we need places where the smell of urine and feces are contained behind a dignifying bathroom door and evacuated by a good fan. For the tongue, the image of eating is literally a matter of taste. Tomato soup usually says "home" to an American, but not to a Japanese. For a man in Milwaukee, drinking means beer; for a woman in Toronto, wine. For some, eating means company; for others it's just nourishment.

Obviously, environment counts, whether for nursing homes or hospice facilities or the dying person's home. It requires sensitive attention to individual tastes. Some will want Mozart, others silence. Some want a view of nature, others art classics. Sometimes, an individual’s apparent tastes mask deeper needs. When, say, a dying man's tastes lean to mindless television, a caregiver’s gift is to probe deeper to uncover more effective symbols of hope. The caregiver’s central question might be What images and raw experiences give this person hope?

Finally, consider that the essence of charity is found in human company. Charity has unfortunately come to mean just giving to others, something we do easily for fame or a tax deduction. But real charity is both give and receive. It means entering a relationship without control of its future, and not all relationships embody this unnerving sacrifice of control. Many relationships with colleagues or siblings have little transcendence about them. What distinguishes charity is how it weaves a network of companions in the struggle – company with people who share a sense of the mystery of life, of a common concern for progeny, and of a final destiny that awaits them together.

The love they feel does not have to be restricted to the living. The elderly in particular feel company with friends who have died. Nor should this love be restricted to the human. Religious people need to talk about their love for God and God’s love for them. And even non-religious people can swell with gratitude for the gift of being able to love without necessarily thanking God.

Caregivers need to be on the lookout for who really are the main characters in the dying person’s transcendent drama, since mere personas often get in the way. More than eliciting stories, though, caregivers also need to be aware of the paradoxical birth of a new charity just as physical death draws closer -- the palpable company that the dying person and the caregiver share in this struggle. Their mutual presence is charity alive; it is a common presence to mystery; and though it doesn’t need to be talked about, it is important for both parties to feel the blessing and the gift. Aware of the present moment, then, and of the dying person’s companions in life’s mystery, the caregiver’s central question might be Whose company made her a better person?

Planning Accordingly

The essential work of providing spiritual care happens first in the caregivers. To notice the spiritual needs of the dying, they need to be familiar with these transcendent events. Some may object that they can get this only secondhand, by attending to what dying people express. But all self-transcendence in life involves dying because life’s decisions always involve a dying to alternatives. Indeed, in our major life decisions we frequently experience the adjustments that Kubler-Ross spelled out about the dying – denial, depression, bargaining, anger and acceptance. In these decisions, anyone who cannot see values beyond their logic, mystery beyond their lives, and people beyond their egos, will by default act on mere consistency or pure compulsion. The more they recognize the death in every moment, the better company they will be to the dying and the more readily will they learn life-lessons from them.

A practical service that a caregiver can give is to help the dying tell their stories. This requires an ability to drill down beneath the work histories and the photo albums to uncover the transcendent decisions that committed them to some liberating path in life and to name those friends with whom they shared a keen awareness of a beyond. Even with religious people, it is important to peel back their religious practices and uncover their commitments and company, including and especially, the company they keep with God. The primary payoff here is to help the dying become more aware and more appreciative of the spiritual dimensions of their lives. However, there’s a valuable secondary payoff as well. By recording these stories – by audio or video tape, or by writing a biography based on interview notes – surviving family and friends would inherit a poignant record of the spiritual depths of their loved one.

Transcendent concerns cannot be met without practical insights. Medical education could extend more fully to the whole person were such spiritual issues given proper attention. Architectural schools could alert students to the spiritual importance of aesthetic design. Then there’s the financial work of raising money to support this kind of care. Specialists in pastoral care deserve the wages. It costs money to create the aesthetic environments of hospice or home that keep a sense of hope alive. Fundraisers and advertising help. More to the point is to support empirical studies on the transcendent needs of the dying in a way that can be reasonably compared to their medical and emotional needs. But in the long run, funds will be available only to the extent that specific communities of people whose loved ones include those with terminal cancer, leukemia, AIDS, end-stage renal disease, multiple sclerosis, or the like become aware of these spiritual needs and join the discussion of how to allocate available healthcare funds. Education on this ancient triad of commitment, aesthetics and company will keep the question of spiritual needs alive and give a foundation for further insights and growing awareness among the general public.