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Living with Dying: Developing a Positive Relationship with Death
Paul N. Duckro, Ph.D.

There was a time, in the great post-war (WWII) culture of the United States, when death was more or less hidden. Everything seemed so vibrant. Limitless progress lay ahead.

One wag put it this way. “During a recent tour of the world, it seemed to me that national attitudes about death are remarkably varied. In Germany, for example, death was inevitable. In Ireland, death was imminent. But in America—ah, only in America—death was quite clearly optional!”

People died, of course, during this lively time, but the consciousness of death was on the periphery of the great swirling experience of life.

It was not so different in religious communities and diocesan presbyterates in the United States. Religious vocations were plentiful. Catholics in America were more integrated into the national dream, but they remained quite loyal to the Church and its practices. Parents were honored to send children to formation programs. The number of religious and clergy was swelling, with the median age shifting decidedly in favor of the young. Great youthful energies were unleashed in apostolic works of all kinds. Massive building projects attested to the substantive nature of the communities they housed. It was a commonplace to have two or three priests per rectory.

Then something happened. In the population at large, the median age began to creep up. Among Roman Catholic religious and clergy, it seemed to rise exponentially. Ranks were thinned as current members left. Entrants to formation were scarce, and many, once in, opted out. In smaller, aging communities and presbyterates, death was not only more frequent but more noticeable.

And so it has progressed. In every family, and in every community, death has become a familiar. In some congregations, there are so many wakes, so many funerals, that they seem an unbroken stream.

As people of faith, whether religious, clergy or lay person, in a professional capacity or as friend or family member, we are often asked to walk with those who are dying and those who are grieving the loss. As we face our own aging, we are brought personally to speak with death. We lose friends and family. We get sick. We are injured. We cannot do what we used to do as well, as often, or as long.

Death demands our attention. The question has been what sort of attention to give it. The problem is no less thorny for religious than healthcare professionals, for people of faith than for the population at large.

To be sure, our religious faith has been a great asset in facing death with courage. It is well documented scientifically that people of strong, intrinsically meaningful religious faith suffer, on average, less distress about death, and even live, on average, healthier and longer lives.

The reaction to death’s greater presence in our culture has run the gamut. In some cases, the reaction among people of faith has mirrored the response in the larger population. Especially at first, some responded to the coming of death as if they were fighting a “rear-guard” action. Each new illness and each exacerbation that signaled the growing momentum of dying was to be fought. Predictably, these efforts produce long, expensive and painful dyings.

On the other hand, other people of faith (not the least some elder religious and clergy) have seemed not to experience death on an emotional level. In some cases, these elders have appeared so anxious to “join their Maker” that they were waiting for death as one might wait for a bus, death being the “vehicle” to transport souls to heaven. The natural grief was remarkable for its absence. If leave-taking is indeed “sweet sorrow,” then perhaps only the sweetness was being tasted.

Matters have improved over time. People of faith, as is a larger proportion of the population at large, are giving the process of dying its due. In our homes and motherhouses, nursing and assisted-living facilities, death is more often recognized as a transforming experience for all who enter it with some desire to surrender. It is, after all, the one experience that is truly universal. Where it seems (in our pain) to isolate us, it does (in fact) unite us.

Still, there is so much to learn and so much yet to do. In this essay, we will consider something of what emerged in a recent study conducted at Saint Louis University School of Medicine and sponsored by Supportive Care of the Dying: A Coalition for Compassionate Care and the Project on Death in America.

In that research, a team was formed including both health and pastoral care professionals. This team developed a format for sharing with and learning from persons (and their family members) living with life-threatening illness. We set out to consider the best ways health and pastoral professionals might accompany them in their living and dying.

Perhaps the most compelling outcome of this research was the reiteration of the need for a more holistic approach to end-of-life. The ethical and the biomedical dimensions are, of course, very important. A sense of personal control in the dying and the management of pain are two very common concerns. However, equally important, were the psychological, the relational, and the spiritual dimensions of our dying.

It is the latter dimension, which we call the psycho-socio-spiritual aspect of end-of-life, that is too often overlooked. For example, one of the main ways in which well-meaning persons have tried to introduce positive change has been the empowerment of the dying, giving to those letting go of this life the opportunity to choose how much and what will be done by healthcare professionals to prolong life.

Typically, the first efforts to address this goal were quite rational and technical in nature. “Advance directives” were written, sometimes-extensive documents seeming to exhaust every possible procedure in any conceivable eventuality. Ironically, these detailed preparations often had little impact on the process. At the time of dying they were often forgotten.

More recently, there has been a flurry activity bringing needed attention to pain control at end-of-life. Pain management at end-of-life is often inadequate and intolerable pain is one of the most common fears associated with anxiety about dying. However, the attention has been limited in scope. Almost always the discussions include only medication and other physical procedures.

Approaching end-of-life decision-making solely as a rational or biological matter does not get to the point. The optimal response to death anxiety cannot be limited to another form or another medical procedure.

In a more holistic approach, we reach toward the experience of dying and of being left behind. This experience will of necessity include our interior process, our relationships with others, and our connectedness with the Divine Mystery.

In a more holistic approach, we seek not so much for “what” to say as for “how” to speak. The model is not a script, but a way. In our research and in our clinical work, we have found the process of conversation to be the model that best incorporates the elements of that way.

Good conversation is marked by mutuality. It embodies a back-and-forth. It includes listening as well as speaking. Sitting close in silence marks some of the most poignant moments of conversation. What could be better suited for the difficult process of being with and working out the dying of self or another.

So, we might well ask, if this model is so good, why don’t we use it more naturally?

Most of us are not all that comfortable with death. It is anxiety-provoking. The death of another is an echo of earlier deaths we have suffered, the loss of family and friends. It is a “forward echo” of future deaths, including our own. Sometimes we seem to need some kind of psychic seatbelt to stay present to what we fear and cannot control. It is a difficult thing to come to acceptance of death in an honest way.

It also feels so awkward to talk about it with the dying person or to those close to him or her. Will I say the wrong thing? Will I disturb him further? Does she know?

These issues are as salient for healthcare and religious professionals, who deal regularly with dying, as for family members and friends. In confidential groups, another part of the Saint Louis University research project, physicians spoke of their first encounters with death, often the loss of a patient early in training. Because feelings are suppressed in the effort to maintain what many take to be a professional demeanor, the trauma may linger for years and influence future behavior with dying patients and their families.

In clinical practice, we see many physicians who still will not speak truthfully to the dying patient. They express fear of disturbing the patient, of causing him or her to lose hope. For this reason, among others, many patients never make it to hospice-type care, and many others are referred only very late in the process.

In fact, our own research and that of others suggest that the dying and their families do want to talk. They want to talk about the treatment decisions and the pain management, but not only about these things.

They speak about the suffering, but at the same time they emphasize the importance of remaining conscious and aware. They speak of forgiveness and concern for those left behind. Critical questions arise about the meaning of their lives, the coherence of their stories. Poignant questions arise about what will be; doubts regarding matters of religious faith are cautiously voiced. Visions and dreams beg for validation and exploration.

Not only do they want to talk, they do better when they talk. Death anxiety declines remarkably when medical teams take the time to discuss dying honestly. Families are healed by the salve of expression and care. Friends find hope and meaning for their own journeys into night.

Little by little this kind of holistic conversation is becoming more common. It is being practiced in hospitals and clinics, homes and nursing facilities. The education and research sponsored by various organizations are changing the attitudes and practices of medical personnel. Most importantly, family and friends more often allow the difficult subject of dying to be broached in the course of everyday care and relationships, which is where it belongs most of all. This is a good development. We need to build on it by starting these conversations earlier.

Dying does not occur in neat, orderly scenarios. Dying may occur suddenly or come quickly with acute disease. Just as likely, dying may be a long process. The first personal brush with death may come in the form of a new and serious diagnosis. Often, however, medical science is so effective that after a period of intensive treatment we enter a long period of living with that diagnosis. This period may be marked by ups and downs, or it may be a time of remission, remarkably free of symptoms. Sometimes the remission is long enough and peaceful enough that we speak of cure. Death, when it comes, meets us in another form.

The clear implication is that conversations about death cannot be reserved for the last moments. We don’t know when those moments will be; too often, we wait too long. We must begin when it is possible to begin, when the shadow of death first crosses the threshold of our consciousness. If we are to unwind fears and resistances, work through old hurts or fresh doubts, we must have time to do so. Time allows for nurturing trust and working through missteps.

We may begin such conversations when we are well, brought to the subject only by growing awareness of the reality of death. Although in this essay we have focused on facing dying as a consequence of serious illness or injury, entering mid-life is also a stimulus. We come to understand in a deeper way that we will die. To paraphrase Tolstoy, any person younger than 30 who thinks often of death is depressed; anyone older than 50 who does not think of death is out of touch.

We certainly should begin them when a diagnosis awakens us to that reality in its own shocking way. When the initial treatment is successful at forestalling death, and especially when the period of remission is untroubled by symptoms, the task is particularly complex. Having seen the face of death, there is no way to live any longer in ignorance, unless we choose to live in denial. Yet, the business for the present is living. This requires holding death and life in tension, living in the light of death. Maintaining awareness of death without becoming morbid was captured in one of the mottos of the research project, “to live until we die.”

We must do better also at acknowledging the meaning of accelerating illness, when death is near. How often we have heard in our work the denial that leads even a medical professional to deny the nearness of death, all evidence to the contrary. Death’s arrival cannot be predicted with certainty, but it is certainly possible to recognize the increased odds of dying. When we see it, we must get better at saying so. To continue to talk only about life at the very doorstep of death is madness. The idea that bringing up the subject will “cause the patient to lose hope” is paternalistic and, in most cases, absolutely wrong.

How do we begin such conversations? How do we as friend, minister, or healthcare provider talk about death with the dying?

In any given situation, there is no template for the “right” way to proceed. Courage and sensitivity are the bywords. There are many messages that are communicated in body language and tone of voice. We can open up subjects but back away from them if the message suggests that the other is not ready. We can ask, checking out our understanding.

It is important to listen for and bring out the affective dimension of the conversation. We listen for the feelings and comment on them. We allow our feelings to be recognized and expressed. Feelings are also part of the family dynamics. One member of a family may be ready to talk while another is actively avoiding the subject of death. There may be a desire to heal old wounds, but a fear that bringing them up may jeopardize a fragile truce.

We do well to use the language that best connects us. With one person, it may be explicitly religious language. With another, the psychological perspective, so pervasive in our culture, will be better suited. It is possible to be holistic in either language. Cultural differences, age differences, the circumstances of death and the like will also influence the nature of the conversation.

System changes are also necessary. Our research team at Saint Louis University developed a group discussion guide that can be implemented to open up the subject over varying lengths of time in small, intimate groups.

Such groups can include significant others, and can be used in a wide range of settings. They are adaptable for persons newly diagnosed or living with life-threatening illness over the long term. They can be used with persons who are beginning to face the reality of death only by virtue of their own aging.

These groups do provide useful information, but they go beyond healthcare decision making, assertiveness with medical personnel, and options for pain control and other supportive therapies. The real impact of such groups results from the sense of connection that is developed in the course of sharing honestly with others who share similar experiences. Members report a significant increase in their sense of well-being, rooted in the religious and spiritual dimensions of their lives. Such is the power of connecting with others, in the groups and in their lives outside.

In the end, no one cheats death. It is an integral part of our living.

Accepting death and surrendering to it reduces fear, and therefore enhances life. To live in the light of death is no empty phrase. Life is “real.” Death is “real.” When we embrace life and death together, we are the most real. We live most vibrantly. All things transient are the more, not less, precious.

In our homes, our communities and our treatment centers, with those we love as friend or servant, we can do better at opening ourselves to the psychological, social and spiritual process of dying, and thereby open us all to the only medicine strong enough to heal it.

By focusing simply on the present we find our way to the eternal and the whole. Another of the mottos of the Saint Louis University project was “to love well is to live forever.” To know one is loved is to know that one’s life has meaning. To feel love and express it in relationship is to live that meaning in praise and thanksgiving. Only Love is as strong as death. (Song of Songs 8:6)

Suggested Readings

Duckro, P.N., Magaletta, P.R. Benefits of a life reviewed. [Life review: A naturalistic therapy to improve quality of life among elderly clergy and religious.] Human Development, 1995, 16(2), 14-17.

Duckro, P.N., Chibnall, J.T., Videen, S.D., Miller, D.K. The psycho-social-spiritual approach to end-of-life. Supportive Voice (The Official Newsletter of Supportive Care of the Dying: A Coalition for Compassionate Care), 2001, 7 (2), 1-3.

Miller, D.K., Duckro, P.N., Videen, S.D., Chibnall, J.T. Spiritual-emotional-relational support groups: Helping patients with life-threatening medical conditions live until they die (Operations Manual). Saint Louis University, St. Louis, MO, 2000.