Lessons from the Dying


The major lesson for the living to learn from people facing the end of life is how growth can come through loss. Those who open up to these crises have much to teach.

People living with a life-threatening illness can encourage others to recognize their own priorities; to care about how they relate to others; to use time wisely; to say the simple words of apology and thanks and goodbye; to be honest about anger, protest, and negative feelings; and to recognize the releasing and positive elements of these feelings. Relationships may be healed, anger and resentments laid aside, and sources of meaning discovered together with a new sense of self. Those who are dying can teach others to hold on to hope and to cherish relaxation and creativity.

How do people learn these lessons? They will not do so unless they come close to those who are at the end of life. They will not do so unless they open themselves to true communication, not withdrawing behind often inappropriate activity. People learn when they involve themselves in competent and compassionate practice. They also learn by listening to the stories.

Perhaps the best lessons to be learned are from the patient whose last weeks of life in early 1948 proved to be the inspiration for the modern hospice and palliative care movement. David Tasma, a Polish Jew, died at the age of forty of malignant disease. He left a demanding heritage but full of potential for those who were to take up the challenge of his requests. His small legacy gave a start for St. Christopher's Hospice. In few powerful words, "I'll be a window in your home," he gave what became the founding principles of hospice. Reflection on this phrase grew into a commitment to openness, not only to all who would come for care but among those who would welcome them; openness to the outside and those who would come to learn; and, finally, openness to all future challenges.

Tasma challenged future learning and scientific study with his plea, "I only want what is in your mind and in your heart." Hearing David's appeal for comfort led researcher Cicely Saunders's mind and heart to learn about pain. A surgeon challenged her, "Go and read medicine. It is the doctors who desert the dying and there is so much more to be learned about pain. You'll only be frustrated if you don't do it properly and the doctors won't listen to you."

After medical training, and over the next seven years (1958–1965), Saunders studied hundreds of patients with end-stage malignant disease. Saunders recorded on tape their expressions of "total pain" with physical, emotional, social, and spiritual elements that make up the whole experience of overwhelming sensation. Their descriptions of such suffering and subsequent relief led to a researchable hypotheses: Regular, oral medication with opioids matched to individual need, constantly reviewed and supplemented with the control of other symptoms, would avoid both increasing doses of medication and drug dependence. Patients given space by freedom from the threat or presence of pain showed how fully they could use the chance to live the end of their lives with character and dignity.

This basic method, learning about pain from people in pain, is now being used around the world. There has been worldwide spread of effective and culturally sensitive ways to meet the needs caused by pain. The work has brought comfort and strength to countless numbers of those facing bereavement and the continual challenge of living on after profound loss. This lesson from those with terminal illness enhanced the humanistic aspect of the practice of medicine as well.

In Experiment Perilous, the sociologist Renée Fox illustrates the same theme of learning. She described how a group of doctors, researching the early use of steroids in a ward of mostly young men with various life-threatening conditions, came to terms with uncertainty. During the months of her study, Fox observed that in many ways the patients were the leading players. Like the doctors in this new field, they struggled with uncertainties, and their various ways of coping were remarkably similar. Working as a team led to positive outcomes on both sides.

These lessons illuminate living with and after loss. Worldwide, workers in bereavement support resonate to the same theme. They are not merely dealing with a long defeat of living, but are witnesses to a positive achievement of dying.

Another lesson is in the common theme of human dignity enhanced by the assurance of worth. This philosophy is summed up in the words, "You matter because you are you and you matter to the last moment of your life. We will do all we can not only to help you die peacefully, but to live until you die" (Saunders 1976, pp. 1003-1005). The message of Mother Teresa, the Buddhist hospices of Taiwan, and the palliative care teams of New York are one and the same as this, though their practice and resources are widely different. The end of life can be desperately unfair as health fades, relationships sour or are broken, and parting can be agonizing. Yet if there is honesty about the negative feelings and reactions, there can be a positive outcome.

Paula, a cancer patient still too young to be facing death, suddenly asked a night nurse what she believed was to come. On receiving a simple answer of faith, Paula said, "I can't say I believe now, not like that. Would it be all right if I just said I hoped?" As this was affirmed, she handed over the false eyelashes she had worn day and night, saying, "You can put them away. I won't need them anymore." The spiritual needs of the dying are not merely appropriate rituals of their religion but far wider, as relevant to atheists as to believers. Practical care needs can be met in an atmosphere that helps the dying find sources of meaning, search and question, be listened to with respect and, if asked, be answered with honesty, even when the answer can only be "I don't know."

A few patients maintain denial to the end. They heroically refuse to face defeat. But most of the dying exhibit how honesty is more creative than deception in human dealings with one another. A man having been told the truth of his approaching death said to his doctor, "Was it hard for you to tell me that?" And then, "Thank you, it is hard to be told but it is hard to tell too." It should be hard; the lesson here is that people must care what they do with their words. Words can hurt or heal; they can open or close exchange and development. People should care how the recipients of their words are affected by their delivery, whether the moment or manner was right. Nor must people forget that others need "time off" from difficult words and truths, which is not the same as denial. Discovering new talents, being creative, and celebrating are important elements in life's ending, as well as throughout it.

The important lesson is surely to recognize priorities and give them true space in one's thinking. As the dying lose so much, the living see how people matter more than "things." Expressed in many ways, the search for self is a reminder of what will remain. As the English poet D. H. Lawrence wrote:

       There is nothing to save, now all is lost,
      
But a tiny core of stillness in the heart
Like the eye of a violet.
(Lawrence 1959, p. 117)

People need to look at what really matters, what they will look to as they respond to the urge to move fast in the final crises. For many, it is still in the beliefs that have lasted throughout a lifetime. Many, too, have no religious language but turn to symbol or metaphor. They can be helped to find their own way by sensitive pastoral counseling. As one patient, finally managing the essential step of letting go, said to a sensitive nurse, "My hope is that it will lead me into peaceful waters, sailing on a calm sea. I have expended so much anger in the past and have longed to get rid of it. It seems that this tragedy has taken me on that path at last."

For the professional, the anger that is part of compassion can be a force for change. The movement for hospice and palliative care has spread around the world as a protest against pain and isolation in confidence that every person matters and that there is a better way.

The dying teach professional caregivers that all people need to be accepted. Every person needs to give as well as receive attention, concern, or love. The professional who is prepared to come close will see how ordinary people overcome adversity and make it the means for growth. There is no hierarchy among such achievements. Who is to say who has done best? Is it the young woman who fills a day center with creativity and a feeling of discovery for weeks on end, never showing how much it costs her? Or is it the old reprobate who manages to stop grumbling for his last few days? There is no place for idealizing each other or for denying that ill-led lives may also end badly.

Coming close to those who are at the end of life and opening up to true communication leads to learning and rewards. The dying teach their caregivers to look at their own needs and the priorities of life—and to never forget that time off and recreation are essential to continuing this particularly taxing work. Hope can rise up in the most adverse circumstances. It is not what death does to the deceased that their loved ones remember, but rather how the dying challenged those living to look at their thoughts about death and respond to life's challenges.

See also: Good Death, The ; Hospice Option ; Saunders, Cicely

Bibliography

Fox, Renée. Experiment Perilous. Glencoe, IL: The Free Press, 1959.

Hammarskjold, Dag. Markings. London: Faber and Faber, 1964.

Hinton, James. Dying. Middlesex, England: Penguin Books, 1967.

Lawrence, D. H. Selected Poems. New York: Viking Press, 1959.

Saunders, Cicely. "Care of the Dying: The Problem of Euthanasia." Nursing Times 72, no. 26 (1976):1003–1005.

Saunders, Cicely. The Care of the Dying. London: Macmillan, 1959.

Tolstoy, Leo. The Death of Ivan Illych. 1886. Reprint, Oxford: Oxford University Press, 1959.

CICELY SAUNDERS



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