The Yale Journal for Humanities in Medicine
Spirituality, Religious Wisdom, and the Care of the Patient
Hope and the Care of the Dying Patient: A Catholic, Christian Perspective
P. Sulmasy, O.F.M., M.D., Ph.D.
Daniel Sulmasy, O.F.M., M.D., Ph.D., holds the Sisters of Charity Chair in Ethics at Saint Vincent Catholic Medical Centers, St. Vincent's Manhattan, and serves as Professor of Medicine and Director of the Bioethics Institute of New York Medical College, Valhalla, NY. He is also a Franciscan friar. Dr. Sulmasy received his M.D. degree from Cornell University and completed his residency, chief residency, and post-doctoral fellowship in General Internal Medicine at the Johns Hopkins Hospital. He received his Ph.D. in philosophy from Georgetown University in 1995. He is a Soros Faculty Scholar of the Project on Death in America. He is the author of a book on spirituality for health care professionals, entitled, The Healer's Calling. He begins service as editor-in-chief of Theoretical Medicine and Bioethics in 2002.
In the final analysis, every dying person who retains the capacity to hear and to understand the call of death faces important questions about meaning. Whether these questions are addressed or ignored is totally up to the dying individual in his or her own freedom. Regardless of whether or not they are confronted, these questions always present themselves as obvious and important questions for the dying person to address. And regardless of whether or not that dying person subscribes to some particular system of religious belief, these questions are aptly described as spiritual in character.
These are the sorts of questions to which I refer: Does my dying now, as an embodied person, have any meaning here and now? Has my life, as I have lived it until now, had any meaning? Has there been any meaning in what I have suffered? Will there be any meaning in my living and dying that perdures beyond the moment of my death?
In most discussions of the care of the dying, these sets of questions have been subsumed under a word that has received far too little serious, critical reflection. The word is invoked continually, as if everyone understood clearly what it meant. But the meaning of the word and the questions it evokes in discussions about the dying are rarely clear. Questions of meaning are often subsumed under the word, 'hope'. This word has served, in some respects, as a metaphorical rug under which all sorts of messy questions about meaning and death have been swept. One is left with the appearance of a technically correct, electronically controlled, antiseptically spiritual death. "At Acme HMO, we provide what consumers want: high quality, cost-effective care at the end of life, giving our patients death with dignity and hope." Very neat.
Even well-meaning persons concerned with improving the care of the dying have moved too quickly to package these concerns under very broad labels such as "spiritual suffering" and have even dared to try to create quantitative scales to measure (and therefore to control) the spiritual experiences of dying persons. But I wonder whether this is even possible. I hear the echoes of questions raised long ago by the Prophet Isaiah. "Who has held in a measure the dust of the earth, weighed the mountains in scales and the hills in a balance? Who has directed the spirit of the Lord, or has instructed him as his counselor? Whom did he consult to gain knowledge?" (Is. 40).
Even the best of health care professionals are sometimes far too uncomfortable with the idea of the unfathomable. And so, outcomes researchers concerned with care at the end of life try to reduce the spiritual to a check box. Even in the desire to serve the spiritual needs of dying patients, medicine is in danger of sterilizing the spirit right out of dying.
But in criticizing some recent approaches to improving the spiritual care of the dying, I do not wish to imply that we cannot discuss these issues, grapple with them, and do a better job of facilitating the spiritual work of the dying. It seems obvious to sensitive persons who care for the dying that whenever dying goes awry, as it often does, it is frequently because either the patient or the caregiver has paid insufficient attention to one or another of these questions of meaning and value. We can, and should, do a better job. All I want to suggest is that empirical science will not give us the answers to these questions. Total Quality Management will not redress these deficiencies. The truly spiritual is frightfully unmanageable. Spiritual concerns are not glibly resolved by questionnaires. One cannot measure the unmeasureable.
Yet everyone has some intuitive sense of the nature of these spiritual questions, particularly as they relate to death. We seem naturally to shudder and to recoil from the possibility of a death without dignity or hope. We fear that our own end might be undignified. We wonder if there is anything in which we will be able to hope when our own time comes. However, too many health care professionals remain fearful of discussing these issues in any depth with their colleagues or with their patients.
The word 'hope' has been haplessly muddled in discussions about dying for centuries.
The Hippocratic texts, for instance, talk of lying to patients about their diagnoses, so they do not lose hope. So did Thomas Percival.
But even today, we often speak in such ways. We whisper in dark corridors about "hopeless cases". Even with the best of intentions, we write about providing better care for the "hopelessly ill". Families sometimes hesitate to authorize discontinuation of treatment because it would signal that they had given up hope.
But is anyone's dying necessarily truly hopeless? Do the dying have anything for which to hope? I think they do. And I want to urge health care professionals to clean up their language and not glibly to declare any patient hopeless. This is not "spin control" (a practice that is becoming far too common among our politicians). I am not urging propaganda, but a serious decision to correct the language and thinking of health care professionals by a careful re-examination of the concept of hope.
What is hope, after all? Aquinas writes that hope is a specialized type of desire. Hope is a desire characterized by a special type of object. The object of hope must be 1) clearly good, 2) apparent in the future, 3) difficult or arduous to attain, and yet, 4) regarded as possible to attain.
A dying person might naturally desire not to die. Most of us who survive them have this same natural desire. But none of us can really hope never to die. This is an impossibility. Since the object of this desire is impossible, it violates the fourth characteristic of a proper object of hope as set forth by Aquinas. All persons are mortal. This is philosophy 101.
But then it might seem that those who have exhausted all means of cure are properly said to be "hopeless." However, this would only be true if there were nothing more for a human being to desire than the death of tumor cells, HIV virions, and tubercle bacilli.