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When Suffering Persists....
Journal of Palliative Care, Vol.10, No.2, pp 8-13,
1994
Ira R. Byock, M.D.
In the contemporary social context of North America I can not begin to address a personal response to this phrase without dealing with the relevance of assisted suicide and euthanasia. Currently, many would argue that society - and we in the caring professions - would best respond to the issue of persistent suffering by moving swiftly to legalize physician-assisted suicide. Wherever one's stand on this political issue, it is important to understand that none of the proposed laws or guidelines would eliminate human suffering. Assisted suicide would, at most, serve a relatively few. Categories of people excluded by existing proposals include children, those who lack cognitive clarity, those who are paralyzed or who are otherwise unable to physically initiate the final act. Even if all restrictions were removed, most people who experience persistent suffering in their dying would decline to intentionally end their lives. To focus on the question of legalization of actions intended to cause death would constitute a diversion and a shirking of the current task at hand. In truth, the problem of persistent suffering is far larger and more penetrating than the issues of suicide or euthanasia.
As I explore my own ability to respond to suffering that persists, I find myself asking, "How complete is my commitment"? How absolute should it be? More questions than answers arise. How do I address persistent suffering of individual patients? How do I, as a member of a hospice team and program, address the sources of persistent suffering and the obstacles to effective clinical management? What are my responsibilities in the larger professional and social arena beyond my own community? What is my commitment? How should I respond?
As an American hospice physician the testing of my commitment has often taken the form of deciding what action to take when the obstacle to alleviation of a patient's suffering is the prescribing practices of a physician colleague, perhaps a personal friend. How assertive should I be in making recommendations to an opiod-phobic or otherwise diffident community physician whose patient remains in physical distress? When does patience and "building a working relationship" become "capitulation"? At what duration or severity of suffering?
I know that my nursing colleagues struggle with questions of how forceful to be in response to physicians' orders they know to be inadequate for their patient's needs. When does a "respectful stance" become capitulation? At what duration or severity of suffering?
Collectively, for the discipline of hospice, similar questions apply. Physical suffering among the terminally ill remains unnecessarily commonplace. Hospice services remain practically available to a relatively few. Barriers to hospice access include deficiencies in public awareness as well as fiscal, bureaucratic and programmatic hurdles. Palliative medicine has yet to achieve wide acceptance - or even recognition - within academe or the medical establishment. When does patiently "working within the system" become capitulation? At what duration or severity of suffering?
How we respond to the questions so exquisitely implied by the phrase,"When suffering persists..." has everything to do with who we are as professionals. Collectively, what we do about suffering that persists is a touchstone for the discipline of palliative care. Or so it seems to me.
For the purposes of the current discussion it is sufficient to recognize that political actions of both an incident and broad social nature can be appropriate and, at times, essential. Hospice clinicians, however, can not avoid the deeper implications of the phrase, "When suffering persists..."
From the personal, experiential perspective of the clinician, it matters little whether the obstacles to alleviation of suffering are the physical unavailability of narcotics or the reluctance of the prescribing physician or a thousand other barriers to effective symptom management; or whether the environment is a third world village, a small rural Canadian hospital, a frenzied, tertiary care teaching center, or an overcrowded urban American housing project. Ultimately, suffering is encountered one to one. If the clinician has entered into any degree of an authentic relationship with the patient and family, suffering is encountered in one's mind and in one's heart.
As a professional I approach suffering having made some effort to prepare the mind. It is, perhaps, the nature of study that it never seems sufficient. Critical contributions from the clinical perspective to my understanding of suffering have included Man's Search for Meaning by psychiatrist Viktor Frankl1 and, more recently, Eric Cassel's article and book, The Nature of Suffering and the Goals of Medicine.2,3 Frankl asserts that physical discomfort and deprivation are not sufficient to cause suffering, that suffering depends on an experienced loss of meaning and purpose. Cassel understands suffering through the construct of personhood and defines suffering in terms of conditions or events that threaten the intactness or integrity of the person.
While I do not work from a specific religious context, my own understanding has been deepened by studying religious perspectives on suffering and dying. I have been struck by important, fundamental similarities between the Christian and Buddhist outlooks on suffering. Both consider suffering an inevitable component of human life, and both discern potential purpose within suffering. Suffering can be taken on or "offered up" for the sake of others in distress. In both traditions, suffering can serve to free the person from the imperfection of human existence, providing a means of coming to God in heaven or of achieving enlightenment.
The clinician who would seek to understand suffering within these constructs while living and practicing in the modern world confronts a paradox. We can confirm from clinical observation that suffering can be associated with positive transformation, yet as passengers on this human journey through life we experience a sense of responsibility to act to lessen the suffering of our fellows. Is this sense of responsibility and the urge we feel to help our suffering fellows merely neurobiological quirks of evolution? Or, alternately, in recognizing that there can be value within suffering are we perceiving a design that is outside of the human sphere of action?
As a physician who has chosen to confront suffering and has intentionally assumed responsibility to care for individuals in their suffering, philosophical insights and the teachings of great religions primarily serve to help me address my own distress; both that which is purely personal and that which is suffered in compassion with my patients. A grounding in philosophy can provide an important support on which to lean when I am in danger of falling - or have fallen. But the contemporary clinician can not avoid the questions within "When suffering persists..." by reliance on doctrine or precepts. They are not salves that I might use to soothe the suffering of another. Applying religious meaning or philosophical value to the suffering of another risks both patronizing intellectualization and therapeutic nihilism. While I may explore the beliefs and values of the patient, what meaning there may be in suffering is ultimately for the patient, not me, to determine. As a clinician I am called to work from within the perspective of the other, meeting each person where he or she is, allowing each to move where and when able.
In pursuing some insight into suffering the medical model can take us only so far, at its edges there is distortion. For medicine suffering represents a problem to be managed; the process of dying is a progression of problems to confront. While this analytic approach is valid within the confines of the model, and while it enables organized, frequently effective intervention, it is also limited, offering no place or terms for a wide range of human experience. Whatever one's religious or philosophical perspective, if the commitment to investigation is uncompromising, at some point it becomes empirically undeniable that within the human condition there is opportunity hidden within suffering. To adhere to a vision of suffering - and of dying - as solely problematic is to sacrifice truth to preconception. More generally, the problem-based model is two dimensional; it cannot perceive the color, tone or texture of life.
At some level - as I strive to stay open to what this phrase asks, what I know of it, and what it has to teach - I realize that I may be posing the wrong questions. We tend to assume that our goal must be to extinguish all suffering. Ultimately, the problem of human suffering may be unsolvable, at least from within a modern, western world view. Perhaps, by re-framing the response to the phrase, our understanding can be advanced and options for responding expanded.
Art can be a much more articulate medium than medicine for deeper exploration of suffering. This should not surprise. "Good art" is good because it reveals more than our unaided perception. The visual arts certainly have much to teach us about suffering. I think of images as varied as Life magazine photos of famine and war, the surrealistic self-portraits of Frieda Kahlo and classic paintings such as the polyptych by Van der Weyden in France's medieval Hospices de Beaune. And we have much to learn from the poets.
A poem by Ranier Maria Rilke4 keeps arising in my thoughts as I sit with the phrase, "When suffering persists..." It is about suffering that may involve physical distress, but which extends beyond physical distress, to become all pervasive. Rilke wrote this poem as a prayer to his God, yet it reads to me like a plea from a suffering patient to all those who would seek to serve.
| It's possible I am pushing through solid rock in flintlike layers, as the ore lies, alone; I am such a long way in I see no way through, and no space: everything is close to my face, and everything close to my face is stone. I don't have much knowledge yet in grief -- so this massive darkness makes me small. You be the master: make yourself fierce, break in: then your great transforming will happen to me, and my great grief cry will happen to you. |
Rilke has defined the risk for the clinician. To suffer with; the root meaning of the word compassion. He tells us that transformation is possible. But he doesn't tell us how. I am not the master. This massive darkness makes me feel small also! It makes us all feel small.
This is precarious work. Our fear can be disabling. It can make us label suffering "intractable", which is tantamount to saying, "I give up." If I am to continue to try I must act beyond my knowledge, I must feel my way through.
Acknowledging within ourselves our ultimate "unknowing" need not be disempowering. Our task as clinicians is not to provide ultimate answers. Our task is to manifest ultimate commitment. Indeed, the unknowing can be the soul source of our clinical power. The ability to stand within, and navigate within those cold, murky waters is what we can give to those persons whose suffering is not relieved by our protocols and our potions. Can we discern direction within those foreboding currents? Can we begin to imagine a light somewhere ahead? Can we risk movement in those waters? Can we take action despite our own peril, despite the danger to ourselves and to whom we think we are?!
When confronted with persistence of suffering, hospice care providers must delve deep - asking of our unknowing what we might do. This is a place where algorithms do not apply. Adeptness here has more to do with being able to empty and listen. It seems to require an element of surrender. In addition to our medical knowledge and skills, if we are to be of service in the face of the persistent suffering, it seems we must allow ourselves to become a vehicle for a more profound and subtle knowledge. Some would call this God, others intuition. Maybe Rilke told us how to break in after all. Perhaps, to the extent that I am able to make this transformation, to surrender my intellect to a deeper, more intuitive wisdom, I can for the moment of caring interaction be the master.
If we are to approach suffering with heart as well as mind prepared, some form of inner practice becomes essential. While the unknowing and the mystery may remain, the task of navigating within can become more familiar. On the level at which I am able to bring words to this deeper way of responding to suffering a central defining component is the imagination. Imagination may be, in fact, the most potent tool of the clinician; it's power limited only by our ability to use it.
There are two broad ways in which imagination can be clinically applied. There is, firstly, the receptive imagination. Here imagination is a means of achieving genuine empathy with the patient. Arthur Frank has spoken in terms of coming into "imaginative alignment" with the patient.5 To be effective I must be willing to look at the world from behind the eyes of the suffering patient, as clearly as I can imagine. To do so requires a willingness to share the pain of the other. I can never directly know the suffering of another and must never say, "I know what you are going through". Yet in saying, "I can only imagine how hard this is for you." I can communicate genuine compassion, assuming the statement expresses a genuine willingness to invest the emotional energy and to accept the personal risk that such imagination entails.
From a position of imaginative alignment with the suffering other, the clinician can employ a second, therapeutic aspect of imagination. This is the active or generative imagination. I can survey the personhood of the suffering other from within and look out at the world from within the perspective of the other in an effort to discern even the faintest glimmer of possibility for relief and release. I can listen, watch and wait. To effectively utilize this creative force we must cast aside our assumptions and look beyond authority and science. Instead, we must mine our imaginations. When we do so surprising possibilities can arise. The creative energies of the clinician joined to those of the patient can then actualize the fruits of the imagination.
This briefly sketches my understanding of the theory and mechanisms by which imagination can be clinically applied. Yet, I do not want to lose the essence to the esoteric. Much of what I do in a psychotherapeutic regard - often within the context of routine evaluation or symptom management visits - I have come to understand as relying on imagination.
At times when I ask a patient to tell me of their suffering they speak of being a burden to their family. I may ask them to imagine how they would feel if they were well and another family member were dying. "Oh, I would be sad, but I would want to care for them," is often typical of the reply. I reflect on how important it can be for family members to express the love and reverence they have for a departing loved one through the care they can give, how it can help them in their grief. "Is it possible for you to consider (imagine) that in allowing them to care for you, you are giving them a gift?" For several patients, this has been the veil between suffering and peace.
The stories of the persons who are my patients frequently have provided the key. As I listen to a person tell of their suffering there may be a strong sense of loss of all meaning and purpose. I listen for what has meaning for them. I try to imagine how their story might end that could bring a sense of completion - or even triumph.
At times I will invite the patient to look at the events of his or her illness as the middle portion of a poignant novel. "If we knew the hero or heroine could not survive, what would be the best possible outcome of the story? Can you imagine, or can we together imagine, perhaps a final two chapters that might leave the reader sad, but also feeling happy for the protagonist and with a sense of fullness and completion?"
Sometimes the ideas that arise are simple and readily attainable. A final family gathering in which important things get said; not only old hurts, apologies and forgiveness but also expressions of admiration, affection and appreciation. When listening, as the speaker, to the story the patient tells, I may become aware of an inability to experience self-love. I will then listen for an opportunity to simultaneously explore and teach self-love. Despite the depth of the work done, these sessions are typically lighthearted and refreshing.
At other times the tone is more ominous and the work more scary. I think of David who at 53 was too young to be leaving his wife and three children. David had always had a bad temper, however as he became more ill from the lung carcinoma in his chest and the metastases in his head, episodically his temper exceeded his control. The outbursts were frightening for his family and care providers.
David would freely discuss the proximate nature of his death. Yet the emotional denial, which had served him well through long months of surgery, radiotherapy and chemotherapy, now left him unable to be a peace within himself or within his family. Anger seemed familiar to him, almost comfortable, while sadness was unknown and terrifying.
I respected David's right to denial. At first, my involvement was merely supportive and supervisory via the hospice team. Corticosteroid, antidepressants and anxiolytic medications were monitored and adjusted. Two months after I first met David the eruptions of his anger increased in frequency and severity and he began having some paranoid delusions. Out of concerns for the David's safety and that of the family and in order to preserve her husband's dignity, David's wife, Bonnie, insisted that something had to be done. With her firm agreement a plan was devised. David was approached and during an encounter that required every ounce of confidence and resolve that could be mustered into a calm demeanor, he was hospitalized on the mental health unit (MHU). The admission was officially "voluntary", but clearly against his wishes.
Try as I might I could not imagine a way through the suffering of David and his family that did not involve piercing David's denial, forcing him to face the profundity of losses, both current and impending. Casting aside all pretense of psychological technique, I gently told David what I felt he needed to do. Initially on the MHU he refused to talk with me. Instructions to the staff were to do what they could to make it safe for David to acknowledge and confront sadness. I told them that if David was able to cry we would have done him a service. Further, if he were able to once more tell his children how fiercely he loved them, and how much the loss of fatherhood meant to him; and if he once again told them how proud he was to be their father, a major service would have been done. And that was it.
The unit staff did their job well. Thirty-six hours later when I was visiting David he looked up at me and said, "Doc, somebody should have done this to me twenty years ago. This has been the most wonderful experience of my life." Although David did not go on to die an easy death, his suffering greatly lessened. In addition to their sadness at the loss of their husband and father, David's family reports having experienced a sense of resolution and completion that has endured.
While shaped and refined by our knowledge, skills and experience, when our response to persistent suffering of the individual before us is authentic, it will come from the depths of our self. It will be creative, imaginative and, often, unpredictable.
Several remarkable examples from the recent palliative care literature come to mind. Michael Kearny documents the clinical power of imagework in the management of otherwise uncontrollable pain through the stories of patients Eammon6 and Sean7. In Final Gifts hospice nurses Maggie Callanan and Patricia Kelley record case after case of "nearing death awareness" in which the apparently confused, delusional mutterings of dying patients were revealed as significant and meaningful through the receptive imagination of the clinician.8 Generative imagination was then applied to gently guide the person toward resolution of inner conflict or successful completion of inner work that the patient had experienced as undone. Peaceful transition from life was the clinical outcome.
The task of confronting suffering is rightly approached with humility. When suffering persists, if our interventions are to have any hope of succeeding, they must also be courageous. Make yourself fierce, break in. This is not - and must not become - reckless confidence. When suffering persists our continued commitment to act for the good of our patient necessitates acting without certainty; indeed, if certainty existed the suffering would previously have been resolved.
This "deep work" of hospice entails risks inherent in taking action without certainty. The theoretical risk to our patients of making suffering worse, can be effectively avoided if we are careful to act with selfless, loving intent. The risk to ourselves as clinicians includes the possibility of failing, thus, wounding our concept of who we think we are. Even success is not safe, for as the cases cited imply, in being effective we may risk appearing outrageous to others - especially those within the medical profession. While ethical guidelines must be respected, if one's commitment to approaching persistent suffering is subordinated to some allegiance to a detached, professional demeanor, some suffering will, inevitably, remain untouched.
I think about the consults for medical management of a patient's confusion that have turned into an hour at the bedside coaxing a patient to tell his or her stories. On reflection I often wonder whether my colleagues in emergency medicine or cardiology would consider this an outrageous way for a doctor to be spending clinical time. Yet there are moments when eliciting a patient's story can be the urgently needed intervention. Though less dramatic than the intravenous administration of adenosine or procainamide it can prove no less effective in helping the body to re-establish a healthy rhythm.
Thus, "when suffering persists...", the task for the hospice clinician is to imagine interventions that are consonant within the personal matrix of the individual patient and that can serve the person to retain, to regain or, for the first time, to realize a sense of intactness and integration. Successful interventions can actually assist the patient to uncover an enhanced sense of meaning and purpose within their personal experience of dying and discomfort.
I have asserted elsewhere that the paradox represented by those patients who are able to achieve an enhanced quality of life during their dying can be explained by realizing that personhood is dynamic and that the potential for human growth extends through the very end of life.9,10 The personhood of the dying individual may change rapidly, and dramatically, as various aspects or spheres of identity are lost to disability, fall away from being no longer relevant or are consciously completed and released. The person "dying well" is somehow able to accept the progressive simplification of personhood and retain an experienced sense of integration. In this model the person remains integrated while becoming progressively less dense or corporeal, and progressively more light or ethereal as death approaches.
The persons I have known, who in the midst of their dying have experienced relief from profound suffering, have in one or other way surrendered who they were to a new reality of who they are. So often the membrane between suffering and relief has been pierced by surrender. Where there was profound suffering, there is then release and, commonly, exhilaration. Often patients report an experienced sense of connection to a timeless, enduring construct. Characteristically, the experience of transformation is understood within the framework of the patient's own culture and religion and is expressed in the terms of that tradition.
The transcendent realm looms for the dying person. This is repeated clinical observation, not religious dogma. Among the dying most suffering that is not based in physical symptoms derives in some way from the loss of critical aspects of the self. Yet, dying is inevitable; the loss of our selves inevitable. Suffering is the alarm that will not stop ringing, it demands attention to the inevitable. Despite its horror, the suffering associated with dying can serve to stimulate growth as no other human experience. It is an opportunity no one would ask for, but must not be ignored. Again, the prevailing medical model will not admit such observation, has no place to put it. Perhaps we need to incorporate more of the wisdom of the world's religious traditions into the care we give in our programs and institutions.
My experience - and the collective experience of those in palliative care who remain unflinchingly committed to our dying fellows - is that suffering can be always approached. Our experience teaches that transformation of suffering is possible. We must come to this task with preparation of mind and heart. We must soothe whenever we can and must bear witness always. When suffering persists, the authentic responses will be as unique as are our patients, and as we are ourselves. We can serve the suffering person of the other best if we, ourselves, are willing to be transformed - and if we are willing to let the great grief cry to happen to us.
Bibliography
- Frankl, VE., "Man's Search For Meaning", Washington Square Press, NY,NY (1984)
- Cassel, EJ, Nature of Suffering and the Goals of Medicine, N Eng J Med 306:11 1982 639-641
- Cassel, EJ, Nature of Suffering and the Goals of Medicine, Oxford University Press 1991
- Rilke, RM, in Selected Poes of Ranie Maria Rilke, translation by Bly, Harper & Row 1981
- Frank, A, What have we learned about suffering: A Patient's Perspective, plenary address, IXth International Congress on the Care of the Terminally Ill, Montreal, Nov 4, 1992
- Kearney, M, Palliative medicine - just another specialty?. Palliative Medicine 1992, 6 39-46
- Kearney, M, Imagework in a case of intractable pain, Palliative Medicine 1992, 6 152-157
- Kelley, P, Callanan, M, Final Gifts, Poseidon Press NY, NY (1992)
- Byock, I, Growth: The Essence of Hospice, Am J Hospice Care, Vol. 3 No. 6 Nov/Dec 86 pp 16-21,
- Byock, I Growth: A Paradigm for Hospice Care, workshop presentation, IXth International Congress on Care of the Terminally Ill, Montreal, Nov 3, 1992
Journal of Palliative Care, Vol.10, No.2, pp 8-13, 1994
Ira R. Byock, M.D.
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