Clinics in Geriatric Medicine, Vol. 12, No. 2, pp. 237-252, May 1996.
Ira R. Byock, M.D.
Hospice Medical Director, Partners In Home Care, Missoula MT
Chair, Academy of Hospice Physicians Ethics Committee
|"[A] young medical student working in our [palliative care] unit some years ago... pointed out that if a newly admitted patient was asked to list ten things he hoped we would relieve to make his life more bearable, no less than eight were physical the others emotional. If asked the same question 4 or 5 days later, he would list only five physical and the rest would be psychological and social. If after a further 5 days the same questions were asked, he would scarcely mention any physical problems but always would he now include spiritual ones. clearly not all the physical problems had been removed but the edge had been taken off that side of his suffering, and now he felt free to ventilate other needs and at last to open his heart to us." 4|
As with any other critical clinical parameter, routine reassessment of suffering is essential. Both the level of intensity and the quality of the professional care provided can powerfully influence the person's experience and quality of life during the dying process.
Symptom management remains the first priority for the prescribing physician and the palliative care team. Without effective control of severe pain and other sources of physical distress, quality of life for the dying person will be unacceptable. The patients that hospice and palliative care programs serve are among the very sickest in the health care system. When the level of care is adequate to meet the needs of the patients and families served, hospice and palliative medicine becomes a form of intensive care.
A patient who is experiencing severe pain or dyspnea or agitated confusion must be considered a medical emergency. No less emergent is the suffering of a person whose physical symptoms are controlled and whose agony derives from the sense of impending disintegration or the loss of meaning and purpose in life. The appropriate response to situations of high clinical acuity will commonly require multiple members of the clinical team and consultations with appropriate specialists. In the effort to control symptoms and suffering there is no medical evaluation or intervention that is inherently disallowed on the bases of cost or complexity. Interventions likely to yield short term comfort, but which carry potentially serious long term side effects, may be indicated. Each must be judged in the context of achievable goals and the preferences and priorities of the patient and family.
Fortunately, suffering among the dying is not universal; in palliative care settings, unremittent suffering is becoming quite rare. Most people do achieve relative comfort and an acceptable resolution of interpersonal and internal conflicts during the months, weeks, days, or even hours before death.
Opportunity at the End of Life
Any examination of the human experience of dying would be incomplete without exploring the nature of opportunity at the end of life. Ironically, and in contrast to sudden or traumatic deaths, the process of dying from a relentlessly progressive illness embodies a number of discernible opportunities which range from the fairly mundane to the frankly extraordinary. A survey of the personal experience of dying must confront the clinical observation that some people emerge from the depths of suffering -- and the virtual disintegration of the person they once were -- to report a sense of wellness as they are dying. While seasoned geriatricians and hospice providers confirm the existence of such seemingly paradoxical transformations, the frequency of these experiences is not known. Here again, systematic clinical studies are lacking and we must learn what we can from empirical observation and anecdote.
|"From time to time, a terrible event happens to someone, and yet the survivor finds herself or himself better off. Through injury, a person is rendered paraplegic, or even quadriplegic; cancer strikes, requiring debilitating chemotherapy and raising the specter of a shortened life. The person suffering the calamity transcends the suffering and the loss finds new meaning in life. Living becomes a richer, more satisfying experience and, in extreme instances, people feel that they never really appreciated life until their tragedy." 7|
Actor Anthony Perkins arranged for the following statement to be released posthumously:
|" I chose not to go public because, to misquote Casablanca, I'm not much at being noble but it doesn't take much to see that the problems of an old actor don't amount to a hill of beans in this crazy world. There are many who believe that this disease is God's vengeance, but I believe it was sent to teach people how to love and understand and have compassion for each other. I have learned more about love, selflessness and human understanding from the people I have met in this great adventure in the world of AIDS than I ever did in the cutthroat, competitive world in which I spent my life." 1|
A few years ago, on the completion of a workshop presentation I had given on end of life care, a woman stopped to speak with me and offered me a copy of the last letter her son had written to her. She asked that I use it if it seemed meaningful to others.
|"Dear Mom, This last part of my life could have been very unpleasant, but it wasn't. In fact, in many ways, it has been the best part of my life. I've had the opportunity to get to know my family again, a chance very few people have or take advantage of. I've enjoyed a life full of adventure and travel, and I enjoyed every instant of it. But I probably never would have slowed up enough to really appreciate all of you if it hadn't been for my illness. That's the silver lining in this very dark cloud... When you get down to it, I'd have to live several hundred years to fulfill all the dreams I've had. I have done pretty well with the time allotted me, so I have no regrets... "|
"If anyone ever asks you if I went to heaven, tell them this: I just came from there." 6
Mrs. G., a 60 year old woman with metastatic lung carcinoma had been a wife and mother throughout her adult life. She grew increasingly despondent as her illness progressed and her functional status declined. Her physical pain could be controlled with narcotics and anti-inflammatory medications, but she had lost the ability to do any of the things that had brought her life meaning. Instead she was becoming dependent upon others, the very people she still felt a need to nurture and protect. She was painfully aware of the burden that her care represented to her family. She felt worthless and hopeless. Her suffering manifested as agitation, at times with confusion and paranoid delusions. Medications would calm her outbursts, but her suffering persisted. Additionally, her family suffered to see her in such distress and wished that her life would end quickly and with comfort.
Intervention involved listening attentively to the patient's story of her life and focused on exploring the patient's feelings of unworthiness and her fears of what she had left undone. She was able to speak openly about her impending demise and voiced concern about her children who continued to struggle in their adult lives. Her feelings of inadequacy were gently challenged by reflecting on the content of her life story and on how much she had accomplished and done for others in her life. It was suggested that the work she had remaining to do was about completing her full and meaningful life. In counseling, each of her close relationships were reviewed with attention to "what would be left undone" if she were to die before important things were said. The patient was able to meet with each of her children. These poignant visits included mutual expressions of forgiveness, of appreciation and of love. In a real sense the patient was completing her relationships and saying goodbye.
Furthermore, in counseling, Mrs. G. was asked to consider that an important task for this stage of life for any person might include the acceptance of care from others. Specifically, it was suggested that her willingness to receive care was the single most important thing she now could do for her family. During a subsequent meeting with Mrs. G. and her children in which this notion was shared, her children's response was tearful, but enthusiastic agreement. One of them said, "We need to care for you Mom. Please let us do this for you as you have raised us and done so much for us in our lives." Collectively, they expressed a need to provide care as a means of completing their relationship and grieving the loss of their beloved mother.
In addition to patient and family counseling, ongoing adjustments were made in Mrs. G.'s medications and meticulous attention to medical aspects of care continued by the hospice interdisciplinary team. Over a period of two weeks, Mrs. G.'s suffering improved. Her paranoia dramatically diminished, occasional night time confusion responded to calm reassurance and she was able to accept care from her family with grace and even a sense of humor. She died in her home, surrounded by family in comfort and peace.
As is evident from the examples chosen, even at the end of life the range of human experience remains vast, extending from intense suffering at one extreme, to a sense of comfort and genuine peace to, at the other extreme, a sense of profound wellness.
Often the term "good death" is used to describe the goal of terminal care. It has the disadvantage of connoting something that is static and formulaic. Furthermore, it perpetuates the confusion between death -- about which we arguably know nothing -- and dying, the personal process of living with progressive decline and impending demise. The phrase "dying well" seems better suited to describe the positive end-of-life experience that people desire. In conceptualizing "dying well" and the related notion of "wellness in dying" it is not necessary -- and would be misleading -- to glorify the experience. Dying, even for those who attain a sense of wellness, is rarely easy and may, instead, be arduous and unpleasant.
Hospice practice experience provides strong empirical validation for the historical and literary observations that suffering among the sick and the dying -- suffering which to the healthy reader or observer may seem inevitable and unendurable -- can, at times, give way to a heightened sense of well-being and quality of life. This aspect of the human experience of dying has, as yet, not been incorporated within the medical model. It is both wonderfully provocative as well as intellectually unsettling to confront the implications of this observation. How can this apparent paradox be explained?
A Developmental Model
In approaching this paradox it is necessary to restate the most fundamental tenet of the hospice or palliative approach to care: Dying is a part of living. The period of time referred to as dying can, therefore, be considered as a stage in the life of the individual person and the family. Modern psychological theorists, among them Erik Erickson, Jean Piaget and Abraham Maslow, whose work collectively forms the basis of modern
behavioral medicine, all asserted that human development is a life-long process.
There is a tendency within contemporary culture and reflected in medical practice to assume that on receipt of a terminal diagnosis meaningful life has ended. Within this perspective the person is constrained to wait for death, being reduced to hope only for some measure of comfort and to avoid being a burden to others. This attitude is incongruous with the basic philosophy of modern palliative care for it inappropriately devalues and separates this last stage of living from the continuum of a person's life.
It is useful to conceptualize dying as a stage of the human life-cycle, comparable to infancy, childhood, adolescent, adulthood and advanced age. While individuality, of course, extends through the very end of life, characteristic challenges, or developmental landmarks, can be discerned and representative task work toward achievement of these goals can be identified. [Table 1] The specific landmarks and task work delineated will vary from one author or clinician to another. The specifics are far less important than the conceptual framework of life-long human development.
It is important that a developmental approach to dying not be misconstrued as introducing a set of requirements against which to judge the personhood of an individual. These broad landmarks are intended to serve as diagnostic tools enabling clinicians to anticipate issues with which patients may struggle and from which suffering may arise. This framework provides a means of recognizing opportunity which may otherwise remain overshadowed by the person's distress. The word opportunity is carefully chosen to describe in general terms the status of dying patients who have an acceptable level of physical comfort. The dictionary defines opportunity as "a combination of circumstances favorable for the purpose". 19
The task work offered in Table 1 represent various means through which persons in their dying may develop a sense of completion, satisfaction and even a sense of mastery within areas of life that are of subjective importance to the person. The examples listed are intended illustrate the conceptual framework and are not meant to be exhaustive. The task work involved in the process of dying is the person's own to do -- or not do -- as they so choose. As clinicians, we can explain opportunities, offer suggestions and, if there is interest expressed, we can facilitate the person in his or her own work. In this manner people can be gently assisted in achieving a sense of readiness as they approach death.
Cassell's multidimensional construct of personhood and the model of life-long human development provide a means for understanding the human experience of dying. Together they suggest a language for its expression. The key to solving the apparent riddle of how suffering can give way to a heightened sense of well-being lies in the realization that during each phase of life the personhood of the individual changes. In fact, throughout a person's life the sense of who one is changes most dramatically in the process of responding to the challenges and crises that virtually define the developmental stages of infancy, childhood, adolescence, mid-life and late-life.
During each major life transition there may be suffering. At times people may be broken and never fully recover an integrated sense of self, but most find a way to grow through these turning points, achieving a measure mastery as they look ahead. One need not undergo a "peak experience" or achieve ultimate "self-actualization" to experience growth in the last stage of their life. People who can be said to have grown in their dying are those who express satisfaction in the direction of personal change that occurred in response to progressive stresses of disabling illness and for whom an enhanced subjective sense of self emerges during the process.
Dying is surely the most profound of life's challenges. We speak of growing up and growing old; perhaps, we can refer to those who emerge from suffering into a subjective sense of wellness in their dying as "growing on."
Abrupt disability can result in the patient feeling as if critical dimensions of self had been amputated. When the clinical course provides sufficient time and when aid is available through support of caregivers, social roles and responsibilities can be completed and dimensions of self to be consciously released from the person. Business can be completed, legal and fiscal responsibility transferred, the value of others can be acknowledged and appreciation mutually expressed. Even intimate relationships gradually can be brought to a sense of completion. Families can be helped to effectively resolve problems of communication such as the "conspiracy of silence" in which neither patient nor family will openly acknowledge the terminal nature of the illness in order to protect one another from the pain of separation. In actuality, the shared pretense only adds isolation to the grief each person is feeling. One example of a "clinical tool" for assisting in the completion of relationships is the "saying of the five things". Years ago a nurse colleague taught me that in order for people to feel complete in any close, personal relationship they need to have conveyed and acknowledged five things: "Forgive me." "I forgive you." "Thank you." "I love you." and "Good-bye."
In contrast to a sudden, "easy" death, progressive illness, offers a precious opportunity to reconcile previously strained relationships -- perhaps between previous spouses, or between a parent and estranged child. The history of a relationship (and family) is transformed when the story of two persons ends well. Completion does not require an ending of interaction or a severing of relationship. Rather, it conveys a sense that there is nothing left unsaid or undone. When a dying person and loved one come to feel complete between themselves, subsequent time together is as often marked by joy and the exchange of loving affection as it is by sadness.
Inwardly, as well, the process of dying in a progressive, rather than sudden fashion, provides an opportunity to acknowledge achievements and savor a sense of accomplishment and satisfaction. It is a rare individual who achieves all that he or she had hoped for in life, and this waning phase of life also offers the opportunity to come to terms with life's frustrations and disappointments and to accept one's own imperfections. A clinician who enjoys a good rapport with a patient can point out that the person is "only human" and that humans, by their very nature, tend to be imperfect. In this and similar fashion a patient who is suffering from low self-esteem can develop -- perhaps for the first time in life -- a feeling of self-worth.
While a person's past is
protected from the ravages of illness, through life review a broader perspective can be achieved. Previous mistakes and misdeeds can be understood as part of a larger whole, self forgiveness can be extended. Here, as with the history of strained relationships, a life story that ends well casts a positive light on all that has preceded. In this manner a person may come to feel "enlarged", even as he or she is so physically diminished.
Geriatricians Lewis and Butler have emphasized this point: "The therapeutic possibilities of the life review are complex. There is the opportunity to reexamine the whole of one's life and to make sense of it, both on its own terms and in comparison with the lives of others. Identity may be reexamined and restructured. There is the chance to resolve old problems, to make amends and restore harmony with friends and relatives." 11
The process of storytelling as a particular form of life review often has valuable salutary effects and should be encouraged. Stories from the person's past can be elicited by an interviewer with even modest experience (such as a trained volunteer) and can be aided by leafing through a family photo album. Patients who have interest in having their stories recorded in their own voice can be assured that others, especially their children, grandchildren and, quite possibly, those yet unborn will regard the recordings as heirlooms to be treasured. In this manner persons who can no longer contribute in accustomed ways to their families, and who may feel a burden to others, can regain a sense of tangible meaning in the effort to preserve and transmit their stories.
Meaning and the Transcendent
The transcendent dimension commonly assumes greater
subjective importance as one nears the end of life, perhaps because the person's perspective becomes unobstructed by the priorities and demands of an active life. The related dimension of meaning which is so pervasive and central to the nature of suffering is also pivotal to the resolution of suffering and the subjective experience of personal growth. Each religious and philosophical tradition provides a method for infusing the suffering of a person with meaning. The person may come to experience suffering as a sacrifice for sake of others or as a means by which they are connected to the transcendent realm. Hospice experience confirms that suffering often becomes endurable -- or miraculously dissolves -- when it becomes meaningful for the person. The personal meaning of suffering may seem to others to be abstract but for the person dying meaning is a tangible entity, deriving substance and shape from the individual's life history. The profound, therapeutic power of meaning for human beings is at the crux of Victor Frankl's logotherapy. This school of psychotherapy which he founded focuses on helping the person find a sense of meaning in his or her life experience, including the most adverse of experiences.
The personhood of the dying individual can be conceptualized as gradually becoming less dense as some spheres of self fall away and others are consciously released. Those dimensions of self which only require the person to "be" -- such as one's past, one's sense of meaning and the transcendent realm -- gradually assume prominence. The person's experience of self identity often becomes fluid at the end of life. The person's sense of self tends to become less complex, however, personhood may remain subjectively intact.
well, therefore, can be understood in terms of the subjective experience of personal growth, embodying a sense of renewed (at times enhanced) meaning and a sense of completion, at times even fulfillment in life. Personal growth is rarely easy at any stage of life, and a growthful dying may actually be difficult. It probably must entail a measure of suffering. The touchstone of dying well -- the sense of growing in the midst of dying -- is for the experience to be important, valuable and meaningful for the person and their family.
Care for persons who are dying is at once complex and simple. The details of managing atypical pain, intermittent bowel obstruction, fistulas or pruritis all may be intricate, yet the general orientation toward care for the dying patient remains straightforward. Comprehensive care for people who are dying rarely requires more than careful management of symptoms and attention to the basic psychosocial needs of the individual -- as a person -- and their family. Beyond symptom management, hospice and palliative care intervention can be directed at helping the person to attain a sense of completion within the social and interpersonal dimensions, to develop or deepen a sense of worthiness and to find their own unique sense of meaning of life.
Most fundamentally, clinicians can serve the dying person by being present. We may not have answers for the existential questions of life and death any more than the person dying. We may not be able to assuage all feelings of regret or fears of the unknown. But it is not our solutions that matter. The role of the clinical team is to stand by the patient, steadfastly providing meticulous physical care and psychosocial support, while people strive to discover their own answers.
The poet Rilke wrote:
|"...have patience with everything unresolved in your heart and try to love the questions themselves... Don't search for the answers, which could not be given to you now... And the point is, to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer." 14|
Encountering a patient who is suffering in the midst of terminal illness is an all-too-common occurrence for clinicians who care for the elderly. This chapter explores the personal experience of suffering in the context of life-limiting illness. The concept of personhood is utilized to illuminate the nature of suffering. Clinical observation documents that some persons experience a subjectively heightened sense of well-being as they die. The concept of personhood and the model of life-long human development is applied to the explication of this apparent paradox, enabling an understanding of the nature of opportunity at the end of life.
The Nature of Suffering and the Nature of Opportunity at the End of Life
Clinics in Geriatric Medicine, Vol. 12, No. 2, pp. 237-252, May 1996
Ira R. Byock, M.D.
Hospice Medical Director, Partners In Home Care, Missoula MT
Chair, Academy of Hospice Physicians Ethics Committee
BYOCK'S LANDMARKS and DEVELOPMENTAL TASKWORK
A working set of ...
Developmental Landmarks and Taskwork for the End of Life
presented in a practical framework with introduction by Dr. Byock
Return to the Top
Return to Articles Main Page