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Journal of Clinical Oncology, Vol 26, No 9 (March 20), 2008: pp. 1560-1561 © 2008 American Society of Clinical Oncology. DOI: 10.1200/JCO.2007.12.6664
Isnt There Someone to Blame?
From the Maimonides Medical Center, Brooklyn, NY Corresponding author: Alan B. Astrow, MD, Division of Hematology/Medical Oncology, Maimonides Cancer Center, 6300 8th Ave, Brooklyn, NY 11220; e-mail: aastrow{at}maimonidesmed.org What practicing oncologist has not found him or herself unfairly "attacked" by a patient or the patients family? How ought one reply when the normal human response is to defend oneself? What kinds of emotions fuel harsh criticism of the physician who is caring for a critically ill patient? If our professional goal is reasoned decision-making and compassionate care, what kinds of insights can we fall back on when confronted with an accusatory outburst? I recently experienced a troubling encounter with the husband of a patient, a 49-year-old woman with metastatic gastrointestinal cancer, which raised many of these questions for me. The patient was first diagnosed 1 year earlier and had multinode-positive disease, for which she was treated with surgery followed by radiation and chemotherapy. Unfortunately, she suffered a recurrence with bulky intra-abdominal metastases. She was treated with combination chemotherapy, but nevertheless required paracenteses every other week for symptom relief. She suffered from fatigue, nausea, depression, and anxiety. My discussion with the patient and her husband that morning was time-consuming and emotionally draining. How long did she have to live? Her husband would have preferred that I not respond, but after the usual disclaimers about my inability to predict outcomes with certainty, I explained that it was very unlikely that she would be with us 1 year from then, and unless she had a dramatic response to chemotherapy, it was possible that she would live only 6 months or even considerably less. At that point, the patients husband asked, "How could this be? When she was originally treated, maybe something was missed?" I confess to feelings of exasperation at the husbands question, and I was tempted to defend myself. But, in more than 20 years of practice, Ive learned that defensive responses are seen, at best, as excuse-making and, at worst, as aloof and arrogant. On the other hand, there is the issue of self-respect. I felt as if the husband were questioning my competence as a physician. I had to say something. I had attended an American Society of Clinical Oncology doctor-patient communication workshop a few years before and I called to mind a few of the lessons. Avoid premature reassurance. Get out of the fixing mode. Try to identify the source of the feeling that is stimulating the accusation. Seek to understand, then to be understood. Empathize. "Clearly you are upset at the news I have just given you," I tried. "It is hard to understand why a young woman should develop such an illness and why the treatments have done so little good." Then, "perhaps you are feeling even now that potentially useful approaches are being overlooked. I am sure that everything that can be done is being done, but I will discuss your wifes case again with an expert from another institution to see if there are any other potentially useful treatments or a clinical trial that she might be eligible for." How successful this was, Im not certain. It did allow me to maintain my relationship with the patient and her husband. But the encounter left me feeling uneasy. Its understandable that patients and their family members would experience rage in the face of an untimely death, and that the medical oncologist, as the available physician representative, would be the recipient of that rage. But what I wish to draw attention to is not just the husbands anger and grief. The husband was suggesting that his wife had not been treated correctly: "maybe something was missed." The seeming implication was that I had overlooked a diagnostic test or treatment possibility early in his wifes course, and that this omission was the cause of her impending death. A physician might sympathize with the husband, who was likely struggling with his own fears and guilty feelings, or sympathize with the husbands frustration with the limited therapeutic options and his distress at the prospect of losing his wife, and yet still find the conversation trying. I suspect that most practicing oncologists can recall incidents where despite devoted service to a critically ill patient, we find ourselves accused directly or by implication of being the cause of a patients suffering. We can feel hurt and unsettled by the experience, and angry in return. In any one case, one might argue that there is a legitimate reason for a familys attempt to fix blame. We do make mistakes, overlook treatment possibilities, speak insensitively, and so on. Critical reflection on our part promotes high standards and improved patient care—this is one of the purposes for the Accreditation Council for Graduate Medical Educations emphasis on core competencies and practice-based learning. And there may be larger social issues at play—news media coverage of cancer treatment breakthroughs, competitive institutional advertising, cultural misunderstandings between oncologist and family, a generalized atmosphere of litigiousness, perverse financial incentives—all of which may serve to promote suspicion of the oncologists actions and motives. But the need to deflect blame is a consistent dimension to the oncologists work experience. Blame emanates from so many directions when a patients condition deteriorates, that is fair to ask whether understandings below the level of the conscious awareness of the patient, family, or physician stimulate the feeling that someone must be at fault. How often do we oncologists blame ourselves for poor outcomes that are clearly outside our control, even believing that we have caused the patients death? Such feelings do not always abate with experience. At least one colleague, a revered clinician, confessed to me that dealing with dying patients has become more difficult for him with each passing year. Is it possible that the very nature of death and dying generates an unconscious sense of wrongdoing regardless of circumstance? In that case, our best hope for dealing with painful feelings of blame might be simply to recognize their presence, give them a name, and discuss them openly. Let me illustrate this concept by citing the contrasting views of two leading contemporary philosophers: Daniel Callahan from the Hastings Center, and Robert Burt of the Yale Law School. For Callahan, the best, perhaps healthiest, way to temper unjustified feelings of blame is to develop a mature sense that death is a natural part of life, expected, at times even welcome. "Death does not seem to me to be an evil if it comes at the end of a long life, one marked by a completion, or near it, of those aims that mark a full life," he writes. "Almost all of us know old people who, while still enjoying life, profess themselves ready to die and seem to mean it."1 What Callahan proposes is the development of a spiritual discipline that leads to acceptance. The limitation of this end-of-life account is that it does not fully address the oncologists experience in caring for critically ill patients. Oncologists witness powerful emotions stirred up in others and in ourselves when life-and-death matters are at stake. At any age, one may see ones life as unfinished. The news that a cancer is incurable is a painful blow and may feel deeply unfair. Medical oncologists—frequent witnesses to profound grief and reminders of the inadequacies of their treatment tools—may come to question their own worth. Or they may engage in distancing behaviors so as to ward off feelings of failure. It is not so easy to "learn to let go." Professor Robert Burt of the Yale Law School has offered an alternative view to Callahans. According to Burt, death in Western Culture, whenever it comes, is inextricably linked to "wrongness." It all goes back, he argues, to Adam and Eve and the snake, an account whose fabulistic nature should not obscure for us its insights into the nature of human relationships and desires. Death in this narrative results from error. Burt writes, "If death is a moral wrong and you cannot avoid dying, then it follows that somebody must be punished for wrongdoing."2 The solution to the problem of blaming (if one exists), according to Burt, is to acknowledge our ambivalent feelings towards death and the dying and to establish practices and places where that ambivalence can be expressed. The alternative strategy, that we redouble our efforts to insist that people view death as good and natural, cannot succeed because for most people, it is not possible to avoid feeling a sense of moral wrongness about death.3 Which account is more convincing, death as a natural and expected part of life, or death inevitably experienced as wrong? Are the angry, accusatory outbursts that oncologists sometimes experience simply aberrations, remnants of an outlook that improved medical treatment and public education may eventually dispel? Or are they intimations of a timeless dimension to patient care, present in more subtle forms whenever a patients life is at stake? Clearly there is a spectrum: both accounts may explain feelings which coexist within us in an uneasy balance. It is important for an oncologist to define his or her own beliefs and to recognize differing perspectives. Many patients seem to accept gracefully the prospect of their own demise. Still, it is possible that others in their own circle of family or friends cannot reach the same state of equanimity. Losing a loved one hurts whenever it happens. Consider a final case: a 75-year-old man has advanced metastatic lung cancer. He has undergone radical surgery, radiation therapy, and two four-month courses of chemotherapy, but has progressive disease in bone and lung with pain and shortness of breath. He and his wife come to me for a discussion of treatment options. These consist of third-line chemotherapy, additional palliative external beam radiation therapy, referral for a clinical trial, or hospice. I know he is likely to die soon, irrespective of the treatment. If Callahan is correct, a physician ought to be able to reason toward the best approach for the patient, given the available evidence and the patients wishes, then move on to the next patient with a clean conscience. But if Burt is right, these kinds of conversations, which in this case included the patients wifes innocent speculation that perhaps the cancer "had not been attacked aggressively" early on, will often be clouded by troubling emotions. The danger here is that the unacknowledged sense of the wrongfulness of death will surface as aberrant action. In a case such as that of my patient with far-advanced lung cancer, the hidden fear of blame for the patients death might lead to an offer of (or a demand for) unnecessary treatment. The same unexplored sense that death implies wrongdoing (and that blame for that wrongdoing must be steered clear of) might in less dire circumstances lead an oncologists to hesitate to suggest risky but potentially helpful treatment. The realm of conversation and decision-making as death looms requires an added level of awareness of the competing moral narratives at play. Callahan teaches us that death is a part of life. Burt adds that death is also a haunting event. Facing up to the mystery at the heart of the matter may allow us to act more compassionately toward others and toward ourselves. AUTHORS DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST The author(s) indicated no potential conflicts of interest. NOTES Authors disclosures of potential conflicts of interest and author contributions are found at the end of this article. REFERENCES 1. Callahan D: Death: "The distinguished thing." Improving end of life care: Why has it been so difficult? Hastings Center Report Special Report 35:S5–S8, 2005 2. Burt RA: Death Is That Man Taking Names: Intersections of American Medicine, Law, and Culture. Berkeley, CA: University of California Press, 2003, p. 13 3. Burt RA: "The End of Autonomy." Improving end of life care: Why has it been so difficult? Hastings Center Report Special Report 35:S9–S13, 2005 Submitted May 17, 2007; accepted September 10, 2007.
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Copyright © 2008 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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