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© 2001 American Society for Clinical Oncology
The Narrow PathFrom the Mayo Clinic, Rochester, MN; and the Center for Palliative Studies, San Diego Hospice, San Diego, CA. Address reprint requests to David P. Steensma, MD, Mayo Clinic, 200 First St SW, Rochester, MN 55905; e-mail: steensma.david@ mayo.edu. THEATER AUDIENCES know how to react to horror scenes. But when physicians find themselves in the middle of dreadful incidents in the clinic and the hospital, the appropriate response is less clear. Recently I stepped into such a scene, and I nearly overplayed my part. Late on a summer Saturday, a young woman from a distant farming town went to her local emergency room with a persistent nosebleed. Fifteen weeks pregnant at the time, she was worried that the heavy bleeding might make her anemic. By the time she reached the hospital, the nosebleed had stopped, and fetal heart tones were reassuringly normal. But a sharp-eyed physician noticed petechiae on the young woman’s legs and ordered a blood count. The results were devastating: her blood was packed with leukemic cells, and her platelet count and hemoglobin were profoundly low. She was rushed to the academic medical center where I was serving as the fellow on the leukemia ward. She arrived before dawn on Sunday morning. By then the nosebleed had returned in earnest, and her gums and her intravenous line were oozing. A blood smear showed more than 100,000 promyelocytes, and further tests revealed a florid consumptive coagulopathy. An urgent bone marrow aspirate confirmed the diagnosis of acute promyelocytic leukemia. Lost in the frenzy of venous access, leukopheresis, and clotting factor replacement was the fact that her baby had died somewhere between the local emergency room and the leukemia ward. I greeted the news with a paternalistic sense of relief; at least she wouldn’t have to face any agonizing decisions about whether to delay or modify chemotherapy or terminate the pregnancy. Her profound grief on learning of the loss of the baby quickly erased those selfish thoughts. By Monday the young woman had become short of breath, and a chest x-ray showed new bilateral lung infiltrates. Whether the dead fetus was somehow to blame was uncertain, but all involved in her care felt it was prudent to remove it. The obstetricians were willing to attempt a dilation and curettage as soon as our team could get her coagulopathy under reasonable control, but this had proven difficult. At 8 o’clock, our morning rounds on the leukemia ward began. A few minutes later my pager summoned me, and I moved down the hallway to find an open telephone. The nearest one was right outside the young woman’s door. As I picked up the receiver, a frantic-looking nurse burst out of the room: "Doctor Steensma, come in here quick! I think this woman is delivering her baby!" The next few minutes are a blur. I remember anticipating a mess and grabbing a gown from a cart sitting outside the next room. While the nurse paged the obstetricians, I ran into the room to find the fetus already partly protruding from the woman’s body. The rest of it slowly emerged, much larger than I had anticipated—a gangly, purple-splotched, sorry-looking figure. In contrast to the body of the fetus, the silent and motionless face was perfectly formed and free of bruises. The arrival was accompanied by a gush of blood, and I was glad I had donned the gown. Instinctively, I grabbed a clamp from a nearby intravenous line and put it on the umbilical cord, immediately realizing what a ludicrous action that was. My attention turned back to the mother. She stared blankly out the window, her face completely expressionless. Her oxygen mask hissed and a morning talk show chattered softly. Yet the silence in the room was oppressive, and I could find no appropriate words to interrupt it. I have given patients bad news countless times, and have delivered several stillborn babies, but what could I say to this woman whose lifeless baby I held in my hands—a woman who simultaneously faced the death of her dreams for that baby and a new diagnosis of leukemia? I managed to mutter a soft "I’m so sorry," reassured myself that she wasn’t having any physical pain, then set to work burying my own emotions to be exhumed and confronted at a more convenient time. The nurse who had sounded the alarm returned and thought of something else to say—she asked if the young woman wanted the baby baptized. Miraculously, there was little further bleeding, but it still seemed like an eternity before an obstetrician arrived to rescue me. After a quizzical look at my makeshift umbilical clamp, the obstetrician set the fetus in a blue plastic bucket and set to work removing the placenta. "We’ll send the fetus for genetic testing," the obstetrician stated to me matter-of-factly. I couldn’t imagine why—wasn’t it obvious why the baby had miscarried? My unspoken question was soon answered. "With all the bruising, I can’t tell what sex it is, and the family will want to know." My presence no longer needed, I made my escape from the room, reeling from what I had just witnessed and uncertain of what to do next. Should I walk out of the hospital altogether, daring to come back only after a period of angst-filled reflection? It seemed like a reasonable thing to do at the time, but it would be difficult to explain my absence to my colleagues. Should I go to the bathroom and vomit, as a friend once told me she always does after witnessing a catastrophe? It didn’t seem my style. In college I used to amble off campus with a briarwood pipe whenever I felt in danger of coming emotionally unglued, but since going to medical school that seemed hypocritical. For want of a better alternative, I rejoined rounds. The attending physician looked up from a chart. "Where were you?" "The new patient with AML-M3 just passed her baby, and I wanted to make sure everything was OK." His eyebrows raised. "Is she OK?" "For now, I think so." "Are you OK?" I paused. "Yeah, sure." Nothing else was said about the incident, and rounds resumed. By the time we reached the young woman’s room, her dyspnea had worsened, and she was coughing up blood. By the end of the day she was in the intensive care unit, intubated, with extensive bilateral pulmonary hemorrhage. I wasn’t OK either. Long after nightfall, with my work in the hospital finally done, I returned home and went straight to my favorite refuge for contemplation—the rocking chair in the corner of my baby daughter’s nursery. As I sat in the dark listening to her soft breathing, I wondered how I had been thrust into the middle of such a horrific incident, and why I felt like the patient’s wounds were somehow also my own. How should a physician—or anyone else, for that matter—react when slapped in the face with someone else’s tragedy? No formal coursework had prepared me to answer this question, even in the abstract. My initial instincts—to flee, or to respond viscerally—would have been overwrought, and for the sake of decorum I was forced to simply postpone a reaction. But I could not delay reflection forever; the cost of making myself safely numb to the pain of my patients would be to make myself cold, impersonal, and useless as a comforter and paraclete. Why had the young woman’s tragedy somehow injured me as well? John Donne reminded us that "no man is an island," that each person’s tragedy diminishes us all because we are all "involved in mankind."1 I confess that I have felt this sense chiefly when I have identified closely with a patient for some reason or another—someone with a background or profession similar to my own, or characteristics that remind me of someone I know. But the lack of this sense in any given instance is simply a failure of my imagination; despite the wonderful and frightening variety among members of the human race, we are more alike than we are different. The time will come when the tragedy genuinely will be my own. I have known pain—although, thus far, my wounds pale in comparison to those of the young woman described above—and I will know loss again. In light of this truth, the words of one of my favorite poems, "Otherwise," are a reminder not to forget what I have now:
I got out of bed on two strong legs. Not long after writing these words, the poet, Jane Kenyon, developed acute leukemia and died. For Kenyon, "Otherwise" came very quickly—much too quickly for those who cared about her. And someday "Otherwise" will come for me, too; no matter when it comes, it will be too soon for my liking. In the meantime, I must not lose sight of what I have. After the incident with the miscarriage, I spent a lot of time wondering how I had become a player in the scene in the first place—why did I choose oncology? I have found it helpful to periodically remind myself of why I chose this profession in order to summon the energy to move forward, pull myself away from too much melancholy reflection, and avoid a dangerous tendency to feel sorry for myself. The intellectual reasons for the choice always flow the easiest, a product of distant hours of fellowship interview preparation: the biology of cancer is fascinating; new therapies are needed, and perhaps I will contribute to developing one. Some of my most inspiring mentors were (and are) hematologists and oncologists, and role models are critical in choosing a profession and a cause to which to devote one’s life. There is also the voice of compassion: patients with cancer are an exceptionally needy group. Physicians can’t limit their practices to well-baby checks; somebody needs to take care of the really sick people. Just because I might choose to flee the front lines of the struggle doesn’t mean the problem of cancer—or, more broadly, illness, suffering, and death—will somehow go away. And so I go back to work. During my final year of college, I hiked in the Great Smoky Mountains with the woman who is now my wife. The Appalachian Trail near Tennessee’s Mount LeConte winds along a narrow, exposed ridge that forms the backbone of that ancient mountain range. On the day we walked along that footpath, a harsh winter storm blew in from the northwest. The ridge top was rugged and only a few feet wide; rare breaks in the clouds showed the tops of trees far below us on either side. As we struggled to keep from slipping into the abyss, we could not see each other because of the thick shroud of fog and driving snow, and could not hear each other over the clamor of the wind. The sensation was one of utter solitude, floating a mile up in the unfriendly air, tenuously anchored to our mother earth. We missed the cutoff to the mountain summit, and finally stumbled into an open-faced shelter long after dark, forced to make camp in a foot of fresh snow with the fierce storm still raging around us. I sometimes feel similar sensations as I go about my work as a physician. Every day I try to steer the narrow, twisting road between the two dangers that face all doctors who work with very ill patients—the Scylla and Charybdis of cancer medicine. If I get too close to my patients and allow myself to become emotionally entangled in their suffering, every death feels like the loss of a family member. I risk becoming paralyzed in grief. But if I don’t allow my patients’ agony to hurt me at all—if I attempt to preserve myself by making myself untouchable, emotional Gore-Tex—then, like old Tithonus, who was granted immortality but not eternal youth, I am condemned to shrivel up into a grasshopper, abandoned by the voice needed to give comfort to my patients. The challenge of this style of medicine is loneliness. Although I know that there are many others pushing their way through the same severe storm, I can’t always hear them. Even my wife, my closest companion, cannot always understand the demons I wrestle. My colleagues, who face the same problems that I do, rarely discuss them. This is understandable. Although we may occasionally share the safety valve of gallows humor, muddling around in the darkness is risky; we might bump into something sharp and reopen an old wound. The warning against such journeys into the unknown is clearly posted—here be dragons. These dragons are real. Cancer can be demonic. It is not possible to spend a life so near the long arms of the crab and not be pinched or mutilated. Soften up a seasoned oncologist with some liquor, and you might not want to repeat what you hear.3 Hollywood’s classic version of a good death is the elderly matriarch shrouded in silk who spends her last hours dispensing profound words of eternal significance, then goes softly into the night with her tearful family gathered around—but this is often far from reality. Many of the patients I see go kicking and screaming, unwilling to get off the merry-go-round when the ride is over, dying an agonizing, horrific death. For others, their agony is primarily existential (but no less acute for that), as they finally realize the harvest of an ill-spent life. Because I work at the Midwest’s version of Lourdes—the Mayo Clinic—I meet more patients with unrealistic expectations than is typical, but all oncologists see them now and then. Ten thousand lesser tragedies, each catastrophic to the victim and her circle, comprise the oncologist’s career. Sometimes cancer even seems cruelly directed, specifically at those with a particular talent or gift—punishment for Icarus flying too close to the sun, the hubris of Babel hurled down and dashed into a maelstrom of unintelligibility. The promising southpaw who develops an osteosarcoma in his throwing arm; the popular baritone silenced by a laryngeal carcinoma; the painter with a metastasis to the visual cortex; the physician, known throughout the institution for his prodigious memory, whose abilities, career, and life are erased by a glioblastoma—cases like these may be simply stochastic, but seem like a diabolical joke. Metaphysics is not my forte. I do not, and cannot, understand why such things happen. Kurt Gödel, Werner Heisenberg, and the Book of Job, looking at the problem from different angles, all tell me that I am not allowed to know; I can’t get outside the system and peer in. There are no crib notes for life. Some things are simply beyond human knowing. Everyone has a different way of dealing with these challenges and keeping the soul from shattering. Some of these are healthy, others clearly pathologic, but I don’t presume to tell others how to keep their boat from running aground. My own consolations are plentiful, but fragile. I smile as I watch my daughter rejoice in her nightly bubble bath; there’s no place she’d rather be. I share long conversations with my wife, whose intimate companionship is immensely satisfying; I cannot remember the time before it, and hope I never have to endure a time without it. My work is consuming, varied, and pleasurable—days away from the clinic and the lab are refreshing and necessary, but I can’t wait to get back. I pray to a God I cannot begin to understand, whose voice I cannot always hear, but whom I believe is crying along with me in the midst of all this suffering. And on cloudless nights when I feel too consumed by my own concerns, I drive far from the city lights and lay flat on my back on the hard ground, reminded by the infinite display of the pettiness of my own churning. I never leave disappointed. REFERENCES 1. The EPEC Project: Education for Physicians in End-of-Life Care. Http://www.epec.net. 2. Whippen DA, Canellos GP: Burnout syndrome in the practice of oncology: Results of a random survey of 1,000 oncologists. J Clin Oncol 9: 1916-1920, 1991[Abstract] 3. Ramirez AJ, Graham J, Richards MA, et al: Burnout and psychiatric disorder among cancer clinicians. Br J Cancer 71: 1263-1269, 1995[Medline]
EDITORIAL COMMENTARY For me, that moment of discomfort was followed first by recognition, then by a more lasting sadness. I recognize both the feeling of being mute in the face of tragedy and also the "hidden curriculum" in medicine to "be tough and suck it up." The consequences are there for all to see. I am sad when I hear patients and our professional colleagues outside of oncology variably disparage oncologists as cold, impersonal, unfeeling, and cruel. Dr Steensma’s story gives me insight into how this might happen. The overwhelmingly common reason to go into medicine in general, and oncology, in particular, is to be helpful—to make bad things better. Gradually, during the long training process, cynicism and cold detachment may be learned. We may learn that from seeing those around us, and above us, handle difficult situations. We may develop patterns that will protect us from being hurt again. Why don’t we make the nurturing of coping skills in ourselves and our colleagues a priority? Why aren’t we broadly admired for how well we care for those who will ultimately die? Dr Steensma has found some coping strategies for himself. Part of his coping is clearly in writing about his experience. When 265 physicians were first trained to use the Education for Physicians in End-of-Life Care (EPEC) Curriculum,1 the participants chastised us for omitting a discussion of professional self-care from the original draft of the curriculum. To rectify this, an additional session was added regarding how to care for oneself in the face of multiple losses. This EPEC module (the EPEC curriculum is available at http://www.epec.net) is based on the collective wisdom of many individual physicians provided in context with literature on stress, burnout, and professional self-care. Oncologists should be knowledgeable regarding this subject.2,3 Charles Von Gunten MD, PhD
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Copyright © 2001 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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