Slowly, I am learning to cope and grieve—not despite, but rather in honor of, all of the pieces that embody our humanity.
—Erica C. Kaye, MD
The ASCO Post is pleased to reproduce installments of the “Art of Oncology” as published previously in the Journal of Clinical Oncology (JCO). These articles focus on the experience of suffering from cancer or of caring for people diagnosed with cancer, and they include narratives, topical essays, historical vignettes, poems, and photographic essays.
To read more, visit http://jco.ascopubs.org/ and search “Art of Oncology.”
I struggle to remember Taylor’s face as he died. I piece together kaleidoscope fragments, but they blur in and out of focus: his sunken eyes, the sharp angle of his jaw, his cold fingers, the sucking spaces between his ribs.
I’ve grown used to how the broken shards of people become embedded in my subconscious. I am careful—paranoid, even—about handling each memory fragment gingerly, lest it slice into a place within myself where it might linger like a splinter.
Starting to Unravel
The end of Taylor’s life intersected with the end of my first year of pediatric hematology-oncology fellowship. Taylor was 15 years old, he had lymphoma, and he was dying. Many of my patients could be reduced to similar sound bites: age, disease, and acuity captured in quick one-liners. Initially, I rebelled against these synopses, injecting flowery language into my verbal and written reports in an effort to capture the spirit of my patients beyond their illnesses. I grew particularly fond of using adjectives like “feisty” or “precocious” to describe my patients, and I gladly accepted the inevitable teasing of my colleagues in return.
Yet as I cared for increasing numbers of patients, I found it difficult to genuinely know children and families in a meaningful way that transcended their diseases and treatments. In the late evenings, I would try to circle back to the bedside in search of a few nonmedical moments. I remember these visits vividly: We sang, played board games, talked about life beyond the hospital. Often, I did not begin writing notes until after midnight. It did not take long before this pattern became unsustainable, and I started to unravel.
Exhausted and anxious to prove my competence, I learned to prioritize proficiency and productivity. There were too many patients and too few hours in the day, with each shift morphing into a zero-sum game governed by meticulous triage calculations. To maximize efficiency, I mastered the art of collapsing patients into their disparate parts: vital signs, pain scores, input/output, laboratory values, medication doses, imaging studies. Over time, I started to believe that the key to healing my patients lay in these details, if only I were smarter or faster in gathering and deciphering the essential pieces.
In the midst of this incessant data collection, I also was a front-seat witness to horror and heartbreak on a daily basis. Each layer of tragedy felt more raw and unbearable than the last, and I struggled to empathize deeply without falling apart. Coping might be easier, I thought, if I could figure out how to strip suffering down to objective, depersonalized data and then methodically process it. To achieve this goal, I deliberately tried to observe grief from a bird’s-eye view, using distance as a protective shield against the anguish of individual faces and stories. I knew that sadness was intrinsic to my chosen career, and I began to wonder if detachment might be a partial antidote to—or better yet, a preemptive strike against— grief.
The culture of oncology has a long history of stigmatizing death and the dying process as well as condemning emotion as weakness.1 Sensitive to this stigma and eager to fit in, I became preoccupied with learning how to turn my emotions on and off, akin to flipping a light switch. Yet as I ran from one terrible death to another, I struggled to slip into autopilot. Ironically, the more I strove for emotional self-regulation, the more emotionally unbalanced I became. On a subliminal level, I think I was afraid that, should I succeed in turning off my emotions, I might forget how to turn them back on. Or, perhaps worse, I might not want to.
Secretly, I envied my colleagues who seemed able to move gracefully between devastating events, their objectivity and empathy unclouded by the surrounding emotional turmoil. I, on the other hand, absorbed the emotions of my patients and their families with an intensity that both blinded and consumed me. In public, I strove to maintain a facade of composure, busying myself by accounting for every medical detail. Yet privately, I wept in my car on the drive to and from the hospital. In the rare hours that I slept, my nightmares were filled with montages of vital signs and laboratory values splayed across disembodied organs, all of the images nameless and faceless.
Drowning in Unresolved Grief
In retrospect, in my drive to compute medical minutiae, I gradually lost count of what mattered. Faced with relentlessly high patient numbers and acuity, just completing the requisite daily tasks was often unfeasible; finding time or a quiet place to reflect on the life and death of each child simply did not make my to-do list. At the time, I thought that I was suffocating underneath an impossible workload; in retrospect, I was drowning in unresolved, cumulative grief.
My experience is not unique. When pediatric oncology fellows at two academic centers were interviewed about their experiences with the deaths of their patients, they endorsed feelings of sadness, guilt, failure, and helplessness.2 Fellows also expressed feeling vulnerable, inexperienced, unable to cope, and alone in their reactions to death, and they attributed their negative experiences to inadequate modeling of coping strategies, lack of grief counseling and other supportive resources, and extensive ward duties that exhausted their physical and emotional reserves.3 Not every oncologist suffers from extreme grief, yet many do experience at least some degree of these feelings at some point in their careers, suggesting the importance of making room for such emotions in our clinical practice.
Personally, my default survival strategy was to focus on the objective data; yet the more I concentrated on my patients’ diseases, treatments, and complications, the more I lost sight of their humanity, and my own. My behavior was subconscious, but I doubt that it was accidental. In difficult moments, depersonalized suffering is simply easier to tolerate. Pediatric oncology fellows admit to becoming increasingly desensitized toward death and dying throughout their training,2 and this is not a problem that trainees outgrow; oncologists likewise use words like “denial” and “dissociation” to describe how they cope with the death of their patients, and they report burnout secondary to their inability to compartmentalize grief or create sustainable emotional boundaries.4
By the end of my first year of fellowship, I had reached a breaking point. I had enough insight to recognize that I was a shell of my former self, but allowing myself time to reflect on the reasons felt like a luxury that I didn’t deserve and couldn’t afford. Whenever I felt the familiar lump swell in my throat, I redirected my emotional energy into productivity, checking off boxes on my to-do list robotically until the waves of hurt subsided. After nearly 12 months of accumulated grief, however, the dam was beginning to crack and I struggled to plug the leaks. After one particularly difficult overnight shift during which several children died, I was numbly marching through morning rounds when I suddenly felt ill. I excused myself with the pretense of using the restroom, and I barely made it there before the tears began to fall. For a few minutes, I sat on the floor beside the sink, weeping with my face pressed against my knees. Then I wiped my eyes, practiced a smile, and returned to finish rounds.
Around this time I began to realize that I had unwittingly trapped myself in a false dichotomy: competent professional detachment on one end vs inefficient empathy on the other. Unable to reconcile what I thought were diametrically opposed aptitudes, I focused on analyzing the medical data, believing this would enable me to see the full story and be the best possible doctor. In doing so, I conflated problem-solving with healing. Worse still, I failed to celebrate my patients as unique souls, each shaped, but not defined, by their illness journeys.
An Intimate Moment
In this fragile mindset, I met Taylor. It was only a few hours before he died. As I stood in the hallway of the intensive care unit and observed him through the sliding glass door, I remember thinking that I was gathering the information I needed to know: the skin hanging loosely over protruding bones, the blue-gray tinge of his lips, the shallow laboring of his sunken chest. Silently, I aggregated his physical appearance with the information obtained in my chart review: The sum of his data pointed to imminent death.
Taylor’s eyes were closed when I entered the room, but I could tell that he was not asleep. I knelt beside him and placed my hand over his. Introducing myself, I asked him if there was anything he needed. With effort, Taylor opened his eyes and looked steadily into mine. Please keep holding my hand, he said. Don’t let go.
His hand was cold and frail. My own sweating and pulsing. I won’t let go, I told him. My voice faltered, and silence wrapped around us. Taylor’s eyes closed, as tears filled mine. I don’t know how long I crouched in front of him, holding his hand. Neither of us spoke again. I remember trying to memorize his face, piece by piece, hoping somehow to capture the whole of him, to reconcile this intimate moment with the fact that I had no idea who he was. Only a few moments earlier, I had presumed to know Taylor’s story from outside the glass door; the realization of my gross error was bitterly painful and shameful in its sudden clarity as his life slipped away.
As I held his hand, I thought about everything that I did not know and would never have a chance to learn about Taylor. I felt his humanity eclipse his illness, and I let myself cry without feeling ashamed. I was stunned to realize that, when I stopped hiding behind the medical data and simply stood still in that painful moment, I felt a sense of purpose and peace that had eluded me for months.
Taylor reminded me that knowing a patient’s medical story in fastidious detail is not the same thing as knowing his story. When we miss the opportunity to learn who our patients are—their likes, dislikes, hopes, fears, dreams—we also miss an opportunity to find meaning in our work, to grieve, and to achieve the closure requisite to career longevity and sustainability.
The Sum of Their Parts
I fixed nothing, and Taylor died. But in bearing witness during those few moments, I felt like more of a healer than I had during all of the preceding year. It took me months to reach this realization, but I finally found myself able to grieve, openly and vulnerably, for the senseless loss of a beautiful young man and all of the mysterious parts of his unique personhood.
More than a year later, glimpses of Taylor still flash behind my eyes in unexpected moments, intermingling with fragmented memories of the other children who have died. My mind whirs in a frantic effort to aggregate the sum of their parts. Even now, I am haunted by the pieces that are missing. Slowly, though, I am learning how to cope and grieve—not despite, but rather in honor of, all of the pieces that embody our humanity. ■
1. Granek L, Krzyzanowska MK, Tozer R, et al: Difficult patient loss and physician culture for oncologists grieving patient loss. J Palliat Med 15:1254-1260, 2012.
2. Granek L, Bartels U, Scheinemann K, et al: Grief reactions and impact of patient death on pediatric oncologists. Pediatr Blood Cancer 62:134-142, 2015.
3. Granek L, Bartels U, Barrera M, et al: Challenges faced by pediatric oncology fellows when patients die during their training. J Oncol Pract 11:e182-e189, 2015.
4. Granek L, Tozer R, Mazzotta P, et al: Nature and impact of grief over patient loss on oncologists’ personal and professional lives. Arch Intern Med 172:964-966, 2012.