The ASCO Post is pleased to reproduce installments of the Art of Oncology as published previously in the Journal of Clinical Oncology. 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 jco.org and search “Art of Oncology.”
Laura Rooms, MD
Flashback to almost 20 years ago: “I’m not ready for this,” I cried to my father that morning. “Honey, no one is ever ready for this,” he replied.
Summoned to the intensive care unit from my bed in the waiting room, I knew immediately upon seeing the neurosurgery attending that he did not come in at 2 to tell me things were going well. We had been hoping to buy some time with a surgery for my husband, who had a relapsed brain tumor. Postoperatively, however, Randy had experienced a large stroke. His physician offered to temporize the effects with another surgery to relieve the increased pressure in his skull. Even if successful in the short term, however, the ultimate outcome of a recurrent high-grade glioma was still death. Also, the loss of his entire left hemisphere would be debilitating, and the time we bought would likely be spent with him struggling to communicate or perform even simple functions. From a purely medical perspective, the path was clear. For my heart, however, it definitely was not.
As I stood in that intensive care unit, looking at images of my husband’s damaged brain and listening to the physician (who seemed to have ultimate power over my husband’s life at that moment), the professional clarity to which I was accustomed eluded me. Lost, frightened, alone, and uncertain, I called my physician father to help me make the urgent decision that would change my world.
I do not know what I expected. I think I knew my decision and wanted reassurance that it was the right one, or maybe I wanted him to decide for me. I can still hear the grief in my father’s voice as he told me he loved me, but the decision was mine alone. I remember the overwhelming sense of loneliness, knowing the person most affected by my choice could not speak up for himself. I had accepted that this moment would come but thought I had months, or at least a few more weeks, to face it. Ultimately, I elected to withdraw care and spent the longest 16 hours of my life watching him die.
Odd Juxtaposition of My Life and Theirs
LAST NIGHT, a patient of mine died. He had acute lymphoblastic leukemia—the kind of childhood cancer that is supposed to produce long-term survivors. Despite all available support, the multiorgan failure he experienced as a complication of chemotherapy kept progressing. Earlier that day, the pediatric intensive care unit attending physician and I sat down with the patient’s mother to discuss a do-not-resuscitate order. Shortly after midnight, the family requested withdrawal of care, and my patient died quickly.
Unfortunately, this is not uncommon in pediatric oncology, which is my specialty. Yet, as I showered this morning while I fielded texts about snack money from my 14-year-old and food requests from the cat, I could not help but reflect on the odd juxtaposition of my life and theirs. Although I continued with life as usual, mired in the details of being a working mother, the life of my patient’s mother had ended— or at least the life she knew did. It may not have happened literally in the blink of an eye, but I suspect it felt that way to her. I remember the suddenness with which I felt my life was taken from me.
“Our job as physicians does not stop with the physical body. We owe our patients and their families our presence, our guidance, and our support, especially at the times when they feel most alone.”— Laura Rooms, MD
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Tragic Loss of a Precious Life
THE SCENARIO recalls one I experienced as a second-year resident. Although the details are sketchy, I remember a sick toddler with slow, progressive deterioration in her medical condition. Day to day, one or two parameters might improve, but the overall trend was unmistakable to the medical staff who cared for her. Her family, however, saw the situation differently; each minor improvement was another glimmer of hope. Our differences of viewpoint led to an almost hostile stalemate. They did not understand why we were so quick to want to remove support, and we did not understand their denial of reality.
Then, one night when I was on call, for reasons that are still not completely clear to me, the family decided that it was time. I extubated their baby, and she died shortly thereafter. What I remember most about that night is certainly not a sense of “well, at last they finally came to their senses,” but rather the sudden awareness of what this meant to the family. For the first time, I let go of my medical knowledge and let myself feel what they felt—the tragic loss of a precious life. The medical futility assertions and the great intellectual case for withdrawal of care finally became to me what it was for them—unimaginable. A world without their child, forever. Although I was still just a fledgling pediatrician, I am ashamed of what I see now as my lack of empathy.
Consciously Choosing to Remember
THE INCIDENT happened shortly after the death of my husband. Perhaps my lack of compassion stemmed from a self-protective mechanism; it was simply too soon to personalize a death. The lesson learned for me, nonetheless, is clear. As I embarked on my pediatric oncology career, I consciously chose (and still choose) to remember the sense of loneliness, void, and uncertainty that I felt the night Randy died. I also strive to respect those feelings in the patients and families for whom I am called to care. If the decision seemed impossible to me, despite my medical knowledge, how equally (or more) impossible must it seem to them?
I fall short sometimes. I am human, after all, and occasionally forget that, although a child may be a patient to me, to the parents he or she is the whole world. I may cry, mourn, regret for a few days. I may wistfully think years later of that patient I cared about so much who did not do well. I hope that I learn something to improve how I care for other children. But I will not wake up every morning with a piece of myself gone forever. I will never count birthdays that would have been, holidays with an empty seat at the table, or hands that I can no longer hold.
As a physician, I have often thought that a few weeks seems just a short period of time, insignificant in the face of a lifetime. Yet when they are spent with someone you love and will lose forever, they represent an eternity. They offer time—to be sure, to see if the medical staff is wrong, to hope for a miracle, or maybe for one more adventure or family get-together. I remember the battle between my heart and my head that morning when I decided to give up those few weeks that belonged to my husband and me. Letting go of the hope of a miracle proved to be almost impossible when it was my miracle I was losing, not someone else’s.
The loneliness of end-of-life decisions is overwhelming, and I will never forget it. More than once, I have shared my father’s words with a patient’s family, trying to let them know that it is okay not to be okay. I try to bridge the loneliness, even if only minimally and temporarily. Our job as physicians does not stop with the physical body. We owe our patients and their families our presence, our guidance, and our support, especially at the times when they feel most alone. After all, no one is ever ready. ■
At the time this article was published in the Journal of Clinical Oncology, Dr. Rooms was on staff in the Department of Pediatric Hematology/Oncology at the University of Oklahoma Health Sciences Center, Oklahoma City.