Never Say Never
Authors: David S. Ziegler
Journal: Journal of Clinical Oncology (2015)

DOI: 10.1200/JCO.2014.58.7717 She was elderly, slightly confused, and very, very worried. I was not quite sure why. It was a minor procedure—a routine angiogram, one of a dozen to be performed that morning. The risks were so small that the job of admitting her had been handed to me, then a final-year medical student, with a simple onepage form to fill out. I took her history in 5 minutes, listed her current medications, completed the physical examination, and prepared to move on to the next patient. But she grabbed my arm and asked me if she would be all right; she was worried she was going to die. I was not quite sure what to say. We had been taught about informed consent, warning patients of all risks—even minor ones—that you can never say never in modern medical practice. Yet the consent had been signed, the risks had been explained, and the patient was now simply looking for reassurance, for comfort, for a human touch. “Don’t worry,” I reassured her. “You’ll be absolutely fine. There’s nothing to be concerned about; you’re not going to die.” She was not fine. An hour after the procedure, things started to go wrong. Her abdomen rapidly distended, her toes turned black, and she starting writhing in pain. The angiogram had triggered a shower of cholesterol emboli from the aorta, resulting in the infarction of most of her bowel. It was a rare but well recognized and potentially devastating complication. Within a short space of time, she had died. I berated myself for telling her she would be okay, for telling her she would not die, when I knew that it was always a risk—a small but tangible possibility. I did not feel that I had jinxed her, but I decided never to reassure a patient again that I had control of his or her destiny. I was left with a deep unease, unsure from that time of the best way to convey risks and prognoses to patients and at the same time provide a human touch. Is that not what patients are looking for in a physician? Someone they can trust with their life, someone they are confident will get them through? How can we balance a rational assessment of risk with our patients’ desire for hope and reassurance? We cannot predict the future, but is that not what our patients are asking us to do? These questions continued to puzzle me as I embarked on a career in pediatric oncology. Here the risks of my patients dying were much higher than for those undergoing a routine procedure, but I felt the parents looked at me with the same fears, the same worries, hoping that I could provide them with the same absolute reassurance—that I would ensure their child would survive. For the first 2 years, it went well. All my patients went into remission. Their prognoses were good, their adverse effects manageable, and their outlooks promising. I was optimistic with my patients—most had a good prognosis—and I felt my optimism was fully justified. Then my first patient relapsed. He had highrisk neuroblastoma, which is incurable after relapse. His parents knew this; they were understandably distraught but were still looking for hope. So was I. His tumor was a little different, I thought; there were some favorable prognostic features, and the relapse was localized and outside the previous radiation field. New drugs were available. Moreover, his parents insisted, even if there was only a 1% chance of cure, they could not give up; they needed to hope. We embarked on more treatments. Although the tumor responded, the results were short lived; the tumor recurred and grew with a galloping rapidity. His treatment focus turned to palliation, and he died a short time later. Although the parents were grateful that we had tried everything, I felt that I had failed, and I started to wonder: When does hope become false hope? Then another patient presented with a newly diagnosed osteosarcoma that should have been treatable and highly curable. But during her workup, the prognosis grew bleaker. Dozens of metastatic lesions appeared in lungs and bones. Her chance of cure was less than 10%, but again, I thought her case was a little different. Her lesions responded well to chemotherapy, and as prolific as they were, all the metastatic lesions were resectable. My colleagues disagreed. They suggested the hope I was offering really was false. After a heated discussion at a multidisciplinary meeting, I pulled her parents aside to tell them what my colleagues thought—to reinforce the poor prognosis and to make sure they understood the statistics. They wanted to continue treatment; JOURNAL OF CLINICAL ONCOLOGY A R T O F O N C O L O G Y VOLUME 33 NUMBER 5 FEBRUARY 1