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.” For information on how you can submit your own essay for consideration in JCO’s Art of Oncology, visit http://jco.ascopubs.org/site/ifc/determine-my-article-type.xhtml#art-of-oncology.
Although his symptoms had been festering for months, it was not until James sank his teeth into a peanut butter and jelly sandwich that he finally knew with certainty that something was horribly wrong. His nose had been draining incessantly, but numerous evaluations and attempts at treatment—including a septoplasty and course after course of antibiotics—had not solved the problem. He kept smiling his increasingly crooked smile while explaining himself to a multitude of physicians. Eventually, on that fateful day, James felt a sharp twinge while taking a bite and quickly pulled the sandwich out of his mouth. He inspected the slice of bread and found one of his teeth buried inside of it.
I first met 35-year-old James about 3 weeks later, after at long last the necrotic mass that was at the root of his problem had been discovered near his hard palate. Detection of the mass was quickly followed by a biopsy—two biopsies, actually, because the first sample was nondiagnostic. After soliciting an array of pathologist opinions, a specific diagnosis was finally made: natural killer/T-cell lymphoma, nasal type. Natural killer/T-cell lymphomas are rare neoplasms that carry a poor prognosis even when detected at an early stage, and are usually rapidly fatal when metastatic. At that point, we did not know much else, but that did not stop me from facing James and a hospital room filled with his family and friends to explain the basics of his diagnosis. I described the type of tumor he had, the likely severity of its involvement in his skull, and the need for many additional tests. I suspect I was appropriately morose. Yet after my somber monologue stirred the growing tension that had been simmering in his room since he was admitted to the hospital, James turned to me and said, “I feel great, so this won’t be a problem. I’ve got to stay positive.” I smiled, offered encouragement, and left the room.
The next day, James underwent a positron emission tomography/computed tomography scan. I was still hopeful that he had only localized disease, but the mass had likely been present for quite a while, and I felt compelled to remain properly pessimistic. When the imaging study showed a suspicious liver mass, I was not surprised. I returned to the patient’s room, again faced an explosion of family and friends standing at his bedside, and explained the bad news. “I understand it has spread. That won’t stop me. I’m going to be fine.” His crooked smile, which had become slightly more jagged with the continued invasion of the tumor into his palate, returned.
Was I communicating the bad news ineffectively? Did he truly understand his grim situation? I repeated the information and the need for another procedure to biopsy the liver mass. He laughed and reassured his family that everything would be fine. I did not correct him. Although I knew I was explaining his scenario in approachable terms, he was not responding in kind. I smiled, offered further encouragement, and left the room.
I began wondering whether James’ stay-positive coping strategy was part of a larger accepted modality among patients with cancer. I discovered that numerous investigators have attempted to correlate the way patients handle a cancer diagnosis with the patients’ eventual outcomes. Although a few smaller studies have suggested a survival benefit in maintaining a persistently positive mental approach no matter how grim the situation, the bulk of data strongly supports the notion that there is no difference in outcome, regardless of the coping mechanism a patient chooses.1 In fact, many of the claims made in the positive psychology literature have been refuted or are so vague that they are not testable with any degree of scientific rigor.2 Perhaps, I thought, for some patients like James, positive thinking is a reflex, a means of facing the seemingly insurmountable struggle that lies ahead. Was it then my responsibility to meet him where he was and try to sustain his artificially created state of mind or instead to try to force him to convert to my own more realistic view of his situation?
The liver mass was biopsied, and it confirmed metastatic disease. After the findings were explained to the patient, he turned to his family and smiled. They smiled back at him. “It’s just a small bump in the road. I’m going to be fine.” Was he suffering under the weight of his family’s expectations to fight on, a common phenomenon among patients with cancer that many find unbearable yet simultaneously immutable?3 I explained to him that I admired his steadfast positivity in the wake of this challenge, which he seemed to appreciate greatly.
Yet after leaving the room, I contemplated the disparate trajectories our respective tones had taken; the more hopeless and desperate I made his outlook sound, the more hopeful and determined he seemed to become. Even more, I felt that each attempt to instill my conceptual understanding of James’ grim prognosis to him only served to reinforce his increasingly positive spin on the situation. Perhaps, faced with the increasing certainty of his mortality, his focused optimism was the only response he could imagine. Seen in that light, I wondered whether I was the problem because I was not being positive enough. Although honesty required that I acknowledge the dire nature of his disease, by offering no possibility for a positive outcome, was I merely projecting my own pessimistic nature onto a vital physician-patient interaction?
The next day, James was being transported to his first simulation for planned palliative radiotherapy treatment when he developed a high fever. The orderly rushed him back to his hospital room, and the house officers obtained cultures and administered broad-spectrum antibiotics. I came into James’ room a little later, dejected, and explained that although we had hoped to begin radiation treatment, we could not do so safely that day. I began making what, in retrospect, was a rather meager attempt at sounding hopeful, when James cut me off. “I’m not worried. I’ll get it done tomorrow, and then I’ll be doing well.”
When James, his gurney, and his nurse reached the elevator the next day to once again attempt radiation simulation, he suffered a seizure. He was once again rushed back upstairs, where he was administered antiseizure medications and observed carefully in his room for the remainder of the day. The second attempt to initiate palliative radiotherapy had been thwarted. Later that day, I returned to his hospital room and involuntarily let out a prolonged sigh. Before I could speak, James turned to me. His face had become markedly more swollen, his remaining teeth now projected in increasingly awkward directions, and his neck was covered in sweat. “I know I will do well. I can overcome this.” It was difficult to understand him the first time he mumbled something, so I asked him to repeat it. His father, sitting at his bedside, nodded approvingly.
Was James delusional? Was he trying to cheer me up or to put on a good show for his family? Or worse, was he in fact not capable of even understanding his situation, something I had assumed this entire time? Maybe he could not grasp the enormity of his condition, and his positive attitude was merely the reflection of a complete lack of understanding. I pulled his father aside privately and asked his opinion of his son’s capacity to appreciate his situation. The father sternly brushed aside any suggestion of incompetence or denial. I quickly apologized for making this suggestion, but I did not understand how he could remain so positive while facing the increasingly dire situation.
More head imaging and a lumbar puncture confirmed the worst: CNS involvement. His disease was rapidly evolving, even in the few interim days between scans, and he was in no shape to receive any treatment without suffering grave adverse effects. With his family at his side, the attending physician and I explained the bad news and his equally untenable options: succumb now or a little later by attempting to treat the disease via methods that are themselves potentially lethal. I feared more positive thinking that I could not understand, influence, or conquer. I worried that his relentless positivity would, just like his tumor, permeate his inner thoughts and point him toward the latter choice.
Instead, he chose comfort. “I get it. I’m done.” With that statement, his gathered family erupted in tears. I fought back my own tears—my first as an oncologist—and after some time, I left the room to give the family privacy. When I returned the next day to check in on James, I asked him if he was comfortable. “I am, and I want to apologize to you.” I was shocked. Apologize to me? I felt like I was the one who needed to apologize—for not being able to provide treatment, for repeatedly crushing his hope for a future, for not validating his positive thinking. With tears running down his cheeks, colliding with his beads of sweat and the swollen mountains his cheeks had become, he mumbled, “I am sorry that I can’t be positive today.” He died 3 days later.
When patients state their fears and anxieties about treatments, I often find myself validating these sentiments, stating that I would be far more worried if they were incessantly cheerful and bordering on delusional, completely denying the grave realities they are facing and the diseases threatening their lives. I rarely hear patients discuss the positive aspects of their treatments and care, as James did repeatedly. Beyond citing survival statistics and quality-of-life measures during the initial visit, I rarely validate these positive sentiments myself. After all, I do not want to get caught up in the irrational positivity of pink ribbons or yellow bracelets, and before I met James, I naively did not want to believe that the emotional sentiments I conveyed had a lasting effect on
my patients.
However, after having the privilege of being involved in James’s care and seeing his courage and dignity even while facing an impossible challenge, I now counsel differently. Positive thinking can be an important part of being a patient with cancer, or a patient facing any serious disease, if only for the comfort it provides the patient, the family, and the physician when reality forces increasingly negative choices on all of us. And just as valuable is balancing that optimism with realistic pessimism, such that during any given encounter, patient and physician can work collectively to connect these two disparate coping worlds and reach a more enlightened space, together. ■
References
1. Petticrew M, Bell R, Hunter D: Influence of psychological coping on survival and recurrence in people with cancer: Systematic review. BMJ 325:1066, 2002.
2. Coyne JC, Tennen H: Positive psychology in cancer care: Bad science, exaggerated claims, and unproven medicine. Ann Behav Med 39:16–26, 2010.
3. Holland JC, Lewis S: The Human Side of Cancer: Living With Hope, Coping With Uncertainty, 1st ed, p 340. New York, HarperCollins, 2001.
Dr. Van Allen is from the Dana-Farber Cancer Center in Boston.
Article reprinted with permission from the Journal of Clinical Oncology. © 2015. American Society of Clinical Oncology. All rights reserved.
