On Denying Denial
Authors: Daniel Rayson
Journal: Journal of Clinical Oncology (2013)

DOI: 10.1200/JCO.2013.52.6228 I was providing clinical coverage for a vacationing colleague and had an internal medicine resident working with me in clinic. One of my colleague’s patients had been slotted into my clinic space that Tuesday morning for an assessment before her next cycle of chemotherapy. For the patient, there was a clear understanding that I was a stand-in for her real oncologist, with my role being to adjust, approve, and order her next round of chemotherapy. From my perspective, the patient was someone whose role was to have tolerated cycle 1 well, requiring neither dose adjustment nor supportive care medication overhaul. Sometimes this is the easiest type of clinical encounter, one without baggage or expectations. The resident came out of the examination room and found me in the work area. She dutifully reported all pertinent positives and relevant issues from both the functional inquiry and the physical examination. The blood work was satisfactory, and supportive care medications were well suited to maximize her tolerance of therapy. All was well until the resident said, “She reports excellent energy, she is smiling all the time . . . obviously in denial.” My attention was piqued both by her comment and the slightly pompous, opinionated way in which it was expressed. Her report of a patient being in denial was not an objective sign but a judgment based on a brief clinical encounter with a stranger. How many times have I heard that same opinion expressed with a similarly condescending tone by students and caregivers of all persuasions and ages? “What exactly do you mean by ‘she is obviously in denial?’” I asked somewhat pointedly. “You know, not dealing with reality. I don’t think she understands the situation she is in,” she replied. This particular patient had experienced chemotherapy before. Approximately 3 years before this clinic visit, she had received six cycles of intensive adjuvant chemotherapy subsequent to a modified radical mastectomy for a high-risk breast cancer. All hopes were riding on her adjuvant therapy and, until the day she presented to the emergency room with rapidly progressive abdominal pain and fever, the torment of nearly 5 months of chemotherapy had seemed worth it. The CAT scan however suggested otherwise, documenting large-volume liver metastases, biopsy-confirmed as recurrent, triple-negative disease. She was here now for her second cycle of platinum-based chemotherapy and was not conforming to psychodynamic expectations. She was living “in denial,” I was told. That same evening after clinic, I visited one of my patients in the hospital. She had been admitted 3 days before with an upper gastrointestinal bleed as a result of gastric varices. I had met her roughly 6 years ago, when she presented with metastatic breast cancer with smallvolume liver metastases. She had been on continuous therapy over this time period with a variety of systemic agents. Slowly, but irrevocably, the disease increasingly took up available space within the liver and made its way to her brain. It was now approximately 7 months after her brain radiation when she presented with torrential upper gastrointestinal bleeding, seemingly stabilized, but at the cost of deepening jaundice and crushing fatigue. She was always with her husband. At every juncture, during times of stability or progression, they would carefully consider my words, weigh the pros and cons, and always agree to proceed with more treatment. If I didn’t recommend more treatment, they would find a way to make me see that there were no other relevant options. I never met their children. I never had a discussion of her wishes in regard to resuscitation. Each time I tried to broach either subject, they would join forces to divert the focus away from issues related to death and toward the next steps in treatment. They were both living in denial. Until today, when he greeted me with both hands firmly gripping my forearms. “I know she’s going. She knows she’s going. Please don’t move her.” My visit with her confirmed his dire prognostic estimate in my own mind. His concern arose from a discussion he had with one of the nurses who suggested that his wife might be moved to a palliative care floor. “She only has a few days left. No one’s told me that but I know, I know my wife. She knows it. Why move her for a few days? It would just take away all of her hope. Please don’t let them do that.” On the drive home that night, these two cases preoccupied my thoughts. Both patients could easily JOURNAL OF CLINICAL ONCOLOGY A R T O F O N C O L O G Y VOLUME 31 NUMBER 34 DECEMBER 1 2013