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.”
Adrienne Boissy, MD, MA
Mikkael A. Sekeres, MD, MS
My patient, a man in his late 60s, had driven from Virginia to Cleveland to see me about his myelodysplastic syndrome. His wife sat in a chair next to him, and his stepdaughter, a neurologist at my hospital, sat in a chair along a different wall of the examination room. Although I could fool myself into thinking that he crossed state lines because of some particular expertise I could offer, in reality his stepdaughter initiated his first visit with me, perhaps so she could help coordinate his care or perhaps so he could connect with her and his grandchildren.
At his first appointment, a couple of years earlier, his disease was in a milder form, causing abnormal laboratory values but otherwise not affecting his life in a major way. He was garrulous and minimized the seriousness of his disease, as his wife and stepdaughter gave each other knowing glances. Now, he had reached the final stages of illness: his bone marrow was spent, and he could not survive without transfusions of red blood cells or platelets every week. He looked it, too, with bruises covering his arms, a tremulous voice that once had filled the room, and a palpable weariness. He had already exhausted the treatments we had available, none of which worked particularly well to undo his disease and the damage it had wrought.
“What drug should we start next?” he asked me.
I glanced over to his wife. She looked up from where she had been staring at her own hands, folded in her lap, and considered him. When her first husband had died of leukemia, she received little help caring for him. Now she was going through the same process with another husband. She accompanied him to every appointment, but what had started as a let’s-figure-out-a-way-to-beat-this-together gusto in her approach to his cancer 2 years ago had dwindled to an anticipatory dread of what was to come. It couldn’t have been easy for her. Over the past few months, as his bone marrow’s function deteriorated and his strength withered, he had made other comments about aggressive therapies or elaborate travel plans that far exceeded what his body could tolerate. His stepdaughter shook her head slowly, possibly in disbelief that he was not recognizing his own imminent demise.
Similar Position Years Earlier
I had been in a similar position, years earlier, with my own father when I accompanied him to his doctor appointments. Morbidly obese, with the attendant heart disease and diabetes, my father would eat responsibly for 48 hours before seeing his primary care physician; then he would claim he was on a diet and rarely indulged in his particular vice, potato chips. I shook my head the same way and could imagine what she was thinking.
Did my stepdad really just say what I think he said?
I was not going to miss this appointment and came believing that today would be the day he would acknowledge he was dying and accept a new course—one that included hospice care. We had tried every therapy and it was time to consider quality of life rather than quantity. In my neurologist mind, the data were clear; the drugs had not worked.
But I also recognized that my readiness to accept the inevitable differed from his and from my mom’s. In my daughter mind, my feelings were much less cut and dry. I watched hours go by, many days each week, as he received blood transfusions, only to see his blood counts crash the next day, back to where he started. I saw my mom recruit neighbors to help bring him to appointments as she cooked for him, clean him up when he could not make it to the bathroom in time, coordinate his doctor visits, and rush him to the emergency room in the middle of the night when he had fevers that could truncate his already tenuous grip on life. These acts of caregiving were given selflessly, but they took their toll, and before long, my mom had acquired that same burdened look as the long-term caregivers of my own patients.
I lost my father when I was 3 years old. He was diagnosed with leukemia before my parents met, and they married knowing he would die a young man. They moved to Washington, DC, away from family, so he could have access to better health care. He was so transparent about his illness, even in job interviews, that it kept him from being employed. Later in his illness, my father brought humor to his impending death—even dressing up as a white blood cell at Halloween. He also acknowledged that he was dying, as my mother cared for him, alone, at the end of his life. Intellectually, I know no one could fill his shoes, but on some level, I was seeking a father figure whom I could admire, respect, and love.
Denial can be self-protective—we each have only one life to live, and our reflex is to look away from the abyss.— Adrienne Boissy, MD, MA, and Mikkael A. Sekeres, MD, MS
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My relationship with my stepfather was much more complicated. I did not like him very much when we first met. Unlike my father, he was loud, always counseled me about looking more like a doctor, drank too much, and was adept at denial. When he saw a hepatologist at some point for liver abnormalities, he concluded that the care plan included cutting back from three or four to one or two martinis a day. Later in his illness, after meeting the palliative care doctor, his summary of the visit was that she had a great blue sweater. As a daughter searching for meaning, connection, and a father, I felt lost. I wanted him to try harder.
Yet now, decades later, here we were. My mother’s quality of life had evaporated, and he was asking for more chemotherapy. This is the experience of many caregivers. I was angry about how he seemed not to notice her gestures and sacrifices; how his illness had consumed our lives. I was sad about losing him, protective, afraid, but angry too.
So, I was ready . . . ready to hear him say that he was dying. And embarrassing as it may be to admit, I wanted his suffering to end, and ours too. I needed him to say it and wondered how his doctor would handle his question.
Knowing When to Stop Treatment
I turned from my patient’s stepdaughter back to my patient. “You have already tried so many drugs; nobody could ever accuse you of not doing enough,” I reassured him gently, wondering if that was what he needed to hear. He nodded and grimaced, probably guessing what I was about to say. I recounted the course of his disease from the time he was diagnosed and the many treatments he had received. As I revisited his illness, his stepdaughter looked from me to him to assess his reaction to what I was saying.
“I don’t think any further treatments will make you better, but I do worry they will make you feel worse. Instead of talking about chemotherapy I was hoping instead you could tell me whether or not you wanted to continue receiving transfusions, with all that it takes out of you to come to the clinic,” I concluded. He had been slouching in his chair, listening carefully, but then sat upright as he answered.
“I understand what you’re saying, but I don’t want to spend any more time talking about the fact that I’m dying,” he answered. I looked over to his stepdaughter, as she shifted in her chair.
Maybe on some level you know you have been dying, but every other behavior in the prior months, even years, belies it. I wanted to say this to my stepdad, but I held my tongue. This was as close as he was going to get to acknowledging that the end was near. I took a modicum of solace in that.
“But I do want to continue with transfusions,” he said.
I was incredulous. My face was probably beet red as I searched his doctor’s reaction for some validation of how disconnected he seemed to be from where his body was taking him. The neurologist part of me had left the room—this was all daughter.
“How will you know when to stop?” I finally erupted, frustrated. Couldn’t he see how this affected all of us, how even the transfusions could not stave off the inevitable? I needed a commitment from him about when this futile charade would stop, for me, my mom, and our family.
“I’m not sure, but I think I’ll know,” he answered quietly.
I persisted. “Yes, but how?” My stepdad did not answer. His doctor started to say something, and then hesitated, as if considering his words first.
Self-Protective Nature of Denial
I watched the back and forth between my patient and his stepdaughter. A number of my patients have been in denial about the seriousness of their disease, sometimes trapped in that Kübler-Ross stage en route to acceptance of their impending death. Denial can be self-protective—we each have only one life to live, and our reflex is to look away from the abyss. It can be a reaction to the overwhelming loss of control that comes with cancer. But it can also be giving, and some engage in denial almost deliberately to protect their families from a grim future without them. As the end approaches, most recognize it, though, and make concrete decisions for how they will spend their final days.
The injustice of the illness, of a life cut short, feels even worse when you are taking care of a person with a fatal disease that he doesn’t want to talk about.— Adrienne Boissy, MD, MA, and Mikkael A. Sekeres, MD, MS
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“I believe you,” I told him, before he could reply to his stepdaughter. At that moment, I felt as if he needed an ally and could use my support. His wife remained quiet, her hands clasped in her lap, while his stepdaughter fumed. His denial was frustrating to all of us, but it was not malicious. His eyes met mine, and I saw in them a cauldron of emotions—a mix of fear, exhaustion, and a bit of pride.
He nodded to me as we all thought about his future, in the silent room. His stepdaughter looked pensive.
Denial has a real purpose. It protects people from having to face the darkness of their own mortality. I understand its benefit.
The Darker Side of Denial
But what rarely gets discussed is how denial hurts everyone who loves that person. It denies the chance to sit in the sorrow together. It denies others their own emotions. It denies meaning and authenticity at a time we need it most. And although we are expected to be empathic soldiers as caregivers, the injustice of the illness, of a life cut short, feels even worse when you are taking care of a person with a fatal disease that he doesn’t want to talk about.
Weeks passed, and just before my stepdad died, I went to see him. He was bedbound and in hospice at home. By this point, he had stopped receiving transfusions. I approached his bedside.
“I’m sorry, I just can’t go on,” he told me. I burst into tears. Did he think he was saving me from his death all this time? I hugged him and said we would be okay; that he could go.
My patient’s stepdaughter called me to let me know that he had passed. We often talk about honoring someone’s wishes at the end of life. In patients who are in denial, this becomes so much harder when the person you love—or the patient you treat—will not engage in a conversation about death.
When my stepfather got sick, I felt angry. As a neurologist, I have watched countless people decline from degenerative diseases and have patiently led multiple family meetings to talk about death. As a chief experience officer, my team and I designed relationship-centered communication for thousands of clinicians and try to model patience, empathy, and presence.
But as a daughter, I envisioned a father who would hold my hand, talk about his wishes, and let me in so we could endure the suffering together. I wanted to be a real part of this grief and loss the second time around. What I got was a stepfather who denied he was dying for months.
At the time this article was published in the Journal of Clinical Oncology, both Drs. Boissy and Sekeres were practicing at the Cleveland Clinic Taussig Cancer Institute, Cleveland, Ohio.