Daniel Rayson, MD
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.
I barely recognized her despite us having seen each other almost every 3 to 4 weeks over the past 2 years. The cream-colored bedsheets were drawn snugly under her neck, leaving only her pallid face visible. They moved imperceptibly. Her furrows, which in my mind were permanently etched into her forehead and around her lips, were now vanished; in their place, a layer of tranquility. Her eyelids gently closed over those piercing blue eyes that had pinned me down on so many occasions over the time she fought her locally advanced, then metastatic, triple-negative breast cancer: a battle she waged with equal parts grit and charm that overlay her intelligence, which was ignored at one’s peril.
She would come to every appointment with her notebook. Tightly wound teacher handwriting covered every page with an endless series of questions regarding symptoms, disease process, treatment issues, prognosis. The practical to the existential was to be covered to her satisfaction at every appointment. New twists on questions and themes previously reviewed in detail would appear at every visit. The notebook seemed to have a countless supply of pages, and we never seemed to reach the end.
She always had two or three last-minute questions that appeared just as I thought we had covered everything. Despite engaging my quadriceps, shifting in my chair, pulling off my reading glasses then putting them on again, or shuffling papers needlessly, she would turn the page and fix me to the chair with her eyes.
“Just a few more questions please…if you have time.”
Surely, she must have known that there are others waiting? Every effort I made to subliminally suggest that the appointment had come to its natural ending was futile. Of course, I had time. What else did I have to offer?
Now here she is, sleeping, chest barely moving the sheet gently enveloping her.
Time to Stop Treatment
At our last visit, her progressive symptoms were confirmed by the magnetic resonance imaging (MRI) I had ordered. Intermittent headaches, migratory numbness and tingling, right leg weakness, and then bladder dysfunction were explained by the leptomeningeal thickness that was choking her central nervous system and threatening to permanently disable her at any moment.
Her children were with her at the appointment after the MRI, helping her into the chair. They were two obviously competent and caring individuals, whom I knew lived in other provinces and whom she had kept at a distance during most of my time with her. They had their own families to take care of.
When I told her that I was not recommending any further treatment, her trembling hand slowly wavered to her lips. I remained seated, staring deeply into her eyes and hoping that I was conveying the true sorrow I was feeling while powerlessly watching the disease gripping her tightly in its gnarly arms and pulling her over the cliff, into the abyss.
In a sense, her notebook was a tool to help organize, catalog, understand, and control aspects of her clinical situation.— Daniel Rayson, MD
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Her tears started to moisten the soft, exhausted skin under her eyes. I had expected her children to rise in protest at my words, to fight for the last drops of chemotherapy and the final fraction of radiation, but their mother, the teacher, had trained them well. They sat in place, son with his head in his hands, and daughter softly sobbing. Suddenly, her arms reached out and before I knew what was happening, her damp cheek was firmly against mine, my face in her hands.
“Thank you, thank you, thank you!! I could never have coped with any more.”
She pulled back to fix my eyes in place, as she had done countless times before when asking about the next steps in her therapy.
“Do you really mean it? You are not recommending any more treatment?”
Shocked, I wordlessly nodded yes, that is exactly what I am not recommending.
“All I want to do now is to take one more trip, one more, to see my new granddaughter.”
She turned to face her son, the new father. “Can I do that now? Now that you are not recommending any more treatment?”
I nodded silently. “If your children can help with the organization, then yes, yes you can.”
Not a Trivial Excursion
I hardly knew what I was agreeing to but once I nodded yes, all control left me and now rested entirely with her and her children. This was not a trivial excursion; her new granddaughter lived at the other end of our large country. Within a few days, her children had coordinated all necessary aspects of the trip: a wheelchair at either end of the flight, notification to the airline, a ticket for her accompanying daughter. Her son planned to leave a few days earlier to prepare his family and modify a room for her to stay in. I confirmed he had a supportive family physician who agreed to be available in case of trouble and who had access to palliative care services. I also gave them the contact information of the local cancer center and called ahead, just in case.
Some of my colleagues with whom I discussed the situation gently argued against the idea.
“What if she has a seizure?”
“What if she dies?”
I brought back these concerns to her and her children shortly before they were to travel.
“What if I have a seizure? What if I die? At least I will be doing what I want. I am sure other doctors know how to take care of a seizure. And if I die, well, what then?”
I looked beseechingly at her children, trying to ensure that they understood the risks they were accepting. No papers were signed, just quiet acceptance. This was their mother, and she was going to do what she was going to do. I gave them a prescription for an escalated dose of dexamethasone. I slipped my cell phone number
What terrible power we have to deny or grant a last wish to a dying woman, and how ignorant we are when we fail to realize this fact until the very last moment.— Daniel Rayson, MD
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to both of them, making sure they understood to use it if needed, without hesitation. My patient, their mother and teacher to countless children, hugged me and settled into the wheelchair, directing her son to watch out for the door.
I moved on to the next room, realizing at the last moment that she had not pulled out her notebook. This time, I was the one asking the practical and existential questions, and she was the one with all the answers.
Over the next 2 weeks, she and her children were never far from my mind. Anxious as to my decision to authorize her travel, I imagined angry calls coming in from the airline physician, the far-away cancer center, or the family physician who would be cursing my name. But there was none of this. The phone was silent.
The next communication I received was from her daughter as a text message.
“We’re back home. The trip was worth it.”
She included a photo of her mother cradling her tiny new grandson, beaming.
I later learned that she indeed had two seizures on day 5 of her trip, resulting in a coordinated and seamless short admission to the local palliative care unit for supportive care and initiation of phenytoin. No one had called. No one cursed, that I know of.
And now, here we were on our palliative care inpatient unit. She was admitted 4 days after landing back home. Her son and ex-husband, whom I had never met, were at her side. They stood up almost royally, thanking me for taking care of her and shaking my hand in appreciation. I held on to the son’s hand a little longer than usual.
Reflecting back now many months after her death, I recall all the times I would have to control my impatience with her interminable questions, always regretting that my answers could never fully give her the peace of mind that she sought. In a sense, her notebook was a tool to help organize, catalog, understand, and control aspects of her clinical situation. She had told me that she would wake up from sleep with questions and always turn on the light to write them down. Those questions were the most important, she said.
Only when the end was clear and the treatments stopped did the notebook close. Only then was she seemingly at peace with everything that she had fought so hard to understand and control. I can still see her two faces. The first is with furrowed brow and piercing eyes studying her questions, notebook gripped tightly, with page turned to the most recent entries and reading out in her teacher voice, waiting for me to put my hand up with the answers. The other is as I left her, fascinated by the peace she exuded days from death, her face a calm pool of water, hands resting gently, no questions to be asked or answered.
I think that last trip allowed her to turn to the final page: the one that let her accept the inevitable and enabled a refocus of her energy away from fighting disease and toward her last goals in life. It was only later that I realized her notebook was not by her side in that hospital room.
Granting Last Wishes
What terrible power we have to deny or grant a last wish to a dying woman, and how ignorant we are when we fail to realize this fact until the very last moment. How many others have needed the same but have not had the courage, support, or guidance to ask? How many have I denied, by prescribing another line of treatment or provoking a sudden toxicity that could have been avoided by granting a last wish instead of moving to the next line of treatment?
I knew I would never see her again once I left the hospital room.
At the time this article was published in the Journal of Clinical Oncology, Dr. Rayson was practicing at the Queen Elizabeth II Health Sciences Center and Dalhousie University, Halifax, Nova Scotia, Canada.