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.”
We first saw Anita on Tuesday morning. Just 21 years old, her wicked laugh and sarcastic sense of humor had been weathered by weeks of sleeplessness, worry, and pain. Her parents at her bedside, she peered at us with the cautious look of somebody who had little left to hold on to; somebody whose ability to see the beginning of the next day depended on the carefully weighed decisions of the day before. Eleven months earlier, she had her first encounter with juvenile ovarian cancer; 10 kg of tumor were resected from her barely adult abdomen. Since then, she had endured a surgical and cytotoxic offense in an attempt to control the rapidly spreading tumor. After undergoing two operations and two rounds of chemotherapy, her last hopes of surviving her terrible disease were pinned on a trial treatment, scheduled to start the next week.
When she came to the emergency department the evening before we met her, she struggled for breath against masses of malignant fluid enveloping her organs. Needing every advantage of gravity to perform their life-giving task, her lungs would not allow her to lie flat long enough for a scan. Compressed by the mass of resurgent tumor, her kidneys were failing. Red numbers detailing her pathology report lit up the computer screen, and we knew that catastrophic multiorgan failure was imminent.
Time to Return Home
PARALYZED BY the immense task of trying to save this young girl from death’s imminent grasp, we were grateful for the arrival of Anita’s treating oncologist, and my boss, who offered much-needed perspicacity:
“I think it’s time we talked about when you would like to go home,” she said.
At these words, Anita’s mother shifted forward in her seat, exhaled, and said in her distinct Kiwi accent: “I wondered whether we were getting to that stage.” A young lady of proud Maori heritage who had come to Australia for work opportunities, it was important to Anita and her family that when it came to dying, she could return to New Zealand to be with her family in her last days.
As we talked more and more, it became increasingly apparent that Anita did not want further life-prolonging interventions, such as plastic tubes placed in her side to drain her swollen abdomen or congested kidneys. Returning home was what was most important to her now. Such a task would not be easy; by this stage, Anita’s physical capacity was limited such that mobilizing just a few meters left her breathless. It was anybody’s guess as to how her beaten body would withstand a flight. Anita would require a different kind of care to get home.
Young Medical Escort Joins Journey
OUR TWICE-WEEKLY ward multidisciplinary meeting was usually a staid affair. Each patient is discussed, and one or two members of the medical, nursing, and allied health teams might debate an aspect of that person’s care before moving on to the next patient. As we began to discuss Anita’s case, however, the meeting took on a new life. Hours later, a plan to return her to New Zealand was unfolding. Our tireless social worker had organized flights to Auckland the next day, with the generous assistance of two charities. Meanwhile, our palliative care team formulated a symptom-management plan and community palliative care linkup in her local area. However, there remained a small but significant chance that Anita would not survive the flight home, necessitating a medical escort to care for her in the event of her deterioration.
“Our trip was all that stood between her and death itself, but Anita carried herself with such grace. I couldn’t imagine having to be so brave.”— Samuel X. Stevens, MBBS
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As the resident—neither crucial to running the ward nor too inexperienced for the task—I was strongly encouraged to consider the role. I felt hesitant about agreeing to participate in the trip: Dying is a phase of life that I believed was too important to hinge on a 20-something-year-old resident’s decision-making ability. However, with other options becoming less and less viable as the result of financial and time constraints, I agreed to go, with the support of my team.
I arrived at work the next day, nervously expectant of our departure. There was a buzz about the ward; it was as if each member of our tight-knit oncology team was coming to New Zealand with us. Anita looked weak but determined that morning, after what she described as her best night’s sleep in weeks. Perhaps the resolution of knowing that the treatments, scans, and procedures were finally at an end gave her some reprieve. Our trip was all that stood between her and death itself, but Anita carried herself with such grace. I couldn’t imagine having to be so brave. However, one only had to glance into her hospital room to see where she found her strength. That morning, the tiny space was enlivened by 20 or more uncles, aunts, cousins, and small children who ran about the room. Although Anita was dying, this room was very much alive with the immutable love of her closest family and friends. For what are we but the sum of what happens to us and with whom?
Before leaving, I had the privilege of being asked to join Anita’s family in prayer for our safe departure. A profound stillness descended as each of us joined hands, and Anita’s loved ones took turns saying their goodbyes, thanks, and well wishes for the journey ahead. Steeled by her family’s love, Anita departed the hospital that morning accompanied by her mother, her twin sister, and myself.
In many ways, the trip to New Zealand was the embodiment of the Grace we had called upon in that prayer—from our taxi driver, who diligently drove his cumbersome van so nimbly around some of Sydney’s most potholed roads to the wonderful Qantas staff, who did everything in their power to help us navigate their own version of potholes (ie, airport security). As I waded through the Sydney airport with a cooler full of narcotics and a mind thick with potentialities, I could hardly believe what I was being called upon to do. Together we anticipated situations that might cause her pain, and we ensured that she had enough medication on board to handle the tussling of getting on and off an aircraft. Not game to relax enough to enjoy the in-flight movies, I remained on edge until at last we touched down on Kiwi soil.
“In a hospital system that sometimes stretches us to cynicism, my experience with Anita made me recall the reasons I was drawn to practice medicine in the first place.”— Samuel X. Stevens, MBBS
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Home at Last
THANKFULLY, ANITA endured the trip with only minor difficulties. As the other passengers departed the aircraft, we fussed about getting Anita’s wheelchair ready to deliver her to the front door of the aircraft. Anita, however, had other ideas. Dependent on oxygen just minutes ago, she rose and marched defiantly to the front of the aircraft, as if the very life force to which we had offered our intentions hours ago had come alive inside of her. Home at last.
With an entourage of family to meet us, we soon arrived at Anita’s family home, and I found myself sharing my first meal of “Maori tucker,” or native Maori food. I was quickly learning why Anita had told me that it was home-cooked food that she longed for the most. As we ate, cancer, pain, and dying were traded for the peace of that meal with family. At that moment, I realized that there was nothing I could say or do to ease this family’s pain, except to have helped in some small way to bring them together again. A few hours later, having handed over Anita’s care to the local palliative care service, I lay down on my hotel bed. My mind and my body were spent, but I could not sleep that night. My journey was coming to an end, and soon enough I would join another ward round, just like the day I met Anita.
Greatest Joy and Privilege of Doctoring
WHY HAD death chosen this vivacious girl, 5 years my junior? A few days later, I received a message informing me that Anita had died peacefully at home.
In a hospital system that sometimes stretches us to cynicism, my experience with Anita made me recall the reasons I was drawn to practice medicine in the first place. A complete stranger, I was welcomed into Anita’s family at this most intimate moment of crisis and was able to contribute to caring for her at a most unique and vulnerable time of her life. Truly, this is the greatest joy and privilege of doctoring.
As a practicing Catholic, I was reminded of words from David Haas’ The Servant Song, which for me sums up our mission, not only as doctors but as human beings, whose imperative—underlying everything that we do—must be to care for one another.
“We are pilgrims on the journey,
We are travellers on the road
We are here to help each other
Walk the mile and bear the load.” ■
At the time this article was published in the Journal of Clinical Oncology, Dr. Stevens was practicing at the St. George Hospital in Sydney, Australia.