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.
Edmond Ang, MB, BCh
It was a sweltering afternoon in tropical Borneo. The ceiling fan spun lethargically, ineffectual as it simply circulated the humid air. The ward was packed to the brim. With no beds left, patients were lying on mattresses arranged end to end along the central aisle. The atmosphere was akin to a market; nurses were negotiating the narrow paths, and family members were frantically sponging their sick relatives. It was noisy, crowded, and busy. Organized chaos.
First Eugene: ‘A Cheerful Composure Throughout’
On the dusty floor, in the corner of the room, I met Eugene for the first time. He was a smallish, 50-year-old native of the island with crinkled, baked skin. His gaunt frame was in stark contrast to his oversized, dirt-stained shirt, a few buttons of which were missing. His abdomen was disproportionately large, made all the more obvious by the extent of his cachexia. A pair of well-worn sandals lay next to his callused feet. His black hair, graying at the sides, framed his hollow cheeks and yellow-tinged eyes. However, as he spoke, I could not help but notice his lovely smile and darkly stained teeth from the incessant chewing of betel nuts. Sitting next to him on the floor was a young man, probably not older than 30 years of age.
Eugene lived with his four children in a relatively isolated, picturesque village in a valley surrounded by the towering mountains of the Crocker Range. His wife had unfortunately died as a result of cerebral malaria soon after the birth of their fourth child. Although they were subsistence farmers, they were well provisioned by the fertile land of the valley. His close-knit community included his extended family and fellow villagers. Their health care was provided by a visiting team consisting of a primary care physician, nurses, and medical assistants.
Eugene had advanced pancreatic cancer. His primary care physician had suspected a diagnosis of malignancy for a while but had had difficulty convincing Eugene to undergo a diagnostic workup at the large state hospital 50 km away. Initially, he procrastinated, apprehensive about navigating his way through the big city and the financial implications of being away from work. But after much persuasion from his community, he yielded. By consensus, a young villager who had been to the city before was chosen to accompany him.
At the time of his diagnosis, he was symptomatic, with declining functional status. Eugene was told that he had incurable cancer and that his life expectancy would be measured in months. In the absence of dedicated oncology or palliative care services in the region, no viable local or systemic treatment options were offered. He was consequently discharged home to the care of his primary care physician and family.
Surprisingly, he had had a good few months at home. His community rallied around him, providing the physical and emotional support he needed. The communal nature of his society meant that his family and friends lived and worked in proximity, providing him with close companionship. The pastor and members of his local church assisted him with spiritual and existential struggles. His symptoms were well managed by his primary care physician, who had embraced the task of providing him with basic palliative care.
Eugene commented on how accessible his family physician had been before, handing me a simple note containing a message from his physician requesting that a therapeutic paracentesis be performed. As the intern of the general medical ward at that time, I had the privilege of being part of Eugene’s care for several months, until I was transferred to another service. I cannot recall how many therapeutic drains I performed for Eugene, but I can attest to the fact that he maintained a cheerful composure throughout all of our encounters, never failing to express his gratitude for the care we were able to provide him, which he felt went far beyond his expectations.
Crocker Range Rainforest, Borneo
Second Eugene: Disappointed by Expectations
Ten years later, I met another patient named Eugene. This time, I was on the other side of the world, sitting in a comfortable lounge with a commanding view of a leafy suburb on the east coast of the United States. It was a balmy summer afternoon, but the air was conditioned to just the right temperature. Eugene sat on the opposite end of the lounge, with his eyes fixed on a half-empty mug.
Eugene was no stranger to me. He was a member of my extended family. I had flown in from Chicago that morning, fresh from the exhilarating vibe of the 2018 ASCO Annual Meeting. Being an oncology fellow did not spare me from the initial shock of noticing how different Eugene looked since I had last seen him. He appeared frail, with his skin now clinging to his bones. He had lost all his hair. Dark circles under his eyes spoke of countless sleepless nights. His usual exuberance was now subdued. However, his piercing eyes still revealed a glint of his fighting spirit.
Eugene was a legendary figure within our family. He was a professional who immigrated to the United States decades ago after securing a scholarship at an Ivy League university. After concluding an enviable career several years ago, he had looked forward to many years of restful retirement. Other than his supportive wife and adult son, the rest of his family lived outside the United States. Six months before our encounter, the news of his diagnosis of advanced pancreatic cancer had devastated his family and friends around the globe.
Eugene had access to a world-class comprehensive cancer center. At presentation, he underwent a state-of-the-art diagnostic evaluation, which included next-generation gene sequencing. He was subsequently referred to a medical oncologist who was a prominent pancreatic cancer researcher on the world stage. During his first clinic consultation, he was presented with multiple systemic treatment options, including clinical trials, and was offered a range of support services.
And yet, he was miserable. At the time of our encounter, he was receiving second-line palliative chemotherapy while contending with disease-related symptoms and treatment-induced toxicities. He was disappointed that his expectations for better treatment response and quality of life did not materialize. He felt abandoned by his oncology team, stating that he had only met with his oncologist twice over the preceding months. He described those visits as brief and awkward. In the interim, Eugene had seen many different clinicians, a system that he felt compromised the continuity of his care.
His wife and son stood by him, sacrificing much of their time to support him. Unfortunately, his extended family was unable to provide him or his family any meaningful help or companionship, given the geographic divide.
Eugene pointed to the self-operated drainage catheter in his abdomen. He was grateful to have it in place but had run into substantial problems using it and had difficulty finding help. When he attempted to contact the designated nurse practitioner, he had often been channeled to voicemail. Frustrated, he bemoaned the lack of true access to his clinicians and the consequences of what he perceived to be a fragmented system. On a number of occasions, he had no other recourse but to walk into the urgent care unit.
Unfortunately, working closely with patients with cancer over the past 5 years had not rendered me immune to the emotional turmoil of seeing a family member struggle. If anything, working in oncology made Eugene’s experience every bit more personal. As we concluded our heartfelt conversation with an embrace, my emotions were a mix of sadness and gratitude: Sadness for the suffering and impending loss of a loved one; gratitude for the time we had together and for the fulfilling privilege of working in oncology. My thoughts also ventured back to the noisy ward and dusty floor where I had met the first Eugene 10 years before.
Multidimensional Nature of Care
The experiences and circumstances of the two Eugenes could not have been more different. One lived in a part of the world where early death resulting from illness is not uncommon and a life-limiting diagnosis of cancer may not be perceived as devastating. In contrast, the second Eugene experienced his diagnosis as an absolute tragedy. Their stories highlight the complexity and multidimensional nature of cancer care, where individual expectations and societal structures can powerfully influence the patient experience.
Despite these differences, the two Eugenes reminded me that there are fundamental needs universal to all patients and that it is often the small things that make the biggest difference. Accessibility and relational continuity in health care and the proximity and availability of meaningful relationships matter.1,2 Finally, regardless of which Eugene we have the privilege of meeting today, we can improve his journey through cancer by being kind, accessible, and genuine regardless of the ultimate outcome. ■
At the time this article was published in the Journal of Clinical Oncology, Dr. Ang was practicing at Palmerston North Hospital in Palmerston North, New Zealand.
REFERENCES
1. Marcon A, et al: Continuity of care of cancer patients: Analysis of theoretical models and survey tools of continuity of care in people with a cancer diagnosis. Ann Ig 26:380-390, 2014.
2. Slevin ML, et al: Emotional support for cancer patients: What do patients really want? Br J Cancer 74:1275-1279, 1996.
