A Doctor's Deathbed: The Burden of Knowledge

For a physician diagnosed with a rare and aggressive cancer, medical knowledge and connections did not mean he would overcome the odds. But they did shape his perspective on the experience.

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In March 2007, my father, Allan Oseroff, was diagnosed with cholangiocarcinoma, a cancer of the bile duct. Over the next year and a half, he would struggle with his illness: he lost large amounts of weight, his hair, his ability to work and, finally, his life. For most of that time, I ignored the glaring signs of his disease, pushing aside questions of mortality and abandonment. I barely remember his condition until the final six months, when I could no longer look past his worsening symptoms. For my father, an expert on skin cancer and the holder of both a doctorate in applied physics from Harvard and a medical degree from Yale, this ignorance was not an option. One might expect that my father's scientific understanding would have helped him as he navigated his illness. The disturbing fact is that his knowledge and expectations may have contributed to his death.

My father had the unique opportunity to choose his own medical personnel.

Cholangiocarcinoma is a rare disease, occurring in only approximately two out of 100,000 Americans per year. My father's highly developed understanding of physiology alerted him to the early signs of the cancer. A CT scan confirmed his suspicions, and he decided to have immediate surgery. Professional clout and high-quality insurance allowed him to go to the Johns Hopkins Hospital in Baltimore for the operation, known as the Whipple procedure, to remove the tumor. My mother and myself, as well as my older half-siblings, all met in Baltimore to be with my father during the surgery. After an 11-day recovery in the hospital, my father returned home to Buffalo, N.Y. for chemotherapy and radiation treatment. Roswell Park Cancer Institute, where my father worked for 19 years, is one of the top cancer-care facilities in the nation. As a well-respected and, perhaps more important, well-liked member of the staff, my father had the unique opportunity to choose his own medical personnel. This included selecting his oncologist, whom I will call Dr. Judith Parks to protect her privacy and preserve the confidentiality of our conversations.

Before I interviewed her for this article, my only recollection of Dr. Parks had been our embrace at the funeral. Then she had told me in tears how much she had tried to help my father. He survived for 17 months after the diagnosis, about the average time for this sort of cancer. Soon after the funeral, perhaps as part of my grieving, I began to wonder how the extraordinary knowledge my father possessed and the exceptional medical services available to him had resulted in such an ordinary outcome. Given the well-documented inequalities of the American healthcare system, it seems likely that the vast majority of other cholangiocarcinoma patients do not have access to the same quality of care my father received. He was only 63 years old at the time of his diagnosis, young by the standards of the disease. According to his medical records, my dad had no other serious medical problems. While speaking with Dr. Parks, I was struck by a word she had repeated a few times: accepting. She had used this word to describe my father's approach to his illness. As I would discover, this acceptance and the knowledge that informed it may have accelerated his death.

Dr. Parks first used accepting while speaking of the moment when my father found out his cancer had recurred. As I found out while researching the disease after his death, this is an important point in it's trajectory: if the cancer persists after the resection of the tumor, survival rates drop dramatically. After the surgery, which removed a large fraction of my dad's pancreas and small intestine, and the adjuvant therapy, the six months of chemotherapy and radiation treatment intended to prevent recurrence, Dr. Parks had been troubled by a scan. A biopsy revealed that the cancer remained. The results of the biopsy did not seem to shock my father. Dr. Parks sensed he had expected the result:

So that was when we knew. That was the very first time your mother cried.... They knew this was going to happen, sort of at the back of their minds, they knew this was going to happen. Your uncle had cancer, and they had been closely involved.... They just accepted that it could happen.

My father's acceptance may have been the result of a sense of destiny, a preexisting resignation to his younger brother Joel's fate. Separated by only two years in age, they had been especially close growing up, and my dad had taken his death from an unknown, metastatic cancer very hard. It had occurred only two years after the death of their father, which had been preceded by the death of their mother three years earlier. Joel's funeral, in 2001, was the first and only time I remember my father crying.

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Benjamin Oseroff is a writer based in New York City. He focuses on medicine, health, and society.

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