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.
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.
My dad did not approach his illness in a fatalistic way. He was deeply involved in his treatment: he read the medical literature on it, grew his tumor in rats at Roswell Park, and sponsored stem cell research on his cancer in a national lab. On one occasion, he even took control of his treatment from Dr. Park, choosing the oral version of a drug over its intravenous alternative.
As she reminded my father, there are always outliers.
My father's expectation and acceptance of his cancer's recurrence appear to have been grounded in objective reasoning. When he was diagnosed, the cancer had spread to his lymph nodes, putting his odds at avoiding recurrence at only 35 percent. It is unclear to me where my father would have based any hope of rebuilding his body. For many people, religion might be the source of such optimism. Though he had been raised as an orthodox Jew, my dad had adopted a secular, though culturally-Jewish world view. While near death, he had described his religious attitudes to me by saying, "I was always agnostic, but now I am verging on atheist."
My father might also have found comfort in statistics. During his recovery from the surgery in Buffalo, a long time friend of his from California named Sarah visited. Although in her late sixties and very visibly affected by multiple sclerosis, Sarah spoke with my father of bell curves. As she reminded my father, there are always outliers.
This use of statistical metaphors would have had special appeal for my father. I remember walking into my dad's home office as a child and seeing multiple computer screens filled to their edges with charts and data. Although he was very successful in obtaining research funding, including many highly coveted National Institutes of Health grants, my father was a notorious procrastinator. He was often two or three hours late for afternoon meetings, let alone those in the morning. This was due to his habit of working in bed late into the night, stopping long after my mother had given up admonishing him and had fallen asleep. I once asked my father about this lateness and, at first, he deemed it a habit he had picked up from his mother. Thinking more, he explained how he had always viewed his existence as fleeting and uncertain; why worry about a meeting when life may end moments before?
Despite this apparent nonchalance, my dad approached his work with an intense scientific rigor. This mimicked his attitude toward his disease. Given his proclivity for analyzing data, he certainly understood the true meaning of a bell curve: in a perfectly shaped bell curve, for every extraordinarily long-lived survivor, there is a tragically early death. As I listened in to him and Sarah speaking, it was difficult to not hear the uneasiness of his professed optimism.
He was deeply involved in his treatment: he read the medical literature on it, grew his tumor in rats at Roswell Park, and sponsored stem cell research on his cancer in a national lab.
Beyond statistics, ignorance can also function as a basis for hope. Many patients, and those around them, opt for an uninformed optimism by leaving medical decisions to their physicians. I certainly followed this route; it was not till many months after his death that I knew more than the name of the disease. For my father, a translational researcher specializing in oncology, this was not an easily available option. This scientific knowledge had allowed my dad to devise new technologies to fight skin cancer. Yet during his own illness, this understanding led to anticipations of recurrence and, given his awareness of the biomedical literature, probably death. These expectations may explain his average outcome.
Since Harvard anesthesiologist Henry Beecher's studies in the 1950s, it has been clear that placebos, apparently innocuous procedures, can have demonstrable effects on human physiology. Despite the subsequent discovery of endorphins and other advances in our biological understanding, locating the specific mechanisms behind the response has proved difficult. This is especially true in areas besides analgesia, or pain relief. Certain variables have been identified as triggering the placebo effect. They have expanded the conception of placebos from a patient's finding succor in sugar pills to include factors like cultural attitudes toward disease, the branding of pharmaceuticals, and a patient's confidence in their doctor. For example, in one study on coronary heart disease, a high adherence rate to medication was linked to better survival, regardless of whether the pill was active or inert. These psychosocial variables can have therapeutic effects, or they can trigger suffering and even death.
Derived from the Latin verb nocere, to hurt, the nocebo (literally meaning: I shall hurt) stands as the noxious counterpart to the placebo, which means, I shall please. Just as confidence in a doctor's ability can bring therapeutic benefits, anxiety, fear and a strained marital relationship have all have been shown to negatively affect health. Recent studies have demonstrated, for example, that people experience increased pain when told to expect it, such as with the interruption of morphine. The most extreme example of the nocebo effect might be the phenomenon of "voodoo death." Investigated by Harvard physiologist Walter Bradford Cannon in the 1940s, these sudden deaths occurred among people from South America to New Zealand who had not suffered any apparent trauma or had any underlying physiological condition. Cannon found that the pointing of a bone was sometimes all it took to kill a seemingly healthy individual.
My father's illness was certainly not a rapid one; his decline can be measured in months, not days or hours. Yet after the decision was made to forgo further chemotherapy, sixteen months after the original diagnosis, my father slipped quickly downhill, even more than might be expected. Despite multiple rounds of chemotherapy and radiation that had led to depression, weight loss, nausea, and debilitating neuropathy in his feet, the cancer had continued to spread. While he could have pushed on with treatment, perhaps achieving some spectacular result, my father accepted that death was the conclusion; chemotherapy would only prolong the wait. I asked Dr. Parks about this turning point in his treatment. She described a conversation that perfectly fit my image of my dad as a gentle, quiet being:
[I] said I don't think we should do anymore chemotherapy. And he said, "Why not?" And I said, "Well, we tried some of the best drugs, we've given you everything that we think is likely to work....So at this point, if you are feeling weaker and can't do a whole lot...I don't want to put you through toxicities...it would make your quality of life worse... So he just shook his head and said, "O.K., I understand," and that was it.
It was after this conversation in late September 2008 that I received a phone call from my mother, asking me if I would like to come home and be with my father for a few days. In what became a stream of visits, my siblings, my uncles and aunts, and close friends of my father all arrived in Buffalo to say their good byes. I came home almost every weekend, commuting from Princeton, where my father had wanted me to stay enrolled. In the early morning of October 16, 2008, only three weeks after the decision to stop cancer treatment, my father died at home.
He just shook his head and said, "O.K., I understand," and that was it.
There are clear similarities between the deaths detailed in Cannon's work and my father's last weeks. In describing the "voodoo deaths" in Australia, Cannon refers to two movements of society in the face of death. The first is contraction, as friends and relatives withdraw from the "doomed man," suggesting they sense the inevitability of his death; their absence then imparts that sense to the victim. My mother, also a physician, never left my father's side, providing care and affection throughout his illness. While she and the rest of the community around my father may have not withdrawn, the news of the cancer's recurrence was certainly a suggestion of death.
Cannon describes the second movement as a "return" in which the victim is subject to a "ritual of mourning." The stream of tear-filled visits, provoked by the confirmation of a nearing death, were an effort by those close to my father, me included, to make peace with him before he died. They took place in the second-floor bedroom where my father had been spending increasing amounts of time. Through these visits at the side of his soon-to-be death bed, it was as if we placed him, like the Northern Australian aborigines Cannon investigated, "in his proper position...of the dead."
There are other, less dramatic ways, that the nocebo effect could have played a role in my father's illness. Perhaps his understanding of disease and negative expectations only exacerbated the neuropathy in his feet or the anxiety for which he had been treated for decades. The recognition that this understanding of his disease could have had any negative effect on his health has far-ranging consequences. The potential danger of the nocebo effect is relevant to debates on informed consent law, patient autonomy as well as medical care for health professionals.
Recent discussions surrounding direct patient access to laboratory results highlight the immediacy of these concerns. An increasing number of healthcare systems provide patients with online access to their test results without the benefit of their physician's interpretation. The volume of medical information available today provides as much of an opportunity for unnecessary anxiety as it does for a patient to practice due diligence. There is an importance to limits on paternalism in medicine. At the same time, the nocebo effect underlines the clear risk of holding on to this medical knowledge.
The volume of medical information available today provides as much of an opportunity for unnecessary anxiety as it does for a patient to practice due diligence.
I now find myself personally weighing those consequences. Recently, I decided to follow in my father's footsteps and pursue a career in medicine. The potential burden of medical knowledge weighs heavy. While Allan's acceptance may have worsened his outcome, I also remember how it brought us together. I had always felt a special connection with my father. In the conversations we had in the months before his death, it only grew stronger. It was in these moments that I found out about his difficult childhood, lonely college experience and passion for caring for others. We even participated in a Storycorps interview, in which I asked him a list of questions on topics ranging from his own decision to go to medical school to "where do you see me in 15 years?"
My father's brother Joel died only a few months after his cancer was discovered. Until the day he died, Joel believed he would survive. Not only did this belief apparently not prolong his life, it also left his family and friends with many difficult, unanswered questions. My dad's acceptance of his disease's biology and his own mortality may have contributed to his average survival. It also provided me with the opportunity to understand him as a person rather than just as a parent. As I consider following in his footsteps, I am comforted by the realization that with this knowledge one can know how to let go.