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 While she and the rest of the community around my father may have not withdrawn, the news of the cancer's recurrence was certainly a suggestion of death.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.