When Breath Becomes Air, Paul Kalanithi

I saw my dad in Paul Kalanithi as the latter grappled with the inevitable approach of his own death from cancer. There was a morbid irony to both of their tales: the dramatic reversal of a neurosurgeon who became the patient of a disease that he had once combatted in his own patients (Kalanithi), and the immigrant CPA who accelerated his deterioration by refusing to be a patient in the very practice of medicine that he wanted his daughters to join (my dad). For both, cancer ate away at not only their physical constitution, but also their ambitions, causing them to fall short of the success of graduating from residency (Kalanithi) and finishing the next tax season to reach retirement at age 65 (my dad). Cancer represented all of the memories that would never be fulfilled, a lifetime of watching his daughter grow up (Kalanithi) and attendance at milestones of life for his daughters like graduations and marriages (my dad).

But what also caught my attention were those elements of Kalnithi’s experience that were absent in my dad’s.

One was the eventual peace that Kalanithi reached with his coming death, which never reached my dad. Through the moment of his death, my dad refused to acknowledge the possibility that he was dying, not in the manner of a fighter that is popularized through media, but in a near refusal of the recognition that he had cancer. It is hard to ask a dying man why he does not believe he is dying, but I suspect that it was partly due to the set of beliefs and superstitions about healing and disease that my dad brought with him when he immigrated to the U.S., which was markedly at odds with the Western tradition of medicine. My dad clung to a stubborn belief in natural remedies, which drove his fear of and refusal to receive hospital care. When his condition finally deteriorated to the point of overcoming his resistance to going to the hospital, he encountered a healthcare system that did not try to understand his beliefs but attempted to force treatments upon him that he did not want.

The second was the attentive, centralized care embodied in and channeled through Kalanithi’s doctor, “Emma”. Emma was everything my family could have longed for in a doctor for my dad at the end of his life. My family’s pain resulted not from a poor experience with any one doctor, but rather the inconsistencies and fragmentation that arose when these skilled individuals were expected to provide a holistic care experience. What we witnessed were dozens upon dozens of doctors, all from different specialties, all recommending different treatments for my dad, and no single doctor to act as a point person to help us weigh these professional opinions, filter out the noise, and select the best options for my dad. Moreover, no one acknowledged that there was bound to be an increasing number of things wrong with my dad’s body with the slow decay into death, and we should instead turn our attention to more holistic conversations about what my dad wanted for the end of his life.

These differences are neither an outcry of the better care Kalanithi had at the end of life, nor a protest of the beautiful autobiography he has shared with the world. Rather, these differences highlight the responsibilities of the end of life healthcare system to provide this quality of care to every patient that is dying, regardless of their occupation, background, or beliefs. Though death may be the outcome for all patients, there are disparate possibilities for end of life patient and family experiences that arise not from the diagnosis of a serious illness but a holistic understanding of them as people. Without change, the end of life healthcare system as it stands today has the potential to marginalize populations in our diverse country and negatively shape how people experience dying in America.