“It occurred to me that my relationship with statistics changed as soon as I became one” (Kalanithi 99).
Chief neurosurgery resident Paul Kalanithi spins the “urgency of racing against time” in his memoir When Breath Becomes Air (154). Through his novel, the reader is pulled into the world of a dying man who “confront[s] death—examine[s] it, wrestle[s] with it, accept[s] it–as a physician and a patient” (154). Diagnosed with end-stage lung cancer at 36 years old, Kalanithi soon leaves behind his wife and months-old daughter, succumbing to the disease before graduating medical residency, and failing to accomplish the ambitious academic and personal projects he sought after.
Yet, by giving up his dreams, Kalanithi finds passion and purpose in the form of his memoir. The diagnosis of cancer peels back each layer of an individual’s life, making them despairingly question the very system and gears of reasoning that had since pushed them forward. In the same way, however, the onset of cancer can be a reset. Morbidly, an individual with cancer is provided the “opportunity to re-evaluate one’s life, to take stock and live life to the fullest” (Vos 886). With his own triumph in writing, Kalanithi promptly demonstrates how an individual can rebel against, if not the malady itself, the haze of disillusionment cancer brings. Using his own lost potential and suffering, Kalanithi shapes a medium in which he “help[s] people understand death and face their mortality” (154). As a result, he places into conversation the question of how patient-oriented cancer treatment enables cancer patients to face their fragile mortality within cancer treatment and the ensuing life choices they must make.
“Why was I so authoritative in a surgeon’s coat but so meek in a patient's gown?” (Kalanithi 13).
In the face of terminal illness, patient-oriented care offers individuals a crucial sense of agency, allowing them to shape their remaining time with intention. Author and physician Siddhartha Mukherjee briefly illustrates the dangers of a system that neglects patient autonomy by describing the 1970s cancer wards. Patients, he writes, “lived by the regulations” (198). Stripped of any sort of self–sovereignty in the dystopian–like treatment center, patients were prevented any agency in even living—“confined in the wards[, prevented] from jumping off the banisters and committing suicide” (Mukherjee 197). This absence of choice, he argues, destabilized their ability to confront mortality, reinforcing the need for a care model that prioritizes the individual’s experience and decisions.
Kim Norris, founder of the Lung Cancer Foundation of America, expands upon this necessity by advocating for “participatory medicine,” in which patients actively engage in their treatment decisions. She argues that an informed patient, equipped to question and challenge their doctor, is better positioned to navigate their illness with purpose (Norris 3). Her addition of “participatory medicine” grants a patient the agency to make decisions for themself—the genuine opportunity to make the most of their lives in spite of their looming disease.
Dr. Teresa Hagan further refines this concept, arguing that true patient autonomy requires “self-advocacy,” or the ability to navigate one’s care independently. She emphasizes the role of healthcare providers in fostering this ability through palliative care, which supports both physical and emotional well-being (Hagan 2348). This approach helps patients develop the resilience needed to make informed decisions, ensuring that their remaining time is spent on their own terms.
People construct “ordinary meanings [in] everyday life” akin to “walls of a house, to protect us” (Vos 885). The existential storm of a terminal diagnosis may collapse the once meaningful walls, stripping away constants that once provided security. Yet, as Kalanithi’s memoir and the perspectives of Mukherjee, Norris, and Hagan illustrate, the collapse also reveals the profound possibilities of choice. Patients, empowered with autonomy and supported by patient-oriented care, are able to rebuild new walls “[beyond] these ordinary meanings” (Vos 894).
Ultimately, patient-oriented care offers more than medical treatment—it provides a means for patients to define their own narratives. By integrating participatory medicine and self-advocacy, individuals facing terminal illness can regain agency, find meaning, and shape their final chapters with dignity and purpose.
Works Cited
Hagan, Teresa. Journal of Advanced Nursing, vol. 69, no. 10, 13 Oct. 2013, pp. 2348–2359,
https://doi.org/10.1111/jan.12084.
Kalanithi, Paul. When Breath Becomes Air. Random House, 2016.
Mukherjee, Siddhartha. The Emperor of All Maladies: A Biography of Cancer. Scribner, 2010.
Norris, Kim. “Lung cancer patient advocacy and participatory medicine.” Genome medicine vol.
6,1 7. 30 Jan. 2014, doi:10.1186/gm515
Vos, Joël. “Meaning and Existential Givens in the Lives of Cancer Patients: A Philosophical Perspective on Psycho-Oncology.” Palliative and Supportive Care 13.4 (2015): 885–900. Web.