Given the challenges of modern cancer care, Paul Kalanithi's memoir may impact your life like no other. Each time I reread When Breath Becomes Air, I marvel at the treasure left by a dying physician, replete with imagery that grabbed me and never let go. The neurosurgeon's mission, according to the epilogue written by his internist wife, was to help people face their mortality. My mission is to draw attention to the wise physician's discussion of clinicians' duty to patients and highlight some provocative insights about guiding patients through their survivorship.
Thirty-five-year-old Kalanithi was in his sixth year of fellowship when he was diagnosed with advanced lung cancer. He died less than two years later, leaving behind his widow to raise their 8-month-old daughter and to finish his nearly completed manuscript.
Kalanithi brought to this book a singular combination of expertise and personal experience, all colored by his fascination with moral philosophy. His academic background included master's degrees in literature and in the philosophy of science and medicine. His work as a brain surgeon included wrestling with real-life decisions about what kind of life is worth living. His survivorship included a Tarceva-induced reprieve and a bruising course of chemo.
As a lover of metaphor, I was taken by how he'd pictured doctors' work as akin to connecting two pieces of railroad track, thus enabling patients to make a smooth journey. As for clinicians' duty to guide that journey, I've long shared his belief that doctors have both biological and philosophical responsibilities. While in practice I, too, viewed keeping up-to-date and learning what mattered to patients as moral requirements. Like Kalanithi, I searched for words that transformed patients' overwhelming decisions into difficult but understandable ones and tried to focus on meaningful goals of treatment, not just medical goals. In retrospect, I would have benefitted from seeing informed consent not as a legal chore to get through quickly but as an opportunity to forge a covenant: “Here we are together, and here are the ways through—I promise to guide you, as best as I can, to the other side.”
The path to the other side looks a lot different when you are the patient. The first time I read his post-diagnosis thoughts and feelings, I almost checked the back of my nightstand drawer to see if magically he'd accessed the yellowed pages of my diary. With precocious and unmatched clarity, Kalanithi captured how disorienting and confusing and unfamiliar everything felt to me. How I couldn't plan. How the same statistics that had empowered my work as a physician had become useless to me as a patient. How existential questions, now urgent, forced me to decide what I believed about God and about my purpose.
I appreciated how Kalanithi kept reiterating the importance of meeting patients where they are, something worth repeating in a world where technology keeps remodeling the doctor visit. Today, patients' pivotal moments occur in physicians' offices and hospitals, creating an illusion, if only subliminal, that their survivorship takes place on the physicians' turf. Today, patients' biologic issues necessarily dominate the visit, since proper tests and treatments are needed to optimize patients' care—and only physicians can prescribe them. Today, many patients hide their disorientation, dislocation, and existential angst for fear of distracting or dissuading their physicians from prescribing treatments that give them hope.
The obligation to meet patients where they are emotionally and psychologically demands time, skill, and compassion. The return on your investment is a healing bond, one vital to fulfilling the duty to guide patients and take them as far as you can. Kalanithi's few stories about his oncologist reminded me of the many times my oncologist guided me well, such as by responding to my yes-no question about the curability of my cancer with a redirect to its treatability. Similarly, Kalanithi's oncologist, with all due respect for his knowledge base and autonomy, rebuffed his request to talk about Kaplan-Meier curves with this directive: “Find your values.” Sage advice, since values lie at the heart of every decision patients make.
What if patients can't seem to find their values? Patients may struggle if values keep changing. Or if temporary losses impact defining aspects of a patient's identity and threaten that patient's sense of self. When Kalanithi had no hope of ever returning to the OR, his oncologist insisted on tailoring therapy to preserve his ability to operate. The message was that if patients are too compromised to see possibility or to feel hope of holding on to their old identity, oncologists have a duty to take stewardship of that identity for as long as there is hope of preserving it.
For me, an image came to mind of a clinician carrying a patient across a rough patch of track. That reflected Kalanithi's assertion: “...the physician's duty is not to stave off death or return patients to their old lives, but to take into our arms a patient and family whose lives have disintegrated and work until they can stand back up and face, and make sense of, their own existence.”
Clinicians assume a burdensome mantle of responsibility by investing fully in the medical, philosophical, and emotional issues of patients' lives. If nothing else, making treatment recommendations based on judgments about which lives are worth saving demands an unattainable prognostic ability. Unattainable. How do clinicians live with that? “The secret is to know that the deck is stacked...and yet [you] still struggle to win for your patients. You can't ever reach perfection, but you can believe in an asymptote toward which you are ceaselessly striving.”
Kalanithi's legacy lives on in me, ceaselessly striving to find words that help patients get good care and live as fully as possible. May his legacy live on in you, ceaselessly striving to meet patients where they are and bring them as far as you can.
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