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Edinburgh Neurology Book Club recently discussed When Breath Becomes Air by Paul Kalanithi1 over an evening with dinner at a neurology consultant’s home. Paul was a gifted 36-year-old neurosurgeon in the USA. Diagnosed with stage 4 lung cancer in 2013, he died in 2015. His autobiography explores the themes of life and death.
The book opens with Paul hooked to an intravenous line in his own hospital, reviewing his CT images pre-consultation. They reveal that he is riddled with metastases. His wife Lucy lies by his side on the hospital bed as the reality of terminal cancer dawns on both. This is a moving scene that also evoked a practical lesson. Paul was provided freedom to review his CT because he was a doctor. We have all had experience of treating patients with medical backgrounds but agreed that illness makes people vulnerable, and we should manage colleagues as any other patient.
Paul had presented with back pain and unexplained weight loss. He was declined MRI in favour of spinal X-rays; these were normal and he was discharged. With the benefit of hindsight, we wondered if the presence of a red flag symptom should have prompted further investigation.
Paul had entered medicine because he wanted to better understand life and death. His first hands-on experience surrounding death came through his reaction to the disconcertingly detached relationship between students and cadavers at medical school. This made him focus on the importance of maintaining an appropriate level of attachment to the person behind the disease. We discussed how this might be encouraged in our own practice by, for example, logging personal reflections on difficult interactions and discussing with seniors.
Ten years into Paul’s shining neurosurgical career, his life was brought to a shuddering halt by his diagnosis. His epidermal growth factor receptor (EGFR) mutation was amenable to erlotinib (Tarceva) and his oncologist, Emma, offered: ‘Looking at you, thinking about living ten years is not crazy’. However, the median progression-free survival for erlotinib in metastatic EGFR-TK mutation-positive non-small-cell lung cancer is 13.7 months2. Was Emma’s optimistic estimate, seemingly based on anecdote, aimed at giving him hope? Following his failing response to first-line and second-line treatment 9 months later, Emma maintained: ‘You have five good years left’. Paul passed away weeks later, 22 months after diagnosis. Emma is not alone here: physicians consistently overestimate survival of patients with end-stage cancer.3 It can be difficult to maintain objectivity when, as is often the case in neurology, we are faced with young patients with incurable or debilitating disease. The book illustrates this difficult balance between objectivity and hope for clinicians when making end-of-life decisions. We noted that Emma’s hopeful estimate invigorated Paul to finish residency and we got the feeling that is exactly how he would have wanted to live out his final months. Enabling patients to improve their quality of life is an important aspect of end-of-life care.
Paul questioned his work–life balance. Immediately before the diagnosis, Paul and Lucy’s marriage had reached breaking point because of his career’s demanding nature. This put into perspective our own attempts to climb the medical career ladder and reminded us of the importance of considering family in our decision-making. Only his illness helped reaffirm their bond. The subsequent birth of their daughter gave insight into the impact of family on Paul’s short life: ‘[She] filled a dying man’s days with a sated joy, a joy unknown to me in all my prior years’. We debated moral issues concerning bringing a life into the world knowing a primary caregiver is about to die. However, we agreed that this scenario is unique to any couple and respected Paul and Lucy’s personal decision.
In the epilogue, Lucy narrates Paul’s deterioration to death in a matter-of-fact tone that vividly illustrates the family’s struggle with his death.
The book is powerfully moving and educates about life and death decisions from the perspective of both doctor and patient. It provided practical lessons on patient autonomy and managing patient expectations in the face of terminal illness and allows exploration of our own moral values as doctors.
Acknowledgements The authors acknowledge contribution from Richard Davenport, Peter Fernandes, Ingrid Hoeritzauer, Graeme Mackenzie, Fiona Moreton, Timothy Soane, Briony Waddell, Tim Wilkinson and Charis Wong.
Contributors GKM and DJL contributed equally to this work and are joint first authors. Both made substantial contributions to the conception of the work, drafting the work and revising it, and made final approval of the version to be published. Both are in agreement to be accountable for all aspects of the work. A group of neurology registrars and a consultant from Western General Hospital in Edinburgh discussed the book and gave input into the drafting of the manuscript.
Competing interests None declared.
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