When he died neurosurgeon Paul Kalanithi left behind the story of his cancer

On March 9th, 2015, two years after learning he had metastatic lung cancer, Dr Paul Kalanithi died at the age of 37. He was a neurosurgeon at Stanford University, and left behind his wife, Dr Lucy Kalanithi, and their eight-month-old daughter, Cady. He also left behind the guts of the book he was writing about his cancer.

Lucy finished the book, When Breath Becomes Air, with a beautiful epilogue about what happened after Paul wrote what would be his final pages. She has since shepherded it through the publication process and it became a New York Times bestseller almost instantly.

“During a time of grief for our family, it’s really a consolation to see Paul’s work and dream come to be, so it’s great and overwhelming, terrible and wonderful,” says Lucy.

“I think it indicates something about a cultural conversation that’s happening about facing mortality and a conversation that people seem to be hungry to have. I think the response to the book indicates that. These questions and conversations about mortality and meaning; obviously people want to be having them and the book is a catalyst for doing so.”

Fascination

In the book, Paul describes his own fascination with death and mortality. It was something he studied and tried to grapple with in literature as an English student, and then as a medical student and neurosurgical resident.

Although he treated patients with terminal conditions as a doctor, facing his own terminal diagnosis meant he explored the idea of mortality from a new angle.

“It was such an intense and fiery experience that putting words on it helped him to cope. He felt a real purpose in describing being up close to one’s mortality and he understood that to be a universal experience, that we’ll all face illness, death and bereavement, and we’re all trying to make sense of our time here,” says Lucy.

“The process was intrinsically meaningful to Paul while at the same time being utterly disorienting and he certainly did have a lot of existential and physical pain, but I think the idea of striving to grapple with it was meaningful to him.

“It felt singular at the time but then the response to the book, and the fact that people are reading it and talking about it, means that’s really not singular. In the way a singular story can illuminate something universal, it’s not singular.”

The couple had always planned to have a baby around the time Paul finished his residency, which was the year he received his diagnosis. Although Lucy says it seemed “a bit crazy” to continue discussing it while he was ill, they ultimately decided to have a child.

In the book he explains that Lucy asks if having a child would make his death more painful, and he replies, “Wouldn’t it be great if it did?” They agreed that life wasn’t about avoiding suffering, but creating meaning, and that having a child would be both meaningful and important for them both.

“It’s something we all naturally understand but it’s crystallised in that sentence. Choosing to have children is an example. Pursuing a career that is meaningful but arduous or involved is an example. Even travel is an example because when you travel you’re taking a risk and getting outside your comfort zone, but you’re doing it often in order to explore, learn and build meaning in your life.

“I think it’s an instinct most people have. Life isn’t about avoiding suffering, it’s about creating meaning.

“But I think in that moment, it was something that we crystallised and it gave us a foundation for understanding how we make decisions as we were living and as Paul was dying,” she says.

At no point did either of them ask why them in relation to Paul’s diagnosis, something Lucy feels grateful for and puts down to them both having trained as doctors.

“We had seen many of our own patients die or face extreme challenges for themselves and their families. This helped us understand that this does happen, that people die and really difficult circumstances like ours can occur, so we did have much more of a sense of it being our turn, or it was happening to us.

“Paul asks, ‘Why not me?’ It’s a bit cheeky but it’s a good answer to that question, because that’s a whole other layer of pain to feel angry and feel something is unfair.

“It’s another version of suffering and we didn’t have to suffer that, which I think was helpful.”

Patient experience

Caring for Paul and experiencing the healthcare system as family of a patient rather than as an internist at Stanford, has made Lucy see the system differently, she says.

“It’s brought up questions of what are we really getting for our effort and our money in healthcare and what are we really doing to help each other live and die well. There are questions of quality and costs and then there are these bigger questions of how does our healthcare help us live out our deepest values.

“How do choices we make affect our families and societies and lives?”

The book, Lucy feels, is a good contribution to conversations around these questions, and it’s something she hopes to continue talking about and working around in her own career in the future.

“The book is a reflection on mortality and meaning, and the experience of facing mortality. It’s a call for people to seek and live their deepest values and find meaning, either in spite of or because we’re all mortal.

“I think that’s what seems to be happening and Paul would be really delighted by that and really proud to have contributed something to the literature looking at those big questions.

“I think it has crystallised even more, in a very visceral way, how important those questions are so that’s the thing I look forward to continuing to consider, and to make a contribution around those things.”