Zosia Chustecka

June 23, 2016

When it was published early this year, When Breath Becomes Air by Paul Kalanithi, MD, a neurosurgeon at Stanford University in California, immediately rose to number one on the New York Times bestseller list and stayed there for 12 weeks. It has since been translated in 30 languages and has become an international bestseller.

It is obviously resonating with the public, but it has a particular resonance for a medical audience, as it covers in some depth what it means to be a doctor. But it also has a special resonance for oncologists, as the author also describes his shock diagnosis, at 36 years of age, of metastatic lung cancer, and the transition from doctor to a patient facing his mortality.

When Breath Becomes Air

The book was discussed at a special session during the recent American Society of Clinical Oncology (ASCO) 2016 Annual Meeting. Teresa Gilewski, MD, from the Memorial Sloan Kettering Cancer Center in New York City, talked to the author's widow, Lucy Kalanithi, MD, clinical assistant professor at Stanford. She completed the unfinished manuscript and added an epilogue.

Many in the audience praised the book and were recommending it to colleagues and to trainees. "He put into words what many of us feel as doctors," one oncologist commented in the discussion period.

In the first part of the book, Paul discusses in some detail the responsibilities of being a doctor, noted Dr Gilewski, and she highlighted several quotes, as follows:

"[Doctors] trespass into sacred spheres.... They see people at their most vulnerable, at their most scared, their most private."

He also writes about the calling of medicine and the struggle involved. "We had assumed an onerous yoke, that of mortal responsibility. Our patient's lives...may be in our hands, yet death always wins."

"The secret is to know that the deck is stacked, that you will lose, that your hands or judgment will slip, and yet still struggle to win for your patients."

Yet he also worried about being the stereotypical doctor, as described by Tolstoy, "focusing on rote treatment of disease and utterly missing the larger human significance."

Midway, the tone of the book changes. In his last year of neurosurgery residency, with graduation in sight, he is diagnosed with metastatic lung cancer already spread to liver and bone.

He writes poignantly about being admitted into the hospital, putting on the blue gown and plastic bracelet and then sitting in the room where he himself had seen patients and explained terminal disease just days ago. "A young nurse poked her head in and said the doctor will be in soon...and with that the future I had imagined, the one just about to be realized, the culmination of decades of striving, evaporated."

Talking at the meeting, Lucy emphasized this point. She said she hadn't realized until then how much we all focus on the future, and how "especially in medicine, you have this trajectory ahead of you...and then all that evaporates."

She also said that she was thrilled to be at ASCO and talking to oncologists, because she said that "Paul's oncologist brought him back to life."

There is a large section in the book devoted to the oncologist who treated Paul, whom he refers to as Emma Hayward (not her real name).

From the very first appointment, she refused to address the "how long" question, and focused on living and on what he felt was important in his life. Lucy said that she cannot overstate the impact that this oncologist had on their life — "administering therapy was the least of the things that she did."

In his book, Paul writes that he "learnt to live in a different way, seeing death as an imposing itinerant visitor but knowing that even if I'm dying, until I actually die, I am still living."

Initial treatment was with erlotinib (Tarceva), on which he did well for nearly a year. Quality of life was good, and Paul went back to work as a neurosurgeon and completed his residency.

During that time, Paul and Lucy also decided to try for a baby; it had always been their plan to do so when his residency was finished, Lucy said, and he had banked sperm before he started erlotinib treatment.

However, after 11 months on erlotinib, the cancer progressed.

Lucy recalled that moment. "His nurse practitioner said I really hoped that you were the guy, the one who had 7 years or 10 years on [erlotinib]...but you are not that guy, and I am really sorry."

"The way she said it was really so kind," said Lucy. "She was wishing it was the case, but it wasn't and it was such an expression of empathy that I remember feeling really connected to her in the moment."

The next treatment was chemotherapy with bevacizumab (Avastin), but after three cycles Paul developed severe toxicity that sent him to the intensive care unit. That really knocked him sideways, said Lucy, and he became physically debilitated. After his body recovered somewhat, he received maintenance treatment with erlotinib plus bevacizumab, and then afatinib with cetuximab.

But the disease was progressing.

Here again the oncologist was so very helpful, Lucy said. She likened the doctor's role at this point to being like that of a shepherd, "where we are helping people to make sense of their illnesses."

Paul also discussed this in his book, when writing about neurosurgery. "Technical excellence was not enough. As a resident my highest ideal was not saving lives — everyone dies eventually — but guiding a patient or family to an understanding of death or illness."

"This really struck me," commented Dr Gilewski at the meeting. "Many of us are striving towards cure, but here he makes the point that's that is only part of it."

No longer able to work, Paul turned his energy to writing a book.

He had already published an essay in the New York Times to some acclaim, and had offers of a book deal. In a way, he was returning to his first love, as before deciding to become a doctor he had wanted to be a writer, and had a masters in both English literature and the philosophy of science and medicine.

In his book, Paul writes about how important literature had been to him when he was younger. He hadn't had the time to read much during his residency, with its long hours in the operating room, but now he returned.

"I hadn't expected the prospect of facing my own mortality to be so disorientating, so dislocating...lost in a featureless wasteland of my own mortality, and finding no traction in the realms of scientific studies, intracellular molecular pathways, and endless curves of survival statistics, I began reading literature again."

He says literature "brought him back to life during this time" and he would repeat every morning seven words from Samuel Beckett: "I can't go on. I'll go on."

There was also another new project under development: Lucy was expecting.

The decision to have a baby "raised a lot of eyebrows," Lucy said, and she emphasized that "we didn't have a baby to spite cancer." She also remarked that there was a balance between Paul slowly dying and the baby slowly growing, and at the same time his book also growing — it was all mixed in together and "that added to the pain of it, but also added to the meaning of it."

Paul writes lovingly in the book about his daughter, Elizabeth Arcadia, whom he nicknamed Cady, and Lucy said "one of my prized possessions is this piece of writing for her."

"When you come to one of the many moments in your life when you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man's life with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more, but rests satisfied. "

"In this time, right now, that is an enormous thing."

Lucy elaborated on that feeling of focusing on the moment. Previously time had been linear, but now it had turned into a space.

Oncologists' Questions

At the meeting, during the discussion period, a medical oncologist in the audience said that one part of the book had shocked her. When Paul first met with his oncologist, she refused to discuss prognosis and survival estimates — and it seemed that question was asked repeatedly, and each time, she refused to give a number. "At that moment, I thought, aren't we supposed to do that?" the questioner said. Isn't that part of the job, to give a patient who is asking some idea of what their prognosis may be?

 
My relationship with statistics changed as soon as I became one.
 

In the reading the book, this questioner said she got the impression that Paul had been glad that his oncologist denied him a number, even though he didn't say so explicitly. What he did write was: "It occurred to me that my relationship with statistics changed as soon as I became one."

In answer to the question, Lucy again emphasized what the oncologist did do, rather than what she didn't do.

"The other thing she did ended up being so important," Lucy said. She wanted to know about his interests, what was important to him, and "this emphasis on his living rather than his dying was her greatest gift to him."

Meanwhile, they could look up survival statistics and Kaplan–Meier curves themselves. "We could look it up and we knew how it applied to us," Lucy said. She noted some recent research suggesting that about half of patients diagnosed with metastatic cancer are not aware that the diagnosis is terminal, but pointed out that with them both being doctors, "we did not have illusions." She also said that they were aware once Paul has progressed on erlotinib that they were looking at about a year and, indeed, that was how long he lived.

But it was a constant process of adapting to events as they were unfolding, because "even when you are dying, you don't know when."

Another medical oncologist in the audience brought up this same point, and suggested that the fact that both Lucy and Paul were physicians likely influenced the way that the issue of prognosis was handled. It would have to be spelled out a bit more for other patients, she suggested, and Lucy agreed, adding that when Paul's parents were in the room and discussing the future, then their oncologist was quite firm in framing their expectations.

She was also firm in focusing on what was important to Paul at each point throughout his illness, but that changed as the disease progressed. As he wrote: "The tricky part of Illness is that, as you go through it, your values are constantly changing.... Death may be a one-time event, but living with a terminal illness is a process."

The way that the oncologist handled the prognosis question was also discussed in an article published earlier this year in the New England Journal of Medicine (2016;374:587-590).

At the meeting, one last question came from an oncologist from the Memorial Sloan Kettering Cancer Center, where the book was read in their journal club, and is now on the recommended reading list for trainees. The question was about the delayed diagnosis. Doctors are notoriously reluctant to go to the doctor, she pointed out. In the book, Paul notes that he had back pain and weight loss for a few months before going to the doctor; at the meeting, Lucy said he had symptoms for about 5 months, but was so busy with residency and long operating times that it was hard to find the time to schedule an appointment.

But, the questioner asked, did he suspect that he was seriously ill and didn't want to know?

Lucy said that this was something that they had not discussed. She suspects that in Paul's case, by the time he was having symptoms, the cancer was already metastatic, and she doubts that finding it a bit earlier would have made much difference to the survival, "so we didn't beat ourselves up about it."

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