How When Breath Becomes Air Is Helping the Public—and Physicians—Confront Their Mortality

A Conversation With Lucy Kalanithi, MD, FACP


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Lucy Kalanithi, MD, FACP

Lucy Kalanithi, MD, FACP

It should not come as a surprise to anyone who has read Dr. Paul Kalanithi’s brilliant—and unforgettable—memoir, When Breath Becomes Air (Random House, 2016), that nearly a year after publication, it remains on The New York Times best-seller list, its popularity only increasing with time. Written while his was dying at age 37 of non–small cell epidermal growth factor receptor (EGFR)-positive lung cancer, the book chronicles Dr. ­Kalanithi’s transformation from a promising career in neurosurgery at Stanford University to a patient coming to terms with his mortality and finding deep satisfaction and meaning in his life. Even as the chemotherapy treatments stopped working and his health declined, Dr. Kalanithi was so determined to finish When Breath Becomes Air, he wore silver-threaded gloves as he typed the words into his laptop to protect his fingers wracked by painful fissures caused by his chemotherapy treatments.

Despite his best efforts to complete the manuscript and see the book through to publication, Dr. ­Kalanithi died on March 9, 2015. His wife, Lucy Kalanithi, MD, FACP, wrote the book’s epilogue describing Paul Kalanithi’s final days, which were consumed by sadness but never pity, and shepherded the book to publication. “Even while terminally ill,” wrote Dr. Lucy Kalanithi, “Paul was fully alive; despite physical collapse, he remained vigorous, open, full of hope not for an unlikely cure, but for days that were full of purpose and meaning.… Writing this book was a chance for this courageous seer to be a sayer, to teach us to face death with integrity.”

For the past year, Dr. Kalanithi, Clinical Assistant Professor of Medicine in the Division of General Medical Disciplines at Stanford University School of Medicine, has been on a nationwide tour promoting the book. When Breath Becomes Air was selected for the ASCO Book Club at the 2016 Annual Meeting, at which Dr. Kalanithi read excerpts from the book and took questions from the audience. She also led a discussion of the book at the 2016 Palliative Care in Oncology Symposium and delivered the keynote presentation at JADPRO Live at APSHO, a conference for advanced practitioners, on November 4, 2016, in Washington, DC.

The ASCO Post talked with Dr. ­Kalanithi about the impact When Breath Becomes Air is having on both physicians and the general public and on her own life and career.

When the Physician Becomes the Patient

Why do you think this book about mortality is resonating with a large general audience?

I’m so proud of Paul. His writing seems to be resonating with both lay and physician audiences. I think people are interested in talking about mortality and meaning in general, including the question of how we care for each other during illness and death. Death, like a lot of other taboo subjects, including marital difficulties, chronic illness, and debility, is omnipresent and hidden at the same time.

I think it’s also because his book isn’t just about dying. It’s about having meaning in one’s life and struggling to find that meaning. And, of course, people are naturally curious about a young person who is facing his mortality or a physician who is facing his mortality. As I’ve done the book tour, it’s given me a chance to talk with physicians about the physician-patient relationship from the other side and the experience of recognizing ourselves in the physician who becomes the patient or caregiver.

Balancing Quality Over Quantity of Life

Would you agree that one of the crucial messages in the book is to live the best life you can for as long as you can no matter your situation?

Yes, I would. During his life, Paul sought to understand the human condition through literature, philosophy, and, finally, practicing medicine. He drew on all of that to cope once he became a terminally ill patient. And, Paul tells the story of how his oncologist encouraged him to find his values and make his life meaningful to help him live well, even though she couldn’t save his life. She worked with him to tailor his chemotherapy treatments so they wouldn’t interfere with his ability to practice neurosurgery and to maintain quality of life as he became sicker. She brought him back to life while he was dying, which is why he loved her so much.

Why Not Me?

Paul wrote that he choose a career in neurosurgery to pursue death and see it eye to eye unblinking. Did his education and training in medicine impact the way he thought about his own mortality after his cancer diagnosis? And did it help him live as well as he did while still pursuing his career and later in writing his memoir?

Yes, in several ways. Paul wrote in his memoir: “I knew not to declare ‘Cancer is a battle I’m going to win!’ or ask ‘Why me?’ (Answer: Why not me?)” That’s a struggle a lot of patients have. Of course, Paul had flashes of anger, but, overall, he understood that terrible diagnoses happen with no warning or explanation. He’d been diagnosed while a neurosurgery chief resident, treating aneurysms and strokes and brain trauma every day. Having witnessed that suffering gave him the idea that his own suffering wasn’t unfair, it just was. That turned out to be really helpful.

Obviously, Paul’s career brought him a lot of meaning and satisfaction. For a while, he was able to return to work and graduated from residency the year after he was diagnosed with stage IV lung cancer. Soon after, when he became too debilitated to continue, he shifted from surgery to writing and wrote When Breath Becomes Air in the last 12 months of his 22 months with lung cancer.

Being physicians helped us both, especially toward the end of Paul’s life. As I described in the epilogue to the book, Paul viscerally understood the trade-offs that come with intensive care at the end of life, specifically opting against intubation. Still, that decision-making was so arduous and utterly heartbreaking.

Understanding those trade-offs is so critical. I strive to help patients and families understand their options during wrenching decisions, and, of course, oncologists do that every day. It’s not an easy job.

The Experience of Illness

How did Paul’s illness change the way he related to his patients, and how has his death changed how you practice medicine?

I remember Paul saying that his own illness changed the way he communicated with patients. For example, when describing the risks and benefits of a surgery, he focused also on the experiential aspects of what a procedure and recovery would feel like. Paul’s oncologist was doing that for him, and it was exceedingly helpful.

As for me, I practice outpatient general medicine, so not all of my patients have life-threatening illnesses. But now—having been a caregiver for Paul and now our daughter—I know there’s an intensity to the patient’s and caregiver’s experience in any case; patients remember what you say, and a few words of empathy are critically important. Finally, I have an overwhelming gratitude for my colleagues—I know how much their patients love them.

Putting Patients First

One of the most disturbing scenes in the book is the argument Paul has while in the hospital with a resident who refused to give him the erlotinib (Tarceva) Paul was taking along with other chemotherapy drugs. What was Paul’s feeling about the incident?

Well, I had extra erlotinib in my purse and gave it to Paul before the team made rounds with their attending physician. Ultimately, the attending said Paul should take it, as we knew she would. Still, I remember thinking that if one of my hospitalized patients took his “home med” without waiting for my order, I would probably be livid.

But for Paul, it would have been a day of waiting for rounds, then the pharmacy, then the chemo nurse specialist, and possibly withdrawal flare symptoms. And at the same time, I thought, this is what we should do. A hospital isn’t a prison.

Meanwhile, I don’t think the trainee who denied Paul the drug was a bad person. He was under a lot of pressure and stress and didn’t want to wake up the one fellow on call, which also says something about our medical training.

‘Hope Is Not a Plan’

A question that came up during the discussion of the book at both the ASCO Book Club and the session at the Palliative Care in Oncology Symposium was why Paul’s oncologist refused to give him his Kaplan-Meier survival estimate when he asked for it. How did Paul feel about that? Isn’t it the oncologist’s responsibility to give the patient a prognosis, especially if he asks for one?

Overall, I think the answer is yes. Paul’s oncologist knew we knew the science. She knew we knew only a small proportion of patients with advanced lung cancer are alive 5 years after diagnosis. She was being honest with Paul when she said, “I can’t tell you where you fall on the survival curve.” And now there’s more uncertainty, even for stage IV patients, because there’s a longer tail on the curve for erlotinib. Some patients are living 5 or 10 years. Ultimately, we were all operating on the same information, and we all knew it.

Lucy, Cady, and Paul Kalanithi

For us, having a sense of the prognostic range—months to a few years, a small chance of more—was incredibly helpful as we made big decisions. As we wrestled with whether to have a baby, I knew I needed to be prepared to be a solo parent. Of course, we hoped for the best. But I love what Atul Gawande says in Being Mortal: Medicine and What Matters in the End (Henry Holt and Company, 2014): “Hope is not a plan.”

Paul was always operating on the best-case prognosis and pretty much stuck to something he had written: “Tell me 3 months, I’d just spend time with family. Tell me 1 year, I’d have a plan (write that book). Give me 10 years, I’d get back to treating diseases.” But each time he became sicker and his treatment changed, there was a reckoning with what was important to him. What Paul’s oncologist did was right for our family. And Paul knew she would be there no matter what. That was very important.

Affirming Life Even While Dying

You and Paul did decide to have a child, Elizabeth Acadia (Cady). How were you able to think about building a future when Paul’s health was so precarious?

We had always talked about having children right around the end of Paul’s neurosurgery residency, when things were supposed to get easier. When he was diagnosed, we did semen cryopreservation before he started treatment and then wrestled with whether to try to start a family. Initially, Paul was more certain about it than I was. We both worried about the other, and we knew we wouldn’t be doing it to spite cancer. During that time, I read Andrew Solomon’s book, Far From the Tree: Parents, Children and the Search for Identity (Scribner, 2012). What I took away from it was that love overcomes suffering and that resilience means something deeper than what I’d thought.

Taking care of Paul was both the hardest and the easiest thing I’ve ever done, and Cady is the biggest gift either of us ever gave the other one.
— Lucy Kalanithi, MD, FACP

Taking care of Paul was both the hardest and the easiest thing I’ve ever done, and Cady is the biggest gift either of us ever gave the other one. She’s 2 now and thriving.

Leaving Behind a Written Legacy

Why was it important for Paul to write this book, and was it rewarding, even though he was so ill while going through the process?

Actually, Paul had always dreamed of being a writer and never thought about being a doctor when he went off to college. At the master’s degree level, he studied English literature and the history and philosophy of science and medicine. Ultimately, he entered medicine—and neurosurgery—because of a great interest in the brain, the mind, and the human condition. Much later, when he got such a positive response to his essay “How Long Have I Got Left?” in The New York Times,1 he realized that writing might be his saving grace.

There’s a heartbreaking excerpt of Paul’s book in The New Yorker, “My Last Day as a Surgeon.”2 For the last year of Paul’s life, he was too ill to work as a physician. But even as he became debilitated and isolated during the end of his illness, Paul was vibrant and connected intellectually and emotionally because he was writing. It was incredibly sustaining for him. This was the book he was meant to write. I wish he could have held the book in his hands.

Charting a New Path

You have spent the past year shepherding the book forward on book tours and doing interviews. What have you learned throughout this experience, and how has it changed your life, your views about medicine, and your career path?

After Paul’s death, I pictured that I’d go back to my medical career as I’d left it when he became ill—I’m a general internist at Stanford working on health-care value. But for now, half of my time is spent connecting with people in various ways over our experience with the book. I talk about a whole range of issues, including end-of-life care, meaning in medicine, the clinician-patient relationship, bereavement, resilience, and suffering. Of course, I get to talk about Paul, which has been very helpful to me during my grief. And being involved in the important conversation about high-value end-of-life care is meaningful to me professionally and personally.

When you start out in medicine, you think you’re on a particular path, and for me, that path is evolving in ways I never expected. Because of Paul’s illness, I’m much better at tolerating uncertainty—the path of my career is uncertain right now, and that’s okay. I miss Paul so much. Now I’ll see where it leads Cady and me. ■

Disclosure: Dr. Kalanithi reported no potential conflicts of interest.

References

1. Kalanithi P: How long have I got left? The New York Times, January 24, 2014. Available at http://www.nytimes.com/2014/01/25/opinion/sunday/how-long-have-i-got-left.html?_r=0. Accessed November 8, 2016.

2. Kalanithi P: My last day as a surgeon. The New Yorker, January 11, 2016. Available at http://www.newyorker.com/books/page-turner/my-last-day-as-a-surgeon. Accessed November 8, 2016.



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