Perspectives on living and dying from best-selling author’s widow

Physician and speaker Lucy Kalanithi is the widow of Paul Kalanithi, MD, who wrote the New York Times best-selling memoir “When Breath Becomes Air.” The book was published after Paul Kalanithi’s death from lung cancer, with an epilogue written by his wife.

Dr. Lucy Kalanithi, who is a clinical assistant professor of medicine at the Stanford School of Medicine, will offer the keynote address Jan. 25 at the LEAD (Leadership, Education, Advocacy & Development) conference in Austin, Texas.

We spoke with Dr. Kalanithi about what she learned during the wrenching experience of watching her husband, a promising neurosurgeon, die young. This is an edited transcript.

In your TedMed talk you say that you fell in love with Paul when you saw him interacting with his patients because he was seeking to understand the experience of illness and not just its technicalities. How important is this understanding in medicine?

Paul’s whole fascination with medicine and neurosurgery backed up to this idea that the brain is an organ but also responsible for our consciousness.

With all the breakthroughs in medicine, we have so much knowledge and treatment options but we really need a lot of wisdom to help people apply it in a way that fits with their values. I think what we do [as physicians] is so much more than a purely scientific endeavor. It’s all about matching what we offer to an individual human being‘s values and helping people understand the limitations of medicine.

You’ve spoken about the last day of Paul’s life and how he ultimately declined a ventilator and CPR. We often hear about how doctors die with less intervention than their patients. Can you tell us about Paul’s decision and how being a physician helped shape it?

Throughout his life, Paul’s top priority was mental lucidity and uncovering meaning and purpose in his life. Toward the end of his life, the things that were most important to him were writing and spending time with our family and our daughter.

With the decision to consider advanced life support technology, the real thing that we were weighing was if it got him more time, was it going to be meaningful time? Ultimately as physicians we witness what it means to undergo that kind of life-prolonging therapy and we knew the drawbacks of it. At the same time, really getting a grasp on what’s happening and making a decision like that when you’re presented with options about your own life is really challenging. So while we relied on our knowledge as physicians, we also relied on Paul’s care team and on the input of our family.

You’ve said that resilience doesn’t mean bouncing back to where you were before a diagnosis or pretending that things aren’t tough. So what does resilience look like in the face of adversity?

I went through a period of depression as a resident and I started seeing a great therapist who had this saying on her office whiteboard that really changed the way I related to discomfort or adversity. It was really simple: Pain + non-acceptance of pain = suffering.

At first I really didn’t get it, but eventually I developed an understanding of that idea. Paul phrased it really well in the book when he said, “People are asking whether I ask ‘why me’ and instead the answer is ‘why not me?’ ”

When I think about resilience now, it’s much less about getting back to how we were before and instead more about learning to bear the challenges that will likely come. I used to think about how I want to raise our daughter to be happy, and now I think I want to raise her to be solid, resilient and purposeful and accepting.  Those things are different from just a gleeful life.

As Paul transitioned from doctor to patient, he wrote of being “totally disoriented.” As he faced his own mortality, he turned to his oncologist for guidance. What role does a compassionate physician play at the end of life, and how important is that role?

It’s hugely important. In the setting of his terminal illness, she really brought him back to life in a way by helping him understand what he could still do and by being committed to shaping his treatment in a way that worked for him. She held open options for him and as he got sicker and sicker, she was right there as his own expectations and goals kept shifting and changing.

We relied on her for the treatment, but also as an emotional touchpoint. For a young, male neurosurgeon not used to depending on people, Paul was emotionally connected to her in a way that I think had to do with the vulnerability of illness. It really underscored for me how important the things we say to [patients] are.

You’ve said that it’s an especially tough job for physicians to help patients navigate through terminal diagnoses, and that sometimes doctors substitute hope for answers by emphasizing the best-case scenario. Do you think that painting a rosier picture helps the patient?

No.  This is one of the things that made us lucky as physicians. There’s a statistic out there that about two-thirds of patients with incurable cancer think their cancer can be cured. I think for us the decision on whether or not to have a child and when Paul should stop focusing on neurosurgery and focus on writing had everything to do with knowing his prognosis.

You and Paul decided early on to not hide from the truth. It was this openness that meshed his medical care with the way he wanted to live out his life. What steps can a physician take to ensure that a patient’s health care matches their values and the way they want to live and die?

A lot of this has to do with just asking people about what their fears and goals are, but I also think that medical schools are starting to teach how to elicit values [from patients] and how to understand the big questions. There are also resources that I really like for practicing physicians, like the Serious Illness Care Program and Vital Talk.

Tony Back, MD, created Vital Talk and he’s totally focused on this question. So, for example, when a patient says ‘I’m going to fight this, doc,’ he urges people to think about what that means. In addition to survival, what else are you fighting for? It’s a really expansive question that he asks people and he uncovers all kinds of answers.

Atul Gawande, MD, is behind the Serious Illness Care Program. It’s about the same ideas he talked about in “Being Mortal” and got excited about. It explores all the ways someone’s illness is tied up in their life and how to participate in that. It’s amazing.

At the end of your TedMed talk you envision what you’re going to say to your daughter, Cady, one day about her father and his death. You said: “Engaging the full range of experience, living and dying, love and loss, is what we get to do. Being human doesn’t happen despite suffering. It happens within it.” How can embracing the suffering help us live a fuller life?

I have a couple of answers for that. One is that bigger idea that pain and loss are going to be part of all our lives and incorporating it into our understanding of what it means to live. Also, when I’m speaking, people tell me about their own life. I think there are all these private, closely held, imperfect experiences that we’re all carrying around. It’s a richer experience to be sharing that stuff and it’s the flip side of what we talk about in medicine. We can bring people’s real lives into the hospital. We can bring that same connection to medicine.