Many physicians and patients have learned from the life and death of Paul Kalanithi, MD. His memoir, “When Breath Becomes Air,” describes the experience of being diagnosed with stage 4 lung cancer during his neurosurgical residency, and it has been a New York Times bestseller since its posthumous publication in January 2016.
His widow, Lucy Kalanithi, MD, FACP, shared some of the lessons she herself took from his illness and death during an Internal Medicine Meeting 2017 session titled “In the Patient's Voice: Finding Inspiration in Patient Partnership.” Dr. Kalanithi is a clinical assistant professor of medicine at Stanford University in Palo Alto, Calif., and author of the epilogue to her husband's book.
She was asked by Steven Weinberger, MD, MACP, ACP's CEO emeritus, for take-home lessons for other physicians on a number of topics.
“In some ways, Paul and I both changed as physicians as a result and in some ways we didn't,” she said. Both were already interested in end-of-life care, particularly the moral distress it can cause physicians. “We had had a lot of conversations about that as we were residents. I had even thought about becoming a palliative care physician, so when he got sick, one of my first thoughts was I'm so glad we already have a language to talk about this.”
She reported how her husband applied lessons from his illness when his initial cancer treatment made him healthy enough to return to practice as chief neurosurgical resident.
“He'd always been very invested in the idea of informed consent and shared decision making, but he also used to concentrate more on especially the rare but serious side effects—bleeding, infection, and death,” said Dr. Kalanithi. “Once he was a patient, he was describing for patients what was most likely, what would they actually feel like when they woke up from the surgery, what would it be like to be in the ICU, and how long would it really take until they got back to work.”
A night that her husband spent in the hospital changed her own perspective on patient interactions. The resident who was treating him didn't want to order one of his regular medications, saying that it could wait until morning rounds—possibly because prescribing it immediately would require paging the oncology fellow in the middle of the night, she noted.
“We knew if Paul skipped a dose, he would have pretty significant disease flare almost immediately,” said Dr. Kalanithi. “We also knew that if they ordered it on rounds, it was going to take until 2 p.m. for us to get it, because of how things work in hospitals.”
She had the medication in her purse, so he took it, even though the hospital team hadn't prescribed it. “That was a really stark moment for me,” Dr. Kalanithi said. “If this were my inpatient who took the home med without me ordering it, I would be like, ‘This is a safety issue, this is crazy, this patient is not doing what I said.’”
As a physician, she had always believed that she involved patients in the plan of care but now sees that concept in a new light. “They're letting me into the plan of care. I have this expertise, but what this is really about is the patient's life and goals and values and their own ability to make real decisions about their bodies,” she said.
She also discovered new value in the physician-patient relationship from the patient's side. “The emotional dependence Paul had on his oncologist was really surprising to me, especially for a young male neurosurgeon, who was sort of large and in charge,” she said. Despite his own expertise, her husband hung on the oncologist's words, parsing them long after a visit.
Even shorter interactions with clinicians had memorable impacts. “I remember the nurse practitioner coming in and looking Paul in the eye and saying, ‘I really hoped you were going to be one of those people who was on Tarceva for seven years and you're not and I'm really sorry,’” said Dr. Kalanithi. “She was very emotionally present.”
Dr. Weinberger asked Dr. Kalanithi for any advice on how to provide both honesty and hope for terminally ill patients. “I'm always afraid of this question...I don't know the answer,” she said.
Her experience did provide some insights into the dilemma. “You can be doing aggressive medical treatment but at the same time thinking about how to prepare your family for a life without you. I think patients are holding those two concepts at the same time. Everybody is thinking about the scary stuff all the time,” she said.
Her husband's oncologist mostly refused to prognosticate, with two exceptions. She made clear to the whole family that his stage of cancer was incurable, and when the end was very near, she warned that only “days to weeks” were left.
Although her refusal was initially surprising and upsetting, Paul Kalanithi understood the dilemma, and the New York Times essay that led to his book contract was about making sense of uncertainty. “He says something like trying to soothe existential distress with numbers is like trying to quench a thirst with salty water,” said Dr. Kalanithi.
Instead of numbers, the oncologist led a helpful concentration on specific goals. “What she did do was really exhort him to focus on what was valuable to him and let her know how she could help him achieve that,” said Dr. Kalanithi. Consideration of what was most important led the Kalanithis to have a baby, who was eight months old when Paul Kalanithi died.
Of course, the oncologist knew that the Kalanithis had the expertise to prognosticate without her, which they did by considering best, worst, and most-likely scenarios.
“We could literally look at the Kaplan-Meier curves ourselves,” Dr. Kalanithi said. “Meanwhile, two-thirds of patients with metastatic cancer in various studies think their treatment does have curative intent, so what's happening in those families that are trying to decide whether to have a baby?”
Being on a book tour has revealed to Dr. Kalanithi how interested nonphysicians are in such dilemmas. “Patients and families are very interested in this question of how do you seek and get care that fits with your values, particularly in end-of-life care,” she said. “I think people are aware that maybe for the first time in human history, in modern Western culture, suffering and dying are quite hidden from your experience as a normal person.”
The book has also revealed aspects of medical training that are typically hidden from patients, and Dr. Kalanithi found a parallel to that in her own experience. Her husband's graveside service was conducted by a young pastor. “He was spectacular, but later he said, ‘That was my first time I've ever done anything like that,’” said Dr. Kalanithi. “I couldn't believe it. I was so reliant on him and he was so skillful.”
She thought back to the things she'd done as a medical trainee, from a lumbar puncture to a family meeting, and saw the situations in a new light. “Whoever is on the other side of that is not analyzing your experience. They are just dependent on you,” she said.
As physicians, she and her husband were less dependent and more prepared than most people in their situations, yet still they struggled. “One of the things that was most striking to me was the complete upheaval in identity for Paul,” she said. “So much of your identity is tied up in your future self...To have that evaporate was so utterly disorienting.”
Her husband found new purpose in his writing, and the Kalanithis had the benefit of excellent understanding of and access to the health care system. “Many, many stressors we didn't have, and it was still almost overwhelmingly difficult to cope and go through this experience together,” she said. “I think it sort of taught me something about what quality in health care means.”
Dr. Kalanithi also gained new perspective on optimal end-of-life care. Her husband had hoped to die at home, but an unexpectedly rapid decline led to him being admitted to the ICU. He had a do-not-resuscitate order, yet there were still ongoing difficult discussions—in which her husband participated—about whether to intubate.
“It's interesting, even as two physicians, how quickly it can get away from you. We knew he was dying, but it was moving in these unexpected ways,” said Dr. Kalanithi. Her husband died on comfort care in the ICU, which she now thinks may have been for the best.
“It sort of rocked all my assumptions,” she said. “I'll never again read an obituary that says, ‘He died peacefully surrounded by his family.’ It's peaceful, but it's also unbelievably painful. I'm kind of happy that didn't happen in our bedroom. It was hard enough to be in our bedroom after Paul died.”
Dr. Kalanithi is now thinking about how to apply all these lessons to her career in medicine. “My previous course was thinking about health care value in terms of monetary costs,” she said. Now she is interested in ensuring that care, particularly at the end of life, is in accordance with patients' and physicians' values.
A moment at the end of her husband's life, when she watched the ICU residents carefully analyze all of his organ functions, encapsulated this change in perspective. “The main question of the quality of Paul's care was not all those lab values. It was: Is an infant allowed into the ICU?”