‘Cultural avoidance of talking about death leads us away from living well until we die’

An interview with Lucy Kalanithi, MD

August 2, 2016

By Margie Coloian, MSJ

Lucy Kalanithi recalls the power of language when her husband Paul was dying. His nurse practitioner came to his bedside to break the devastating news that the medication he had been taking had not been effective in treating his advancing lung cancer. It wasn’t the words alone, Lucy explains; it was the way the nurse spoke them, gently and with utmost affection.

That interaction and others with clinicians at Stanford, where Paul was being treated, made indelible impressions on Lucy, an urgent care physician at the same hospital. Usually short in duration, the empathetic exchanges between Paul and the clinicians became lasting takeaways after his death at age 37, Lucy said in a recent interview for the Lown Institute blog.

Paul died 16 months ago, in the midst of completing his training as a neurosurgeon. Since then, his eloquently crafted memoir, When Breath Becomes Air, which details his journey through terminal illness, has been read by millions and continues to receive rave reviews. The book’s publication fulfilled a final promise Lucy made to her husband and contains a moving, loving epilogue written by her, and a dedication Paul penned for their daughter, Cady, born eight months before his death. (“You filled a dying man’s days with sated joy. A joy unknown to me in all my prior years.”)

Nearly every sentence Lucy relates about Paul’s journey begins with “our family story.”

“Our family story is that Paul wanted to live in a meaningful way at the end of life,” she explains. “When he went into respiratory failure, it wasn’t clear to us that it would be reversible. It could be pneumonia, he could get better. But he was very frail,” she adds, “and we knew if he were to be intubated, he would never be extubated.”

While decisions to treat or not at the end of life are difficult for many patients, Lucy believes that deep down, many are eager to have the conversation, but getting there is uncomfortable. Once Lucy asked a neurosurgeon-colleague how he broaches end-of-life issues with his dying patients. He told her that he doesn’t— unless the patient opens the door to it. Which got Lucy thinking that maybe other doctors do the same—wait for patients to ask. Could it be that patients want their doctors to bring it up first?

“Avoidance of talking about death leads us away from living well until we die,” Lucy says.

Nevertheless, she understands why patients hold out hope when they’re told there is a small chance of living longer. “If you hear there is only a 10 percent chance, or 1 percent chance, you hope you’re the one in the minority,” she said. “It’s impossible for everyone to be above average, but when you’re offered a last-ditch treatment, I can see how it might feel nonsensical to decline. But the trade-offs are so important to understand. At the end of his life, Paul declined intubation and instead chose to hold our daughter.”

In Paul’s case, palliative care was enlisted early. He had questions: How was he going to die? Would it be respiratory failure? He was often fatigued and had only limited periods when he could focus. An avid writer and needing to finish the book, Paul asked what could be done to see that his passion for writing stayed alive. The doctor prescribed a stimulant to help, allowing Paul to write, at times voraciously, even while hooked up to chemo.

“They [the doctors] were all listening to what Paul wanted to do, and they were being creative about helping him,” Lucy said.

Paul’s experience reaffirmed for Lucy the importance of knowing patients’ values and goals and has helped her become a better physician. Having witnessed the importance of these conversations from both sides, she prioritizes engaging patients in decisions.

“It gives me an opportunity to connect with patients and helps me understand their values so that I can guide them through their illness.”