Fran Smith and Sheila Himmel

Changing the Way We Die

Why Writing Matters

A terminally ill doctor finds a way to communicate, for now and for later

Posted Jan 15, 2015

You could write a book. At the end of life, many people find they finally have the time and the motivation to do things they’ve always wanted to do. Brittany Maynard wanted to see the Grand Canyon. A woman in our book, Changing the Way We Die, wanted to have a church wedding. But writing a book comes up often—surprisingly often, considering how much work it usually involves.

Sometimes the books are intended to help other people know about the disease, to offer comfort that they are not alone. It will be that for Stanford neurosurgeon Paul Kalanithi, 37, who has terminal lung cancer. But Kalanithi has an even more urgent reason to write. His book will be a way to connect with his daughter, who was born in July. As he told a conference of medical students in the fall, “I want her to know what her father was about.”

Kalanithi was diagnosed with stage 4 lung cancer in 2013. In the time he has left, he has to focus. When asked what he thought of the end-of-life bestseller Being Mortal by Atul Gawande, he had to admit to hundreds of medical students at Stanford, “It’s sitting on my dresser. I want to finish my book proposal first.”

Having spent all these years in medical training, he had come to believe that life could be simply the sum of the choices you made: make the right choices, work hard, keep learning and stay in control. He did all that, and yet here he was: a nonsmoker in his 30s with lung cancer.

After that shocking news, there have been other surprises for a neurosurgeon whose work involves terminal diagnoses: “What surprised me as a doctor was not that this could happen to ME, but how difficult was the existential side: What to do with my life when I realized I didn’t have the 40-year arc I’d planned on. Maybe I have one-tenth of that.”

He would do the chemotherapy, but he also knew that eventually the drugs would fail. “Then what will I do?”

His life’s arc collapsed into three periods:

1. Grieving

2. Back to life (chemotherapy worked for a while)

3. Relapse

A year ago, Kalanithi discovered the power of connecting with people through writing after The New York Times ran his opinion piece, “How Long Have I Got Left?”

He wrote, “Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live.”

Readers responded and are still responding to what Kalanithi wrote about being a doctor with a terminal diagnosis.

While pushing to get the book done, Kalanithi is active on Twitter, as @ParsOpercularis: Writer, neurosurgeon, sports enthusiast, dude with lung cancer (not necessarily in that order).

Note to those of us who aren’t brain surgeons: Pars opercularis is a region of the brain important in speech and language.

As Kalanithi told the students, “I found out why writing is important.” Words don’t cure, but they can calm and connect people, and even heal. He finds comfort in poetry such as James Shirley’s "The Glories of Our Blood and State":

"The garlands wither on your brow;

Then boast no more your mighty deeds!

Upon Death's purple altar now

See where the victor-victim bleeds.

Your heads must come

To the cold tomb:

Only the actions of the just

Smell sweet and blossom in their dust."

As Kalanithi sees it now, we all have times when we’re victors and when we’re victims.

His conversations with patients and families have changed—now that he is able to share what being terminal feels like. It isn’t about the percentages.

That was his message to the medical students at Stanford. He ended his talk by reminding them that patients are the point, even under the increasing burdens of bureaucracy and technology. “Does life have to end in CPR and ventilators?” he asked. “Go back and read your med school essay. See if it’s still recognizable.”

They gave Kalanithi a standing ovation, clearly rooting for him to finish his book.

-- Sheila Himmel

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