Editor’s Note: Jessica Nutik Zitter, M.D., MPH, is an expert on the medical experience of death and dying. She attended Stanford University and Case Western Reserve Medical School, and completed her residency in internal medicine at the Brigham and Women’s Hospital in Boston. She was a fellow in pulmonary and critical care medicine at the University of California San Francisco. Zitter is double-boarded in the two specialties of pulmonary/critical care medicine and palliative care medicine—a rare combination. She writes for The New York Times, The Huffington Post, Pacific Standard, The Atlantic, and Journal of Palliative Medicine, and is featured in Extremis, an award-winning documentary about end-of-life decision-making in an ICU.
Although Sam and his brother-in-law were close, they were very different people – both in how they lived their lives and in how they faced their deaths.
Sam, my husband’s father, was a soft-spoken, kind, modest man. He grew up on the Lower East side of Manhattan in a fifth-floor walkup, helping his hard-working parents make ends meet. On December 8, 1941, the day after Pearl Harbor, he enlisted in the Navy to support his country. He fought overseas for four years and, when he returned, he went to college at night on the GI bill, but never made enough credits to graduate. Then came a wife and family, and so his formal education was put on hold. For decades. He was a giving man, always available, humble and caring. After everyone else’s needs were met, children established, grandchildren thriving, he retired from sales and returned to school, quietly and for his own enjoyment. He graduated at age seventy-three from Montclair State University with a degree in literature, a longstanding passion.
When death came knocking, my father-in-law faced it with honesty and acceptance, and then went on to make it the best that it could be. With the news that the cancer was not responding and the worsening weakness and frailty, he realized that it was time to accept reality. He had heard the cautionary tales that I, a critical care physician, had told about attaching frail and seriously ill people to life support. He didn’t want it, he said. “But maybe a hospital stay could get you through an infection,” some members of his family protested. But he was clear: He didn’t want to go in and out of the hospital to try to milk every last drop of time; he wanted to live as well as he could until it was his time to die, surrounded by his family, with familiar sights, smells, and sounds around him. And so hospice services were engaged, something very unusual fifteen years ago, before the medical subspecialty of Palliative Care became more widely known, along with striking data about the benefits of hospice. For the last forty-eight hours of his life, there was a sign-up chart for “handholders.” Guitars were strummed. The scent of chicken soup wafted through the house. Grandchildren played around his bed as his wife and children held his hands in shifts, keeping them warm even as he lapsed into a coma and ceased communicating with us. Sam died exactly as he had wanted to, comfortable and peaceful to the end.
Uncle Barry, whom I write about in my book Extreme Measures, was Sam’s brother-in-law. Although they were both Jewish, of the same age, family-oriented, and from New York, the similarities stopped there. Barry had been a golden child. Son of a renowned doctor, he graduated in the first class at Bronx High School of Science, writing its Alma Mater in his senior year. When Pearl Harbor was bombed, Barry’s parents cautioned him against immediate enlistment and he agreed to attend Harvard for a semester before heading to Europe. Once he got there, he became a forward observer, parachuting alone behind enemy lines to direct fire at Nazis. His stories were harrowing, including the liberation of Dachau, where he was the second American to walk into the camp. Barry was a genuine hero, brave and invincible. Upon his return, he completed his bachelor’s degree and then law school at Harvard, going on to practice into his eighties.
When his health began to deteriorate, Barry worked harder, continuing to ride the bus to his law office in New York City. If necessary, the doctors would save him, he was sure, with their modern technologies and treatments. He refused to talk about his preferences around death to his son, who begged him to provide guidance. He grew steadily weaker, one hospitalization leading to another, and when he finally could speak no more, his body was placed on life support. He lay on his back, consciousness alternating with coma and confusion, his mouth occupied by a large plastic tube that snaked its way back into his throat, his arms tied down so as to prevent dislodgment of the tubes that attached him to the last bits of his life. Everyone involved, including the doctors who felt mandated by his silence to keep him alive, could never imagine that Barry would really have wanted to live this way. And his son, who had tried for months to elicit his preferences, was forced in the end to choose the moment of his father’s death.
There is no formula for how to die well. But from what I have seen in my many years of caring for the dying, this has little to do with class, education, or success. In my experience, it has more to do with a certain type of humility. It comes down to actually accepting that we are mortal. This is not easy for most of us. The first response is fight or flight, a frantic search for any magic pill that can save us from that final existential moment. And with our modern trove of miracle cures, the medical world is the perfect refuge for us at this most terrifying time. What results is a perfect storm of fantasy and denial fueled by the machinery that can prolong the inevitable. Currently, to my mind, we are in a public health crisis, with almost thirty percent of Americans dying in similar ways to my Uncle Barry, and surveys show us these are deaths almost no one would actually choose if they knew what really lay behind the curtain.
In my book Extreme Measures I write about many patients – some, like my father-in-law, who died by their own design; others, like Uncle Barry, for whom death was assigned by default. I wrote the book in order to enable people to learn how to navigate this difficult terrain and to empower them to maintain their autonomy right up until the very end. To die with dignity, which is what we all deserve.