by Sunita Puri
VIKING
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Copyright © 2019 by Sunita Puri
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Portions of this book appeared in slightly different form in JAMA: The Journal of the American Medical Association as “Extraordinary” and The New York Times as “Unequal Lives, Unequal Deaths.”
Excerpt from “Diving into the Wreck.” Copyright © 2016 by the Adrienne Rich Literary Trust. Copyright © 1973 by W. W. Norton & Company, Inc., from Collected Poems: 1950–2012 by Adrienne Rich. Used by permission of W. W. Norton & Company, Inc.
“Postcard from Kashmir” from The Half-Inch Himalayas by Agha Shahid Ali. © 1987 by Agha Shahid Ali. Published by Wesleyan University Press. Used by permission.
Excerpt from “Poem with Two Endings” from Given Sugar, Given Salt by Jane Hirshfield. Copyright © 2001 by Jane Hirshfield. Reprinted by permission of HarperCollins Publishers.
LIBRARY OF CONGRESS CATALOGING-IN-PUBLICATION DATA
Names: Puri, Sunita, 1979- author.
Title: That good night : life and medicine in the eleventh hour / Sunita Puri.
Description: New York, New York : Viking, [2019] |
Identifiers: LCCN 2018038025 (print) | LCCN 2018053351 (ebook) | ISBN 9780735223332 (ebook) | ISBN 9780735223318 (hardcover)
Subjects: LCSH: Puri, Sunita, 1979- | Women physicians—United States—Biography. | East Indian American physicians—Biography. | East Indian American women—Biography. | Palliative treatment. | Physician and patient. | Medicine—Religious aspects.
Classification: LCC R154.P8675 (ebook) | LCC R154.P8675 A3 2019 (print) | DDC 610.92 [B]—dc23
LC record available at https://lccn.loc.gov/2018038025
The events described in this book are based on my recollections of the situations I experienced. Where possible, I have consulted with my professional colleagues and with family members of patients to render the most accurate versions of several stories presented here. In order to protect the privacy of my patients and colleagues, their identifying details—including but not limited to their names, ages, genders, ethnicities, occupations, familial relationships, places of residence, and medical details and/or diagnoses—have been changed. Any resemblance to persons living or dead resulting from changes to names or identifying details is entirely coincidental and unintentional.
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For my mother and my father, who gave me this life—
For my brother, who reminds me to enjoy it—
And for Sathya, who lights the way—
With love and gratitude
Therefore, because death stirs people to seek answers to important spiritual questions, it becomes the greatest servant of humanity, rather than its most feared enemy.
Lord Krishna to Arjuna, Bhagavad Gita
I came to explore the wreck.
The words are purposes.
The words are maps.
I came to see the damage that was done
And the treasures that prevail.
I stroke the beam of my lamp
Slowly along the flank
Of something more permanent
Than fish or weed.
Adrienne Rich, “Diving into the Wreck”
CONTENTS
Title Page
Copyright
Dedication
Epigraph
Author’s Note
Part 1. BETWEEN TWO DARK SKIES
One. Shift
Two. Words
Three. Decisions
Four. Extraordinary
Part 2. THE UNLEARNING
Five. The Unlearning
Six. Believe
Seven. Gasp
Part 3. INFINITY IN A SEASHELL
Eight. Begin
Nine. Drive
Ten. Fight
Eleven. The Grip of Life
Twelve. Transition
Thirteen. Speak
Acknowledgments
About the Author
Author’s Note
I was five years old when I first heard that life is temporary.
During the years that my mother worked long shifts as an anesthesiology resident, my father became my guide and my best friend. He cooked me runny eggs in the morning, dried and brushed my unruly dark hair, taught me how to pray, and took me out to eat at fast-food restaurants that my mother would never approve of. One autumn evening after devouring hush puppies together, we sat on the couch next to the window in our small apartment, looking out at the evening sky as my father often did, my fingers still sticky from ketchup and cornmeal. An engineer by training, my father patiently and thoroughly answered my questions about why the sunset burned a thousand bright colors, and why I could see the waning sun and the bright moon in the same sky. When I told him that I wished the sky would always look as pretty as it did then, he told me that all of life is like the evening sky: beautiful, but temporary. Beautiful in part because it is temporary.
“Everything in life—you, me, the sky—will change and then disappear,” he told me, pointing first at the navy blue, and then at the fading pink and orange. He told me that the plant in our living room would at some point wither and die, that someday he would have gray hair and struggle to walk with a cane, that everything and everyone in life changes and passes like the fading colors we watched. The voice he spoke with, quiet and solemn, wasn’t his animated reading voice, his harsh scolding voice, or his melodious singing voice. I must have looked frightened; he told me not to be afraid. “This,” he said, “is the natural order of things, something none of us can escape.” The sooner you learn this lesson, he told me, the more you will value each moment in life, knowing that it is a temporary gift.
This was the first of many conversations he and my mother would have with my brother and me about death and impermanence, and what it means to live well with the knowledge of our transience. But back then, my father and I sat together quietly as I thought about his words, watching as the sun vanished and the stars appeared.
* * *
More than two decades later, during medical school and residency, I found myself unprepared to face the mortality and suffering of my patients. Though my father’s words echoed in the back of my consciousness, reminding me that death is both natural and certain, as a medical student I focused solely on preserving life. I began to believe that a longer life was a better life. A doctor’s job was to manipulate, control, and postpone death, not to accept it as inevitable. We learned to rage against the dying of the light.
I savored the victories, the times when I could treat a terrible pneumonia or diagnose a new and treatable cancer. But sometimes I wondered if my efforts simply prolonged death instead of returning my patients to the quality of life they assumed our treatments could restore. Though I could mobilize an array of remarkable modern technologies to keep a patient alive, I hadn’t the slightest clue how to acknowledge or discuss what all ancient civilizations could articulate and even embrace: the certain end we would all face.
I hadn’t expected that my years of medical training would culminate in the choice to pursue palliative medicine—a relatively new specialty focused on treating the pain and suffering of patients living with
a serious illness that often cannot be cured. Although people for centuries have suffered and died from terminal illness, the American Board of Medical Specialties didn’t recognize hospice and palliative medicine as a distinct medical subspecialty until 2006. I also hadn’t expected that, in choosing a field that embraces and addresses the human suffering and mortality that Western medicine overlooks and at times denies, I would come to a different and new understanding of medicine’s role in our lives.
My work in the borderland between life and death has shown me how we—doctors, patients, families—talk around, rather than about, suffering, dignity, living, and dying. We rely on euphemism, silence, and jargon when we most acutely need to be clear and articulate. Medicine must find new language to discuss and destigmatize this experience that all of humanity shares; our silence and avoidance have resulted in much unnecessary anguish. The principles of palliative medicine have the capacity to transform medical practice by offering patients and doctors alike useful and probing language that could change the way we communicate about illness and end of life, both within our homes and in hospitals. This book is my humble attempt to inspire tough but necessary conversations in hopes of easing the suffering associated with the silence around mortality.
On a more personal note, tending to my patients has also shifted the meaning of my own life, forcing me to reevaluate what matters most to me, and to reconsider what it means to live and love well. My hope is that the stories of my patients, colleagues, and family may free us all to acknowledge that a deeper understanding and embrace of our own mortality may actually revitalize how we live, and what we consider to be most meaningful in each of our brief lives.
For we will each age and die, as my father told me years ago. We will lose the people we love. No matter our ethnicity, place of residence, income, religion, or skin color, our human lives are united by brevity and finitude, and the certainty of loss. Just as we strive for dignity and purpose throughout our lives, well before the light fades, we can bring this same dignity and purpose to our deaths, as we each journey into our own good night.
Part 1
BETWEEN TWO DARK SKIES
One
SHIFT
San Francisco, 2010
Donna was in her mid-sixties, with wide brown eyes and the smoky voice of a jazz singer. Her skin, sprinkled with freckles and sunspots, stretched tightly against her delicate cheekbones and jaw. It was an unusually balmy afternoon in San Francisco, and somehow the day’s heat and humidity had made its way into her room on the fourteenth floor of the usually chilly university hospital. Donna grasped a handheld electronic fan, closing her eyes as it cooled her face and tousled strands of the thin gray-brown hair that brushed her shoulders. When I met her, I was a fourth-year medical student weeks away from graduation, yet increasingly uncertain that medicine was the right career for me.
Five years earlier, Donna’s kidneys began to fail from a combination of high blood pressure and diabetes. She was weak and nauseated, and missed so many days at work that she nearly lost her job as a secretary in a contractor’s office. In order to feel better and to survive, Donna had to begin dialysis, a three-hour-long treatment three times a week that would clear her blood of the waste products and toxins that her failing kidneys could no longer remove. A vascular surgeon operated on Donna’s arm to create a fistula, a connection between an artery and vein that enabled the dialysis machine to remove, clean, and return all of Donna’s blood to her body. For the first few years, dialysis not only staved off death but actually improved her energy and outlook. She went back to work part time. Her nausea vanished and she managed to gain back the ten pounds she’d lost when kidney failure claimed her appetite.
But a few years later, her nausea and fatigue returned; dialysis began to cause the symptoms it had once fixed. Donna cycled in and out of the hospital with severe infections of the skin around her fistula and blood clots that plugged her fistula, rendering dialysis impossible. During a recent hospitalization, a team of physicians had placed a temporary dialysis catheter in one of the large veins in her neck while another team worked on repairing her fistula, which had clotted again. Yet she returned to the hospital several weeks later with a severe pneumonia, likely caused by powerful bacteria she’d been exposed to during her last hospital stay. When she finally left the hospital, she needed three weeks’ worth of physical therapy in a nursing home before she was strong enough to care for herself at home. Though she was able to return home, she struggled to dress herself, cook, or drive to her dialysis sessions every Monday, Wednesday, and Friday.
She had come to the hospital today because a blood clot once again clogged her fistula. Her doctors wanted to place another temporary dialysis catheter and consult a vascular surgeon to create a new dialysis fistula altogether. But Donna said no.
I don’t want dialysis anymore, Donna told her doctors. I’ve lived a good life.
If Donna doesn’t want dialysis, her doctors wondered, then what does she want and how should we treat her? These were questions I had rarely encountered or considered in my years as a medical student. Like the doctors who taught and supervised me, I was hardwired to preserve and prolong life. On the few occasions I’d seen patients opt out of lifesaving treatments, I’d watched my supervising doctors struggle to articulate another plan—and the consequences and limits of any plan at all. Donna’s team knew they needed help having that sort of delicate conversation with her, so they called the palliative care team to speak with Donna and help clarify what she wanted if she didn’t want dialysis.
As it happened, I met Donna because I had chosen to spend two weeks of elective time on the palliative care service at the University of California, San Francisco, where I was finishing my last months of medical school before beginning three years of residency training in internal medicine. I’d completed all of the required rotations to graduate, having spent one to two months each learning from teams of internal medicine physicians, gynecologists, family physicians, surgeons, pediatricians, psychiatrists, and neurologists. Now, in these last months of medical school, I’d been able to choose which medical specialties I wanted to learn, and which doctors I wanted to learn from.
I searched the list of electives for inspiration. Medical school had been far more technical than humanistic, its emphasis heavy on the science of medicine, light on the art of doctoring. In the first few years of medical school, I understood why this might be the case: I couldn’t diagnose and treat patients without an expert understanding of the body’s physiology, the ways disease could alter it, and the proper ways to treat the dizzying myriad illnesses humans suffered. Yet during my rotations, when I actually saw patients under the guidance of a resident and attending physician, I’d been struck by how little time I spent with patients—no more than a few minutes on rounds, and occasionally a few more minutes later in the day, when absolutely necessary. Entire days whizzed by as we ordered and waited for the results of lab tests and CT scans, typed detailed notes about patients into their electronic health records, met with social workers to figure out how to get patients home as quickly as possible, and talked with cardiologists and gastroenterologists about their recommendations for our patients. Caring for patients somehow meant spending very little time with them. One day, out of curiosity, I timed myself completing my assigned tasks. I spent twice as long in front of a computer as I did examining and talking to my patients.
As graduation and the start of residency loomed, thoughts of quitting medicine arose unbidden in my mind. When I looked through the list of electives I could take, I was really searching desperately for reasons to finish my training. I’d go on to spend a month working with a psychiatrist who specialized in treating patients struggling with substance abuse. I’d spend another month working with a child abuse response team at the county hospital. A classmate recommended that I take a two-week-long rotation with the palliative care team, and I found myself signing up for an elective with them, too.
>
Donna was the first patient I’d see with Dr. McCormick, the physician on the palliative care team during my rotation. A handsome man with gentle brown eyes and a warm smile, Dr. McCormick wore a blue plaid shirt and khakis and worked closely with a social worker and a chaplain named Ellen. We sat together around a rectangular table and talked about each of the twelve patients our team was seeing, including Donna, our newest referral. “Sounds like the medical team wants to do what they can to help Donna continue dialysis, but she’s not digging that plan,” Dr. McCormick said, summarizing the dilemma that Donna’s doctors needed us to address. “So let’s go find out what she’s got on her mind!” He was casual and personable, professional but not distant. As we walked together down a set of hallways to Donna’s room, it struck me that Dr. McCormick had never met Donna before. I wondered how he, a stranger at the eleventh hour of Donna’s life, would manage to earn her trust and ask her intimate questions that it seemed nobody had asked her before, including the many doctors who had been taking care of her since her kidneys began to fail.
Sunlight poured through the window across from Donna’s hospital bed. I noticed her squinting and lowered the shade slightly. Instead of hovering over her or leaning against the wall as she spoke, Dr. McCormick, Ellen, and I sat in gray folding chairs facing Donna. On the table next to her hospital bed, there was a brown tray with plastic rectangles of smashed peas, fluorescent orange carrots, and a small chicken breast. Someone had checked the boxes “low sodium” and “renal diet” and “diabetic” on a pink slip of paper taped to the side of the tray. “It’s dialysis food,” Donna said, wrinkling her nose as she noticed me looking at her lunch. “Makes me more nauseated than my kidneys do.” A copy of Chicken Soup for the Soul, many of its yellowed pages dog-eared, rested next to her untouched tray.
