Copyright © 2018 by Daniela Lamas
Cover design by Julianna Lee
Author photograph by Beowulf Sheehan
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Several of these pieces have appeared, in different form, in the New York Times and at newyorker.com. Excerpt from “Stepping Stones” by Rachel Hadas copyright © 2016 by TriQuarterly Books/Northwestern University Press. Published 2016 by TriQuarterly Books/Northwestern University Press. All rights reserved. Reprinted with permission.
ISBN 978-0-316-39318-8
E3-20180213-DANF
Contents
Cover
Title Page
Copyright
Dedication
Note
Epigraph
Introduction
1: You Can Stop Humming Now
2: Ten Percent
3: Life on Battery
4: Nightmares After the ICU
5: Emergence
6: Where the Bridge Ends
7: Networking for a Kidney
8: An Unexpected Adulthood
9: How It Begins
Afterword
Acknowledgments
About the Author
Newsletter
For my mother
Note
This account is based on both my clinical practice and my independent reporting. Certain names and identifying details, including those for all of my patients, have been changed. In a few instances I have created composites to best convey my experiences and conclusions.
What else can I bring?
I’m carrying my story,
this much-crumpled thing.
What else can I bring,
what humble offering
served as allegory?
What else can I bring?
I’m carrying my story.
—Rachel Hadas, “Stepping Stones”
Introduction
Nearly a decade has passed since my first night in the intensive care unit. Though some of the details have faded, I can still remember my fear, my heart racing and arms burning as I compressed a chest at the first code, and then, in the morning, before exhaustion overtook me, the knowledge that I’d found what I wanted to do. At first, I just hoped to learn the medicine, to recognize every potential presentation of a rare disease, abnormal lab value, and unusual physical exam finding. I saw family members at the bedside, but I did not let myself feel the fear and worry that rolled off them in waves. In truth, throughout the whole of my internal medicine residency, I barely paused.
Instead, I became the resident who didn’t let anyone die. People knew this. I was proud of it, and in many ways, I still am. Back then, it felt as though my job was to do whatever I could to keep a heart beating, whether that was another procedure, or medication to support failing blood pressure, or a stat page to anesthesia for an intubation, or a nick and a dilator and pressure and a catheter in the neck and an early morning call to the kidney doctors to start a patient on dialysis. When I talked to families during those harried days and nights, I didn’t ask questions. What was there to ask? I made declarations. “We’re doing the best we can,” I would say. I hoped that it was true. I wanted to do the right thing, and this was the way I knew how. “We’re doing everything.”
The technology blazed so bright that I could barely see beyond it. There were the standard advances I knew about but had never witnessed up close, like breathing machines for the lungs and dialysis to take the place of the kidneys, and the awe-inspiring idea that surgeons could cut an organ out of one person and sew it into another. Extracorporeal membrane oxygenation took damaged lungs out of the equation entirely by sucking blood from a patient’s body and running it through a machine that added oxygen and removed carbon dioxide. Those with diseases that decades ago would have killed them in childhood could outlive their life expectancies. To think that I could be a part of all that was remarkable.
But during those same years—so quietly that at first I barely noticed—something else crept in. As a second-year resident, I cared for an old man with severe anemia from recurrent bouts of bloody diarrhea. Specialists tried again and again to find out where in his intestines the blood was coming from. They scoped and they cauterized and they clipped, and yet day after day, my patient’s counts dropped. We ordered more blood transfusions, and still he grew weaker. Each morning I entered his room and leaned over his bed to place my stethoscope on his chest, and when I had finished listening, he would look up at me and ask if he could leave the hospital yet. I’d tell him he could not, because he had not stopped bleeding. He would nod and it seemed that he understood, but the next morning, he would ask the same question again. I would give him the same answer and tell him that I hoped it would be soon.
The days went by until one morning, my patient told me that he was done. You can’t be done, I thought. You’re still bleeding. But that didn’t matter to him. He didn’t want us to keep talking about new procedures and ordering blood transfusions. His arms were bruised from needle sticks. Every time we gave him a transfusion, his lungs filled with fluid and he felt as though he were drowning until we gave him another medicine to make him urinate so that he could breathe again. He was ninety years old, and he was only getting weaker in the hospital, not better. Even though I knew that, even though I felt a little nervous and guilty when I saw him each morning, I found his words unexpected and somehow insulting. So I tried to negotiate. I told him that I was sorry we had kept him from eating for so many nights, awaiting procedures that inevitably occurred late in the day and sometimes not at all. I could bring him some food from the cafeteria, I offered, anything he wanted. I needed him to understand that if he stuck with us a bit longer, then maybe we could make him better.
He didn’t want our kind of better. He missed his home and his bed and his television and the way it was quiet at night and the sunlight crept in through his bedroom window each morning. It wasn’t the house where he had raised his family, but still he had his chair in the living room and he had his books. So he shook his head no. He didn’t want anything from the cafeteria. He just wanted to leave.
Maybe he was depressed. I called the psychiatrists, half hoping that they would tell me he wasn’t able to make his own decisions. They spent a long while in his room, and when they emerged they were certain that my patient’s mind was entirely sound. He understood the consequences. He understood that he would keep bleeding and slowly become weaker and more anemic, and that eventually he would die from the blood loss. Surprised and frustrated by their determination, I filled out the discharge paperwork that sent him on his wa
y.
I went over our final set of conversations for weeks. The way I saw it, my patient had come in with a problem that we weren’t good enough to solve so he had decided to go home, where he would die. It was clear to me that we’d failed. I was surprised when, a few months later, a flower delivery arrived at the nurses’ station on one of the general medical floors. There was a vase of lilacs and with it, a note for me. It took me a moment before I registered the name and realized that the flowers were from my patient’s son. Certain I had done something wrong and anxious about what I would find, I opened the envelope. I learned that with the aid of a hospice team, my patient had lived out his final days at home, as was his preference. His son was writing because he wanted to thank the doctors who’d taken care of his father during the last of his many hospitalizations. He had spoken highly of us, it turned out. He knew how hard it had been for us to see him leave, and he was grateful that we had. I read the note again. I think that might have been the first time I’d heard from a patient or his family after a hospital discharge. I know it was the first thanks that I’d received, and all this for a decision that hadn’t even been mine to make. I took one of the lilacs with me and pressed it between the pages of the pocket-sized medicine text I kept in my white coat.
The memory of this patient and his son’s unexpected gift stayed with me. And as I returned to his story in the coming years, I began to see it in a different light. My elderly patient made the choice to leave the hospital so that he could live the way he wanted, for whatever time he had remaining. Was that a failure, as I had assumed, or a kind of success? What did those words even mean? As I began to look farther down the road, at the longer-term reverberations and repercussions of our decisions, distinctions that had once seemed so clear started to blur.
During those days of negotiation in my patient’s room, I had believed survival was all that mattered. Maybe that is the way it must be for doctors at the very beginning. But survival was just the start. There was an entire range of possibilities and outcomes beyond the stark life-or-death dichotomy. Sitting in outpatient clinic offices and at the bedside on the general medical floors, I found myself wondering what my patients might face after they left my care. I wanted to know how they would learn to adapt to new realities and whether they would regret the decisions they had made, or those that had been made for them.
These are the questions that ultimately fueled the stories in this book. In the years since my first overnight in the intensive care unit, I completed my internship and internal medicine residency and went on to a pulmonary and critical care fellowship. I am now an attending physician in the intensive care unit at the hospital where I was born. In this position, I am the one who makes decisions about diagnoses and courses of treatment, leads family meetings, and carries responsibility for my patients’ outcomes. Throughout the course of my training for this role, I have learned how to manage a ventilator, how to treat sepsis, and how to sort out the causes of renal failure. I have even learned to look at death, to be present in that moment when the body stills, and to feel the weight of that ending and not to look away. But what I didn’t learn during those same years is what comes after for those who do not die, whose lives are extended by days, months, or even years as a result of cutting-edge treatments and invasive technologies.
As medicine marches ever forward, theirs are essential stories to tell. Men and women with cystic fibrosis navigate adulthoods they never thought they’d live to see, the media-savvy turn to Facebook to look for kidney donors, some survivors of the intensive care unit struggle with post-traumatic stress while others live out their days tethered to ventilators in places called long-term acute care hospitals. Some of the people in this book are patients I cared for as a doctor, others I encountered as a writer. Each of them has been shaken by illness or injury, and none would be alive without the most current medical advances. Thinking about their narratives, it’s easy to get caught up in the brilliance and sophistication of medicines and machines, but the quiet moments that resonate with me have little to do with any of that.
What is perhaps most extraordinary about these stories is how ordinary they ultimately are. When we follow these men and women into their worlds, where the outcomes of our acute care decisions are lived, the science starts to fade. We are left simply with people, each of them trying to make their way through the unexpected burdens, trade-offs, and triumphs of survival.
1
You Can Stop Humming Now
Nearly halfway through my first year as a doctor, I became Facebook friends with a young man who was dying in the cardiac intensive care unit.
Sam Newman was twenty-eight years old and his heart was failing. When his doctors realized that he was too sick to be cared for in the New Jersey community hospital close to his home, they had started to make phone calls to surrounding hospitals, hoping to send the young man out to the nearest tertiary care medical center. I’m not sure how long it took for them to find a willing institution with the necessary specialists and an open bed. But what I do know is that one night that winter, an ambulance carried Sam Newman, his fear, and the vague hope of a heart transplant to the cardiac intensive care unit at New York Presbyterian Hospital, where I was in the midst of my cardiac ICU rotation. I had been a doctor for just shy of six months.
I wasn’t on call when Sam arrived. I was at home in my apartment, trying to sleep, but failing. I was so tired that year—an anxious kind of tired in which I could doze off despite being squished between strangers in the middle of a crowded subway car and miss my stop, but when I finally got into bed at night, all I could do was toss and turn. Those sleepless nights were so frustrating that I was half relieved when I saw my watch tick toward 5 a.m., because it meant I could officially wake up, get into the shower, and start readying myself for the day. That morning, when I arrived at the hospital, I took my place in the semicircle assembled outside one of the patient rooms to begin our daily ICU rounds. We always started with the sickest or most complicated new admission and finished with the patient who required the least of our waning energy, the person who had been in the unit for days and was simply awaiting a bed on the general medical floor or transfer to a rehab hospital. Sam Newman was both the sickest and the most complicated one on our list that morning, so the room we stood in front of was his.
The bleary-eyed intern who had admitted Sam overnight stood slightly forward, in the middle of the group. A few eager medical students clustered nearby, hoping to have the opportunity to show off what they’d memorized. A perky, well-dressed pharmacist was poised at attention, ready to block our inadvertent attempts to overdose our patients on antibiotics, potassium supplements, or sedatives. I took my place with the rest of the first-year doctors and our second-year supervisors in our uniform of white coats with yellowed collars, T-shirts, and rumpled scrub pants. We faced what seemed to me to be an impossible task of trying simultaneously to listen to our new patient’s history, place orders for the meds he’d need throughout the day, field corrections on the meds from the pharmacist, and tune out the noise.
Sometimes the background noise of critical illness was all I could hear. There was the strangely melodic crescendo-decrescendo do-do-do-do-do of the ventilator, the rhythmic staccato of heart rate monitors, the whooshing of the Zamboni-like vacuum that seemed programmed to clean the floor during the most emotional moments of a hushed family conversation. Every now and then a nurse would come by and pluck one of us interns away, to clarify a medication order or to transport a patient to a CT scan or even to declare a person dead. The best I could do, most of the time, was to hope I’d absorb the highlights. I’d been a doctor for nearly half a year, and I had almost forgotten what it might be like to hear a person’s story in its entirety. In its place, I’d learned to distill each patient into a set of check boxes on a to-do list called the Scut List that we would plod through over the course of the day. There was no before or after; there was just the Scut List and the tasks that we needed to finish before I
could go home. Narrative, like full nights of sleep, had faded into memory.
But that day I heard “twenty-eight years old,” and the beeping of the ventilators and heart rate monitors, the whooshing of the Zamboni, and the dank smell of human sickness all faded to the background. This patient and I were nearly the same age. And so even though my co-intern launched into our new patient’s history in the clipped tones and terse language we’d perfected throughout that summer and fall—“This is a twenty-eight-year-old man who was in his usual state of good health until one year ago, when he developed lower-extremity edema”—I found myself, for what seemed like the first time since medical school, actually listening and creating a story.
Sam Newman was putting in long hours as an investment banker when he started to notice that his ankles were swollen at the end of the day. He wondered if it was because he was spending too much time sitting. Or maybe it was from drinking. With all that stress at work, he had been going at it a little hard. He’d cut down on beer and get back on the basketball court if he ever found the time. But then the swelling got worse. He woke up in the middle of the night, sweaty and gasping for air as if he were suffocating. He had to sit bolt upright before he could breathe again. “His lower-extremity edema increased, newly accompanied by orthopnea,” my co-intern recited. Sam thought it might be panic attacks. The job was really getting to him. He must have been so scared, I thought as I stood outside his door that morning. A buddy at work told him he was fine and he should stop acting crazy, but gave him the name of a local doctor just in case. Sam waited a few weeks before finally squeezing in an appointment one morning. The internist must have assumed, as I would have, that this young guy with a demanding job was just stressed. He would have heard Sam’s story and nodded reassuringly. I imagined how he must have placed the stethoscope against Sam’s chest to listen to his lungs, casually at first, the way you do when you know it’s fine, fully expecting the lungs to sound clear. But instead of the strong, unencumbered breaths of a young man, he heard a crackling through his stethoscope, like the sound hair makes if you rub it between your fingers. Fluid had filled the lungs’ delicate air sacs. The doctor’s expression would have changed ever so slightly, his jaw tightening and the room going still.
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