SHIFTSan 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— to 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.
Dr. McCormick spoke to Donna in a soft tone that exuded compassion and presence. “We are from the palliative care team, and we’re just here to get to know you and to support you as you think through some of the decisions your medical team is asking you to make,” Dr. McCormick said.
“I need . . . all the support . . . I can get,” Donna replied, her voice fading into a whisper as she made her way through her sentences.
Donna’s fatigue penetrated her every word and attempted action. Lifting a forkful of green beans to her mouth had become an accomplishment, she told us. She scratched her arms during our conversation, and dry skin flaked onto the blue hospital blanket. I had seen patients who looked as chronically fatigued and debilitated by disease as she did, but none who refused the therapies we offered, even when I wondered if they were strong enough to benefit from them.
Dread had consumed Donna on the ambulance ride from her dialysis center to the hospital. She told us she had felt her heart thumping against her chest as though it were warning her of impending danger. She knew her doctors would offer her another procedure or surgery to fix her fistula and allow her to continue dialysis. But a question surfaced in her mind, one she’d considered from time to time over the past several months: Would a shorter life without dialysis be better than a longer life with dialysis?
“I’m not suicidal,” she whispered. “I’m tired.”
She told us about the many ways that dialysis had enabled her to enjoy the past five years. She would miss her adopted daughter and the view of the Bay Bridge from her front porch. She would miss making her mother’s recipes for barbecued ribs and lemon tart. But she wouldn’t miss the crushing fatigue of kidney failure that had slowly deprived her of one independence after another: The ability to use the toilet in her Spanish- tiled bathroom. The pleasure of taking a shower alone, scrubbing herself with lavender body wash, standing rather than sitting in a plastic shower chair. The full sensory immersion in her garden, hands deep in the fragrant earth as she tended her marigolds and daisies, leaving behind imprints of her knees in the soft dirt.
“I am sorry this has been so tough for you,” Dr. McCormick said to Donna, handing her a box of tissues. “I hear you saying that dialysis has really helped you to live well and to enjoy your life, but I also hear that over the past year it’s really been making you tired and sometimes it’s even made you sick.”
“Yes, it has,” Donna said, pausing to catch her breath. Even crying wore her out.
“Have your other doctors talked with you about what stopping dialysis would mean?”
I held my breath, unsure exactly what Dr. McCormick was asking. Did he want Donna to say out loud that she knew she would die without dialysis?
“Honestly . . . they didn’t really . . . say too much,” she said, wrapping thin shreds of tissue paper around her right index finger. “What would . . . happen to me?”
“Well, the first thing you need to know is that it is okay for you to want to stop dialysis if it is not helping you to live well,” Dr. McCormick began. “But it is also very important for you to understand what would happen without dialysis. The toxins that dialysis usually removes from your blood would build up.”
“And then . . . I would . . . die?” Donna whispered.
“Yes, you would die from your kidneys failing,” Dr. McCormick replied. I had never seen a doctor tell a patient so directly that they would soon die. I’d seen well- intentioned doctors try to soften the blow of hard facts by cluttering their sentences with rambling apologies or canned reassurances, talking around the truth. Their worry that a patient might be unable to handle plainly stated facts, that they must require unnecessary words and sentiments as a sort of shock absorber, struck me as a form of paternalism. Dr. McCormick’s sentences, concise and compassionate, almost felt transgressive. I had never seen a doctor disclose a wrenching truth with acceptance rather than avoidance. His voice was steady and clear, free of euphemisms like “passing on” or “being at peace.” I waited for Donna to stop the conversation, to say that discussing death so openly overwhelmed her. But all she did was nod. It was as though Dr. McCormick had validated what she already knew, as if she found this statement of truth comforting. “But our focus would be making sure that you are comfortable and free of any suffering during that time.” He looked Donna in the eyes, placing his hand respectfully on her shoulder and nodding his head deeply to emphasize the last part of his sentence.
“How would . . . I suffer?” Donna asked, suddenly looking at me. Even though after years of studying I could tell Donna everything about how her kidneys work and what happens to her body when they fail, I hadn’t the slightest idea how she would experience
dying from kidney failure, or what medications could ease her suffering. My silence stunned me. I struggled to understand how I could be on the cusp of becoming a physician and lack the words to answer her question, to guide her through the one certain transition every patient of mine, every human being including myself, would experience.
“When you stop dialysis, one of the most common things that happens is that the fluid that dialysis usually takes out of the body can build up in the lungs, and you can have some difficulty breathing,” Dr. McCormick began, and Donna nodded. “So I would give you medicines to help prevent any gasping or difficulty breathing you might have.”
“Good,” Donna whispered, adding, “I don’t . . . want . . . to suffocate.”
“There are two medicines I will make sure we give you so that you don’t experience that awful feeling,” Dr. McCormick said. “The other thing that can happen is that the toxins that build up when you stop dialysis can make you confused and eventually sleepy. Usually this isn’t painful, but it can worry those around you.”
“I don’t . . . want pain,” Donna responded, and Dr. McCormick quickly reassured her that kidney failure generally doesn’t cause pain, and death would arrive only after loss of consciousness. Kidney failure, he told her gently, could be a very merciful way to die.
I had never seen this type of doctoring before.
As the conversation unfolded, I felt a knot in my stomach harden, realizing the enormous implications of Donna’s statements. Intellectually, I knew that patients could choose not to start a treatment or discontinue a treatment that wasn’t helping them, but I had never witnessed a patient say that their quality of life was actually worsened by a treatment intended to help them live.
“I’m ready,” Donna whispered. “I know . . . God is . . . waiting for me,” she whispered. Chaplain Ellen took Donna’s hand and asked her if she found solace in religion or spirituality. Donna nodded, whispering that she was a Christian, asking Ellen to pray with her. As Ellen read from the book of Psalms, Donna’s shallow breathing slowed, her face relaxing. “When the righteous cry for help,” Ellen read, “the Lord hears and delivers them out of all their troubles. The Lord is near to the brokenhearted and saves the crushed in spirit.”
“Thank you, sister,” Donna whispered.
The dying I had encountered prior to meeting Donna had been either sudden and unexpected (the result of a terrible car accident) or a failure of the most aggressive possible medical treatment (the man with advanced cancer who died after twenty- five minutes’ worth of CPR). In retrospect, I realize that these were examples of death
was a process I hadn’t been able to recognize during my years of medical school. I felt tears burn at the corners of my eyes and blinked them away, willing myself to stay composed. But I wasn’t sad for Donna. I admired her.
Here, at the very end of medical school, mere weeks before I became a “real” doctor, I finally saw what it meant to care for a dying patient.
A portrait of a person, in forty- five minutes. What emerged as I listened to Dr. McCormick’s conversation with Donna was different from taking a social history, a brisk collection of essential facts about a patient’s life that could impact their health: Who was part of their family? Where did they live? What did they do for work? Did they drink or smoke? Did they follow a specific religion? I had always taken pride in memorizing facts about my patients that helped me to understand who they were: their children’s names, their birthplaces, and their jobs. But those were still just facts, ones I collected earnestly because this felt like the closest I’d ever come to knowing my patients as people, seeing them as human beings, despite the ways in which medical training placed an increasing distance between us. This conversation with Donna was different. It was about understanding what truly mattered to her, and how she could make choices about her medical care that would privilege rather than sacrifice her priorities.
Up until this point, I’d come to believe that treating disease was the best way to alleviate suffering. The person and her disease collapsed together, the boundaries between the two ever more indistinct as medical school continued. But by unintentionally treating patients like a panoply of diagnoses, biological mysteries to be solved, I was losing sight of what had drawn me to medicine in the first place: the unique opportunity to become both a scientist and a humanist, translating book knowledge into relief of human suffering. The cumulative challenge of memorizing endless maladies and their treatments, rushing around the hospital to see patients and order lab tests and call consultants, the pressure to perform well, and the long hours in the hospital wore on me, even as the meaning I found in the work waned. During my palliative care elective, though, that meaning began to return. How ironic, I thought, that I began to find my purpose in a field that embraced what medicine sought to erase.
Over the next two weeks, I felt alternately uncomfortable and inspired, grateful to practice the type of medicine that felt genuinely humanistic, but also overwhelmed by the vast gap between palliative care and the medicine I’d been learning.
In those two weeks, Dr. McCormick taught me how to properly evaluate and treat pain and nausea, basic symptoms I realized I didn’t feel prepared to treat even though I was on the verge of completing medical school. When we could ease a patient’s cancer pain or shortness of breath from heart failure, some regained the ability to dress themselves or hold a comfortable conversation. Others slowly became strong enough to get more chemotherapy or enroll in a clinical trial. Dr. McCormick taught me the difference between hospice and palliative care: hospice isn’t a place, but rather a type of palliative care that teams of nurses, doctors, social workers, and chaplains provided to patients, often in their own homes, when they had less than six months to live. I took notes as I watched him lead family meetings, asking patients about how the realities of their diseases reshaped their hopes and goals.
I hadn’t considered that patients could have goals other than fixing a medical problem and returning home. I listened as a patient dying of pancreatic cancer told Dr. McCormick that she wanted to feel well enough to attend her daughter’s college graduation in two months. An elderly gentleman found the courage to tell us that appointments with his oncologist took up too many hours of his waning life; he’d rather be at home with the family he loved than driving back and forth to the oncology clinic, spending hours in a cushioned chair as chemotherapy dripped into his veins. Though many of the patients I cared for were dying, we spoke mostly of their lives, of what it meant to live well in the time they had remaining.
Several days before the end of my rotation, I met Julia, a woman in her fifties with end- stage breast cancer who couldn’t lie on her back because the cancer had eaten through half of her spine. Even when Dr. McCormick and I adjusted her pain medications so that she could finally sleep, the night- shift nurses left notes in her chart observing her to be “awake and alert” and “complaining of insomnia” at three a.m. I asked her what was troubling her, and she told me, “I am just not ready to leave my daughter and my granddaughter. There’s too much I have to tell them.” I listened, nodding, but unsure what to say. I realized once I’d left her room that the version of myself before medical school might have been more capable of empathizing with her as a woman on the cusp of great loss, rather than looking upon her as a patient dying of breast cancer. The irony of this unconscious trade- off— y ability to relate to her human emotions in exchange for the professional distance of medical expertise— eft me ashamed. As I took the elevator back down to the room where our team discussed patients, I wondered what other parts of myself I’d lost or forced into dormancy over these past few years.
Hours later, when our team sat together and talked about each of our patients, I described my conversation with Julia and turned to Dr. McCormick, suggesting that maybe we could increase the dose of her sleep aid. Ellen wondered aloud if there was something else we could do for her aside from prescribing a medication to help her sleep. “Have you ever heard of legacy work?” Ellen asked me, explaining that people often want to leave messages or remembrances or expressions of their love for those they will leave behind. Sometimes, people write letters that loved ones open on a specific event such as graduation or a wedding day. Others make videos recounting their love for a spouse, or use paint and posterboard to leave a grandchild turkeys or hearts made of their handprints. I had never heard of legacy work before, but it struck me as a vital tool to attend to patients’ emotional landscape, to help them mine their lives for meaning.
I returned to see Julia several hours later with Ellen, a tape recorder in her hand, and a notebook and pen in mine. “Which do you want to use to tell your family what you need to say?” I asked, as we both explained that we had the tools to record her voice or to serve as her scribe.
She did both. Her voice, alternately strong and broken, for her granddaughter. Her words in my handwriting on lined journal paper for her daughter. She read my letter twice before she signed it in shaky cursive, folding and pressing it against her heart. “Thank you,” she said, “for helping me leave a piece of myself for my girls.” That afternoon, I’d done nothing that specifically required medical training, but Julia slept well that night, waking up only once.
Both Donna and Julia died. Although she had hoped to die at home with the support of hospice, Donna became confused and then slipped into unconsciousness three days after we met her. Dr. McCormick said she might not survive the ambulance ride home, so we cared for her instead in her hospital room. We covered her with extra blankets when she shivered, and wrote orders to stop nurses from waking her to take her blood pressure and temperature every six hours. Her comfort became our most important vital sign. We stopped by her room several times a day, carefully adjusting doses of her medications to ease her shortness of breath, confusion, and pain. Her family tied balloons to her bedpost and surrounded her with photographs of people who loved her. They encircled her and sang, the melodies of hymns fractured by their tears. She died in the middle of the night shortly after her family left, alone in a quiet but peaceful room.
Julia took her letter and tape and went home with hospice care. Several weeks after my rotation ended, I ran into Ellen, who told me that Julia’s family had written a thank- you note to our team. “I think that letter and that recording gave her some real peace and helped her feel that she could finally let go,” Ellen told me.
What I learned from Dr. McCormick and Ellen was so distinct from what I’d learned and experienced in medical school that I wondered if it was “real” medicine. The medicine I’d learned was fast aced and lifesaving, an enterprise that relied on plastic catheters and ultrasounds, operating rooms and endoscopy suites, a rainbow of pills for diabetes and high blood pressure, saline and antibiotics that coursed through the body from bags attached to an IV pole. The effort to extend life left no space for accepting death.
Still, I left the rotation drawn to palliative care and haunted by the patients for whom my new knowledge came too late. This shift in focus, the inspiration I sought, had everything to do with what I hadn’t learned in medical school, with what wasn’t modeled for me rather than what was.
What was it about this negative space, about learning to articulate the unsaid, that called to me?
When I look back on those two weeks, I realize that I did not do for my patients what I had been trained for years to do: I did not diagnose or fix their ailments. They didn’t live for more than days or weeks after I met them. But it is not their deaths that I remember. It is the peace they found in the honesty we offered, in the opportunity for them to articulate their suffering and what they wished for in the time they had left. My acquisition of a particular language, and my shifting relationship to empathy and truth, nagged at me even when I tried to convince myself that I couldn’t possibly do what Dr. McCormick did every single day. During those weeks, I’d felt both human and humane, like a person and a doctor rather than one or the other. I couldn’t dispute that I’d left my rotation feeling the closest I had felt to the doctor I always wanted to be.
Copyright © 2019 by Sunita Puri. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.