You Can Stop Humming Now

by Daniela Lamas

  The administrator came in a moment later. I think of him now as a tall man in a stereotypically sleek suit. We made small talk about the second year of residency and the beauty of those early summer days in the city before the air grows humid and still. I ate a couple of the jellybeans, sticky now in my hand. Then the hospital administrator told me he wanted to talk about my piece. First there was the whole Facebook thing. The hospital would now have to think about a policy regarding patient and doctor Facebook friendship. And not only had I followed my patient on Facebook; I had then looked at his online medical record—accessed his protected health information, that is—when I was no longer taking care of him. That would be understandable if it were for clinical care or for research, and even then only with the appropriate approvals, of course, but my actions seemed to have been driven more by curiosity than by anything else. That didn’t deserve formal censure, he told me, but it had raised some eyebrows. Ultimately, he hoped that if and when I wrote again—and he hoped I’d continue to write (I nodded appreciatively)—I would clear the content with him beforehand. I kept nodding.

  What he said was true. I had accepted a friend request, and I had indeed followed my patient’s course from the intensive care unit to the general medical floor and back to the unit again, all through his online notes in the electronic medical record. I had wanted to know what had happened to him. I hadn’t questioned that drive at the time, but sitting in the executive suite that day, I started to feel uncomfortable. It was curiosity plain and simple, and maybe that curiosity had crossed a line. Perhaps when my ICU rotation ended and my patient was no longer my responsibility, that’s when my interest should have ended as well.

  Back in medical school, I took a course in what’s called “narrative medicine.” The premise is that understanding the very human arc of our patients’ personal histories helps us to become better doctors. We went on a field trip to the Metropolitan Museum to look at the artwork, and we stood in front of pieces like The Death of Socrates and an ancient marble statue of a wounded warrior, in the hope that exposure to creative renderings of suffering might deepen our understanding of the human experience of illness. I liked the idea. I had worked as a health reporter before medical school. A good reporter tells stories, and so I thought it was natural that I would weave an understanding of my patients’ narratives into the care that I delivered. As we wandered through the Met, I thought of myself in a vague fashion, as if in some kind of impressionist painting, accompanying my patients through illness as a guide and a friend. But after the tour through the museum, we didn’t think about art or suffering. Instead, we went to a nearby bar and downed shots and played beer pong.

  The next day, fuzzy and bleary-eyed in the lecture hall, we laughingly blamed narrative medicine for our hangovers. But still, I quietly wondered if there was something to it all. Maybe I didn’t need to contemplate the art at the Met to do so, but I wanted to grow into the kind of doctor who recognizes her patients’ humanity and responds with a little of her own. This version of me would always ask questions that probed each patient’s fears and individual goals. I would never perform a procedure, no matter how minor, or prescribe a medication without explaining its purpose. I would never hold down a patient’s arm, leaning in with all my weight, to draw blood. I would never walk in on a patient while she was on the commode and apologize but then proceed to listen to her lungs while she sat there. I would never say that I would return in the afternoon to answer questions and then not come back until the next day.

  But that wasn’t how it happened. I have done all of these things, not just once. It seemed that my job as a doctor in training was to accomplish the task at hand quickly and quietly, and without disrupting the flow of the work by asking too many questions. To do that successfully, I needed to grow accustomed to a system that prized efficiency, often at the expense of following my patients’ stories. When I moved from the classroom onto the medical wards, I had learned that the social history—asking where the patient lived, with whom, did he own a dog, did she do drugs, what did he do for work—was fun to talk about, sure, but it was ultimately unnecessary. By the middle of intern year, I’d started to cut and paste the social history from a patient’s prior notes whenever I was rushed or tired, which was most of the time, sometimes without even reading the words. It felt burdensome to ask the same questions over and over again. Moreover, the answers barely seemed to matter, since my role reached its natural end when my patients left the ICU or the hospital or the doors of my outpatient clinic.

  And there in that administrative office, I was being chastised, first for crossing a line with that friend request and then for wanting to know what had happened to my patient afterward. I apologized, suddenly ashamed of a curiosity that seemed dirty. That was all I needed to hear. I didn’t have to look at my patients’ records once I was no longer responsible for their care. I had little time to do so anyway. There was always so much to get done. Just then my pager started to beep, a shrill and insistent sound that called me back from my contemplation, into the present. “I’m really sorry,” I said, gesturing at my pager by way of explanation. “I have to go.” There was a sick new admission waiting for me in the Emergency Department. I slung my stethoscope around my neck, gathered my papers, and didn’t look back.

  2

  Ten Percent

  One Saturday, a few months into the critical care subspecialty training that had taken me from New York City to Boston, I signed up to moonlight in the Respiratory Acute Care Unit, which we refer to as the RACU, at Massachusetts General Hospital. There, I would be paid eighty dollars an hour to take care of patients who had survived an intensive care unit stay but hadn’t recovered. These patients typically can’t breathe without a ventilator. They are prone to infection and are often delirious, slipping from agitation to stupor. Too “stable” to require the moment-to-moment monitoring of the ICU but too sick for a general medical floor or a nursing home, these patients end up in a separate unit in the hospital, the RACU, where they remain for weeks to months. I thought of this place as purgatory. But I had a free weekend, and on a fellowship salary I’d learned not to look askance at a moonlighting shift, particularly one that would reward me with extra money for work done during the day instead of overnight.

  There were ten patients on my list. One of them, George O’Brien, was a seventy-five-year-old who hadn’t left the hospital in nearly a year. He had initially come into the ICU with a severe infection that had caused his blood pressure to drop so low that his kidneys failed. Recurrent pneumonia from resistant bugs that lived in the hospital had devastated his lungs and sapped the strength he needed to be able to breathe on his own. According to the notes I read before my shift, there had been a single day about two months before when he’d actually been ready to leave the hospital. Some benign issue had postponed his discharge that day, and the rehab facility agreed to hold his bed for twenty-four hours. But the next day there was another blip—his kidney function had worsened or his blood counts had dropped—and so once again, he stayed in his hospital room. Then, it appeared to me in retrospect, the window of possibility had closed. More than three hundred days had gone by, and Mr. O’Brien had never left. It seemed he never would.

  Once I finished my background reading, almost a year of life compressed into a few paragraphs and a list of infections and antibiotics, I jotted down Mr. O’Brien’s overnight vital signs and approached his room to begin my morning rounds. A sign on the door announced that he was on “contact isolation” because he was having diarrhea that might have been due to clostridium difficile, a particularly contagious infection that can run rampant in hospitals and nursing homes. I pulled a yellow contact isolation gown over my weekend garb of scrub pants, Converse sneakers, and fleece jacket, and grabbed a pair of purple gloves. Prepped, I entered the room. Mr. O’Brien was lying on the bed, so still that at first I couldn’t tell if he was even alive. He had a person’s form, with its component parts of arms and legs and body and face, but
he looked depleted, as if drained of some essential vitality. His eyes were half closed. His chest rose and fell with the ventilator. His legs were swollen, and yellow fluid trickled like tears from small blisters on his shins. The room smelled of talcum powder and antiseptic and bodily fluid.

  When I leaned over the bed and laid the cold stethoscope on his chest, Mr. O’Brien didn’t move. It was only then, as I stood over him, that I registered his wife, who was sitting silently on a chair in the corner of the room. Of course she was there, I thought. I had been told that she had been living in the hospital for the past three hundred days, too. She was a tall, thin woman whose skin and hair and clothes seemed to have faded to the same dull shade as the walls of the room. She watched, wordless, as I examined her husband. “Good morning, Mr. O’Brien,” I said loudly with exaggerated cheer. He didn’t react to my voice. “Mr. O’Brien?” I rubbed his shoulder. There was still no response. Months of critical illness and a few small strokes had left him in a stupor. When I moved his arm, he grimaced. (“Grimaces to pain,” I would write in my daily note.)

  I startled when I heard his wife’s voice. “What are his blood counts today, Doctor?” She spoke in a clipped tone. I wondered if I should make small talk, ask her about the lives she and her husband had lived before they had ended up in this room, but I was only there for the day, and she didn’t seem in the mood for conversation. Thankfully, I’d already scanned through her husband’s labs, so I had enough information to reply, if not to satisfy her.

  “That is lower than yesterday,” she said, picking up a pen and a little composition book in which she must have been writing down her husband’s daily lab values. Something about her words surprised me and left me feeling, oddly, guilty. I touched her husband’s legs, pushing the tip of my finger into his shin to test the depth of his swelling. The fluid gave way, and when I removed my hand, my finger left a dent. His wife was watching me. “Does he need a blood transfusion, Doctor?” He did not; his blood counts were indeed lower—likely due in some small part to our daily rituals of drawing blood to check said counts—but not yet low enough to require a transfusion. “And his kidney function today, Doctor?” It was poor. His body was still able to make urine on its own but not well enough to rid him of the excess fluid in his stomach and lungs and legs. I could still see the shadow of my fingerprint on his shin. “No change since yesterday,” I told her. “Good,” she replied, seemingly relieved. It wasn’t good news, though, not really.

  I looked at her husband for a moment, wondered if he hurt and hoped he did not, before wishing him a loud goodbye, tugging off my gown, dropping it in a bin along with my gloves, washing my hands, and leaving the room. It was time to move on to the next patient, a seventy-year-old woman with emphysema who hadn’t been able to breathe on her own since an open-heart surgery. Unlike Mr. O’Brien, who was too sick to respond, she was awake, but like him, she, too, was connected to the ventilator via a surgically placed hole in her neck called a tracheostomy. As a result, she was unable to speak, and as soon as I walked into the room she started mouthing furiously.

  “Hi. I’m Daniela. I’m the doctor on for the day,” I introduced myself, straining to make meaning out of her moving lips. “Okay. Try to talk slowly. Are you in pain?” I asked. She shook her head, an emphatic no. I leaned in toward her, thinking maybe I would be able to hear the words in her breath. “Do you want your nurse?” Her mouth kept moving unintelligibly. “I’m sorry. One more time?” Again, she opened her mouth. She looked like she was screaming, but the air passed through the tracheostomy and into the ventilator tubing, bypassing her vocal cords and rendering her voiceless. Lipreading would be easier if she had her dentures in, but her mouth had shrunk such that they didn’t fit any longer. “Maybe you can write?” She nodded. Okay, I thought. This might work. I passed her a piece of paper, a pen, and a tissue box to lean on while she wrote, but her hands were so weak that she could only make faint and ultimately undecipherable lines. When the pen slipped out of her hand and rolled under the bed, I tried to give it back but she shook her head. I had actually made her more frustrated, I still didn’t know what she was trying to say, and everything was taking far longer than I intended. I leaned in again. This time I saw her lips move in a familiar motion. “You said, ‘I want’!” I announced, suddenly triumphant. She nodded. “What do you want?” I watched the lips close and purse to make the W sound again. Two syllables. “Water? Do you want water?” She nodded. Yes! She wanted water. I scanned the information on my patient list. Of course she couldn’t have water. She was weak and could easily aspirate, allowing the water to slip into her lungs. Her eyes hadn’t left my face. She was getting fluids through a vein, so she was not dehydrated, but she must have missed the taste of a cold drink. I braced myself to disappoint. “You can’t drink water. It’s not safe,” I said, as gently as I could. “I could have your nurse swab your mouth.” No. That wasn’t what she wanted. “I’m really sorry,” I said, the same empty words that must have been offered tens of times already. I saw her eyes tear up and wanted to look away. I examined her then, stethoscope over heart and lungs, hands on belly and legs. She watched wordlessly, with her eyes fixed on me, until I left the room.

  As I rubbed my hands with Purell in the hallway, one of the nurses walked by. She was a motherly woman somewhere past middle age in pink scrub bottoms and a matching pink flowered scrub top. I had heard her earlier that morning talking to some of her patients, and even to those who were too delirious to respond, people she could have just turned and washed without a word, she explained what she was doing, gently and respectfully. She touched me on the shoulder. “You’re with us today in this crazy place, baby?” she said with a smile. “Sure am,” I replied, looking at my watch. Two hours had passed already. But who was counting? “For the next ten hours, anyway.” She was holding a few large pills and a plastic bag of the thick whitish slurry that took the place of meals for the patients who received their nutrition through feeding tubes. “There’s a feast in the back room. Go help yourself, and don’t miss the coffee cake! That’s my recipe.” I love coffee cake, particularly when I am working, stressed, or tired. I walked to the small back room at the end of the hall, which smelled deliciously like butter. She wasn’t kidding. It was quite a spread. Suddenly ravenous, I cut myself a generous piece of coffee cake and ate it in a few bites. I poured a glass of orange juice to wash it down, savoring the cold liquid before I returned to the next patient on my rounding list.

  Time passed slowly. On the weekend, as a moonlighter without any long-term knowledge of, or responsibility for, the patients or families, I had to maintain the status quo. We move delicately, as if afraid that if we jostle the fragile equilibrium, it’ll all come crashing down, and 7 p.m. will come and go and we’ll never get home. The patients are desperately ill, but most of the time they are not in any imminent danger. This is a strange feeling, disconcerting and at the same time somewhat dull.

  In many ways, that dichotomy embodies chronic critical illness. The seemingly oxymoronic phrase was coined in the 1980s to refer to patients like Mr. O’Brien, who have lived through an acute critical illness like sepsis, stroke, or trauma, but who have not yet recovered and perhaps never will. There are about one hundred thousand such people navigating this limbo of protracted sickness at any one time. Chronic critical illness is defined first by the inability to breathe without the aid of a ventilator and the resultant need for a tracheostomy tube, which offers a more stable, longer-term connection to the breathing machine. But these patients also suffer from a range of related problems—they have impaired immune systems that predispose them to infection after infection, and they are profoundly weak and delirious. Kidneys fail. Skin breaks down, leading to ulcers. In essence, nothing is working as it once did. Half of these people will die within a year. Only around one in ten will ever make it home in a state in which they are able to live independently.

  Chronic critical illness isn’t something we like to talk about. This shouldn’
t be surprising. I was drawn to critical care medicine because of its amazing technology and my desire to be part of something lifesaving, not because I wanted to know what it looked like afterward, when our interventions had successfully averted death but not in the way we had hoped. Chronic critical illness, as the name suggests, is all lingering and suffering. And so even though I had taken care of many ICU patients who would end up in this borderland, in both my residency and my fellowship, and had even been an integral part of the decisions that led to those outcomes, chronic critical illness as a result of intensive care wasn’t something I had thought much about when I decided to become an ICU doctor. In fact, I hadn’t even heard the term “chronic critical illness” until partway through my fellowship. I certainly hadn’t ever discussed its manifestations and prognostic implications with families.

  About a month before that Saturday shift, I had cared for an elderly man who had been admitted to the hospital with the flu, which had sparked an acute worsening of his emphysema. His lung disease was so severe that we had to dose him aggressively with intravenous steroids and sedate him deeply just to allow the ventilator to do its job. It was hard to imagine how he might survive. And yet, after nearly two weeks, he’d gotten better. We were decreasing the doses of his steroids. He was waking up. But he was so weak that he could barely raise his arms off the bed, and he didn’t have the muscle strength to breathe on his own. And so it was time to talk about a way to connect him more permanently to the ventilator, with a tracheostomy tube.