You Can Stop Humming Now

by Daniela Lamas

  Each day on rounds that week, I had wondered if we should start with Mr. O’Brien or save him till last. I felt I was never able to answer his wife’s questions fully. With her continued fixation on her husband’s renal function and her entirely unrealistic certainty that he would one day come home again, she made me feel nervous and somewhat defensive. Although her husband appeared much the same as he had on my moonlighting shift those many months earlier—which is to say, dreadfully ill but alive—his kidney function had been slowly worsening. On one hand, I’d started to think of him as possibly immortal, but on the other, I knew that it was just a matter of time until another bleed or an infection threw off the strange equilibrium he had maintained for so many months.

  That afternoon, after pausing a few beats to assess the room, I took his wife aside. I tried to explain that her husband likely had yet another infection, or maybe he was bleeding somewhere, but whatever it was, he was too weak to fight it. This might be the last in the long line of insults to his body that had brought him farther and farther from the goal of one day getting home. I wanted to tell her that he was dying, but I found that I couldn’t say the words.

  As I stood there, momentarily silent, I realized that despite seeing Mr. O’Brien every morning, I didn’t really know anything about him. I had no idea what he had been like before he came into the hospital, whether he had a good sense of humor, what kind of work he’d done, or how he had spent his free time. I knew he had a daughter, because I had seen her visit occasionally, and I knew she brought cookies for the nurses when she came, but that was all. And his wife barely knew or had any reason to trust me—I was just the latest in a long line of doctors who had passed through this room. Now, with the monitors beeping to alert me to my patient’s dangerously low blood pressure, it felt far too late to start asking anything.

  His wife was looking at me. “There are medicines you can give him?” she asked, her words a mixture of a question and a statement. There were medicines. There are almost always medicines, I wanted to say, but her husband had not been able to breathe on his own or go outside or experience anything, as far as we could perceive, other than discomfort in months. Even if we could get him over this hurdle, what were we returning him to? “Yes, there are medicines. We can give him fluids and more antibiotics, and we can start meds that can raise his blood pressure,” I responded. These medicines, called vasopressors, act directly on the heart and are administered through a central line, a large catheter in the internal jugular vein. Like any medical intervention, the act of starting pressors can cause harm—placement of the catheter can be painful, there is a small risk of hitting the carotid or puncturing the lung, the meds themselves can result in irregular heart rhythms. And if we are serving only to prolong a death that is inevitable…Mr. O’Brien’s wife was looking at me expectantly. “We can start the meds for the blood pressure right now, but then he’ll need another procedure to put a big catheter in his neck. We’ll need to send him to the ICU for that.” I took another breath. There was more to say. “I’m worried that even if we do all of those things, we still won’t be able to make him better.” His wife did not pause. “Give him the medicine,” she said. His blood pressure was dropping, and fluid alone would not be enough to turn it around. So I did.

  By the end of the evening, we had decided to move Mr. O’Brien to the ICU. His wife followed behind the stretcher, carrying a small bag of clothes and her notebook. They had been in the hospital for nearly a year, and I was surprised she did not have more. A few days later, I learned, Mr. O’Brien died. His wife went home. Late that night, she called the ICU and asked to speak with the doctors who’d pronounced her husband dead. She had a request.

  The intern got on the phone. “Hello?” he said. On the other end of the line, Mrs. O’Brien spoke. “They say my husband died tonight, but I just…I’m not sure he’s dead,” she said. “Would someone check the morgue?”

  From time to time during my weeks in the RACU and in the months that followed, I thought of Charlie Atkinson. Learning what I had about the outcomes of chronic critical illness, I wondered if he had made it home. I envisioned him still in his room at Spaulding. Perhaps he had fallen prey to another infection, and I imagined him delirious once again, ventilator dependent and bedbound. When we had last talked, Charlie and his wife had given me their e-mail addresses. He had told me he hoped to get home by the fall, so that December I sent him an e-mail. I doubted that I would hear back, but after caring for Mr. O’Brien, it seemed somehow important for me to find out what had happened.

  To my surprise, Charlie wrote back soon afterward. He’d made it out of Spaulding, and although he continued to struggle with infections, weakness, and painful neuropathy, he was home.

  One evening the following week, I found myself in front of the Atkinson house, next to the wheelchair ramp Charlie’s family had installed prior to his return. The air was chilly in early December, and at 5:30 it was already dark outside. I felt a little odd standing at Charlie’s door at first, but I put aside my concerns when Jeannette greeted me warmly with a hug. She was thrilled that I could make it over for dinner, she told me, and Charlie was excited to talk with me. He was waiting in the dining room that they’d converted into a bedroom so he could spend his days on the first floor. She would take me to him.

  Back at Spaulding, Charlie had told me about the hospital bed he’d ordered from eBay. He was lying on it, not in a hospital gown this time but in a comfortable gray sweatshirt and shorts. A home ventilator sat next to his bed, with the tubing to connect to the tracheostomy in his neck. A urinary catheter snaked its way out of the pant leg of his shorts. As we talked, he cleared his throat frequently to bring the phlegm up through his trach. He couldn’t be alone and so had hired two live-in caregivers, a cabaret singer and a piano player from a local music school, who looked after him in exchange for room and board. Even so, there had been a scare with his trach one night a few weeks back, and a moment that he would not forget, when he wasn’t getting enough air and thought that he might die. But the emergency had been averted, and he was safe at home with his wife in the elegant Cambridge house where they’d raised their children and lived for decades. I could smell dinner cooking, and at Charlie’s behest, I followed tentatively behind him and his walker as we made our way toward the kitchen. Jeannette had prepared a full meal of roast chicken, asparagus, and rice. She poured me a generous glass of wine, and as we ate, warmed by the food and the wine, the conversation turned to chronic critical illness—the weeks, months, and even years some patients and families spend in the hospital, hoping for a recovery that might never come. Despite their year in this world, neither Charlie nor Jeannette had ever heard the term “chronic critical illness,” nor had they any idea of its associated prognoses. I felt as though I was inducting them into a strange club that Charlie had unknowingly been a member of since the day he’d undergone a tracheotomy.

  We finished our chicken, and while I talked, Jeannette started to clear our plates. I stood up to help but she gestured at me to sit down. I was the guest. From the oven, she brought out a freshly baked apple cobbler and carried it over to the table. I took a large piece and a scoop of vanilla ice cream. While our ice cream melted over the apples, I watched Charlie and his wife contemplate what I’d told them. It is easier, but perhaps neither fair nor fully honest, to consider chronic critical illness from this vantage point, in a family kitchen enjoying the familiar smells of chicken and apple and cinnamon. Perhaps as a result, Charlie’s response to me was not that he wished someone had discussed chronic critical illness with him when he was at Spaulding. Instead, he was pleased to find that he was even luckier than he had imagined. “Did you hear that, honey?” he exclaimed, turning to his wife. “Ten percent make it home!” I probed a little bit more. I asked Charlie whether he thought knowing about these outcomes might have changed his perspective during the winter when Jeannette was looking at nursing homes and he seemed to have reached a plateau. By way of response, Charlie t
old me that in college he had been a rower. He paused to clear his throat, as if to give me time to consider the unique combination of personal resolve, financial reserve, immense family support, and plain luck that had allowed him to get home despite those odds, more than a year after he had left the ICU. “I know how to put the oar in one more time,” he said.

  After dinner, Charlie and Jeannette said goodnight to me before heading to the first floor bathroom. It was time for Jeannette to suction the secretions from her husband’s tracheostomy tube before bed.

  Nearly a year later, I received another e-mail from Charlie Atkinson. It was a paperless invitation. He had been home one year, and he was throwing a party to celebrate. I decided to stop by and invited a friend who, I had recently learned, was one of the doctors who’d taken care of Charlie on his first day at MGH. She and her intern had struggled to perform a spinal tap, inserting the long thin needle between Charlie’s vertebrae to obtain a sample of his spinal fluid. He had been too confused and stiff to get his body into the right position for the test, which would have required him to curl his legs up to his chest in a fetal position to increase the space between the vertebrae. They tried multiple times before calling it quits. The neurologists came in next and finally succeeded, getting a sample of the fluid that would ultimately return a positive result for West Nile virus.

  At the party that evening, my friend told Charlie all of this and he listened, fascinated. He hadn’t heard that part of his story before, and he remembered none of it. She was intrigued, too, watching Charlie eat cheese and crackers, chatting with his son and buddies from college. After all, she had last seen him lying in that hospital bed more than two years earlier, spiking fevers, barely responsive. At that time she had imagined his likely outcome as death, or life with impairments so severe that he’d never make it home.

  For my colleagues and me, the time in the hospital when we intersect with patients like Charlie or Mr. O’Brien is generally all we know of their trajectories. Perhaps we see them if they get sick enough to return to the unit and if that readmission coincides with our time on service. But we rarely have the opportunity to follow them out through long-term acute care hospitals, infections, delirium, readmissions, and maybe, if they are very lucky, back home to a life that looks something like what they left.

  Charlie Atkinson and Mr. O’Brien passed through some of the same doors, but one was home and the other never made it out. When did they diverge? Perhaps there wasn’t one specific point but a slow progression, moment after moment, setback after setback. In hindsight, at the Atkinson home that night, I wondered how similar they really were. Both were chronically critically ill, yes, but perhaps Charlie Atkinson had never really been as sick as Mr. O’Brien was. Despite the encephalitis and the respiratory muscle weakness that left Charlie dependent on the ventilator, his other organs—his kidneys, his heart, ultimately his brain—remained intact, while Mr. O’Brien appeared, when I met him, to have fallen apart slowly, piece by piece.

  Charlie and Jeannette were in many ways exceptional; this much was clear to me. But still I wondered: at what point in the course of chronic critical illness do you know who is going to be Charlie—or maybe, who can be Charlie, with all the personal resources and trade-offs and simple luck that being Charlie requires—who is going to be Mr. O’Brien, and who will end up in the vast in-between? After my first dinner with the Atkinsons, I had posed this question to Judith Nelson, the New York City intensive care and palliative care doctor who conducts research on chronic critical illness. “I don’t know when it becomes clear if it isn’t going to be okay,” she had told me. “But at some point, it does, or something develops that’s unacceptable to the patient, like it’s clear they’re never going to go home. And so I think every day, you just keep weighing the benefits of continuing the treatments against the harms, every single day.”

  For someone else in Charlie’s place, that calculation might well have come out differently, particularly in the winter days at Spaulding when Jeannette was looking at nursing facilities and it seemed as though he might never make it home. But there he was, in his kitchen, gesturing to his son to take out his smartphone to videotape the event. I watched as a younger version of Charlie held up the phone in video camera mode and recorded his father working the crowd. Charlie leaned on a walker and still needed a urinary catheter, but his doctors had been able to take out his tracheostomy tube, and only a small scar on his neck marked his months of intermittent ventilator dependence. He looked good. My mind wandered. I imagined an evening at Spaulding, just a few miles away, where the ventilator alarms sounded, a patient called his nurse for suctioning, and a husband sat anxiously by his wife’s bedside. Then my thoughts turned to Mrs. O’Brien, and I imagined her on that same evening. Maybe she was eating dinner in the house she’d shared with her husband. After nearly a year of doctors, decisions, uncertainty, and hope, it was over. Her husband was never coming home. And she was alone.

  3

  Life on Battery

  His heart was failing. I imagine it was like this: His legs were swollen and heavy like weights. He was so tired. But when he lay down in bed, he felt he was drowning, and so he started to sleep propped up on the couch. He had taken all the medicines his doctors prescribed him, and they each helped a little, but they did not help enough. Van Chauvin was not afraid of dying but he did not want to go on living this way, suffocating in the night.

  And then his doctors told him about something else. Something called a left-ventricular assist device, nicknamed LVAD, or just VAD. They told him that the machine would work by drawing blood from a chamber of his heart and propelling it into his aorta—the main vessel that carries blood throughout the body—at a pressure high enough to keep him going far better than his failing heart could manage. A cable called a driveline would run from the device and out of his body by way of a hole the surgeons would create in his abdomen. He would have to take good care of this hole to make sure it didn’t get infected. A bad infection could kill him, they said. This cable would lead to a battery-powered “controller unit” that he’d wear on his waist, strapped to an elastic belt. If this device did not incapacitate him by causing a stroke or a bleed, it might allow him to walk comfortably again. He might be able to sleep in his bed. Though some people receive the VAD as a “bridge,” a way to stay alive while waiting for a heart transplant that might or might not come, Van had been a smoker his entire life, so he wasn’t a candidate for a heart. He might get on the list eventually, but if he didn’t, his VAD would be a “destination.” That’s how he would live until he died—battery-powered during the day and plugged into the wall to recharge at night.

  There is something about this machine that I have found fascinating since I first learned about it in residency. During an intern year elective, I spent time working with a cardiologist who studies mechanical devices that support the failing heart. I’d thought that I would become a cardiologist like my father, and though that idea didn’t stick, I remember that I was entranced by my attending’s clear explanations of the inner workings of the VAD, delivered in his crisp, German-accented English. Sitting in his office on one of the top floors of Columbia University’s medical research building, I held an early version of this device and passed the equipment from one hand to the other. It felt solid and sturdy, and if I had not known its purpose, I would have thought it just an unassuming piece of metal and plastic machinery.

  In some ways, it’s nothing more than another implantable device, much like an insulin pump for diabetics or a cochlear implant for the deaf. I know the heart is just a muscle, and I have held a cadaver’s still heart in my hands and felt its inanimate weight. Even so, I can’t help but believe that there’s something more to it all, some kind of meaning I can’t ignore in the fact that thousands of people today are staying alive by plugging themselves into a wall socket each night. This very conspicuous melding of human and machine has long struck me as a life at the edge, and this edge was one that even in the ear
ly days of my intern year I felt was important to understand. Of course, as a critical care doctor and not a surgeon, I’m never going to be the one implanting these devices. And I know that as time passes, these devices will become smaller, as devices do, the external parts will become internal, and one day the VAD might be no clumsier or more metaphorically powerful than a pacemaker. But there will always be another machine that goes one step further to bring us up against the limits of what it is to be mortal. And as a doctor who cares for people at these margins, I wanted to understand what it was like to live a life enabled by this kind of technology—not just amid the buzz of acute care decision-making, but after, when the reality set in.

  Van Chauvin trundled down the shiny white hallway of the cardiology clinic offices. The hospital can feel like a maze, but Van and his sister Donna, who’d accompanied him on the drive from their home in central Massachusetts into the city, had learned it inside and out. They had been here so many times—too many—ever since Van’s heart failed and his doctors implanted a VAD in his chest.

  He was slightly disheveled, hustling from one waiting room to the next in the camouflage-print hunting vest he had bought at Walmart some years back. These days, instead of carrying the fishing tackle he would have preferred, each vest pocket held one of two backup batteries to power his VAD. Even so, with his camo vest, burly frame, and graying beard, the sixty-year-old looked more like an aging outdoorsman than a heart failure patient dutifully toting the equipment that kept blood pumping through his body.