You Can Stop Humming Now

by Daniela Lamas

  This is a relatively minor surgery, so minor that for some patients it can be done at the bedside rather than in the OR, but it is meaningful in that it often marks the transition from acute to chronic critical illness. Like chronic critical illness itself, this isn’t something we talk about. Take any one of a dozen scenes from any one of a dozen television medical shows. Doctors rush a man on a gurney into the ER. He is barely breathing. The music swells. “We’re going to need to intubate!” someone yells. Equipment appears as if by magic. A doctor takes her position at the head of the bed. Someone grabs the patient’s chin and thrusts it up so that his neck is flexed. The doctor places a curved piece of metal called a laryngoscope into the patient’s mouth and sweeps the tongue to the side until finally she sees the telltale V-shaped white bands that form the vocal cords. Someone passes her the plastic endotracheal tube. She advances it. The tube is in. The music slows. Disaster is averted. Cut to the next scene. After a commercial break, the patient will be ready to breathe on his own once again.

  In reality, the vast majority of those who require the ventilator, say for a pneumonia or severe flare of emphysema, do indeed get better quickly enough to breathe on their own after a few days, at which point we remove the tube. But for some, this isn’t the case. Days pass, and still they remain unable to breathe without the machine. Breathing tubes placed through the mouth aren’t designed for long-term use. They’re intrusive, and patients often require high quantities of painkillers and sedatives to tolerate the discomfort they cause. Moreover, if left in place for weeks, a breathing tube can damage the vocal cords. This is why, when we come up against the two-week mark, we begin to discuss tracheotomy. Patients with a tracheostomy tube might ultimately get strong enough to breathe and eat on their own, but not at first. So the tracheotomy is often accompanied by another procedure done on the same day by the same surgeons, which is the creation of a hole in the stomach to fit a feeding tube called a percutaneous endoscopic gastrostomy tube, or “peg.” We say the words together so often they’re referred to in one breath—“trach-n-peg”—or, as I’ve more recently heard, consolidated to a single syllable: “treg.”

  These procedures could represent a key decision-making moment, a pause to consider what someone might be willing to go through in order to gain more time and what sort of life a patient might consider acceptable, but in my experience, we rarely acknowledge it as such. In this recent case, as in so many others, I met with my patient’s wife and their son in a small, windowless conference room outside the ICU and laid out the situation.

  “Do we have a choice?” his wife asked. She wanted to tell me a little bit about her husband. He was active in his temple community. He was eighty, but that man was the life of the party, the kind of guy who danced on the tables.

  I told her there was a choice. We could take him off the ventilator.

  “Won’t he die?” she asked me.

  “Maybe,” I told her. I thought of how weak he was, how even with brief trials off the ventilator his breaths grew rapid and shallow. “We would make sure that he is comfortable.”

  “And if we choose this surgery, will the tube ever come out?”

  “We hope so. That’s our goal,” I said. “But we don’t know.”

  Perhaps that’s where I could have done things differently. Judith Nelson, a critical care and palliative care doctor and researcher in New York City, tends to use the words “chronic critical illness” when she is talking to families about these decisions, and she tells them it has a prognosis worse than some cancers. Few have ever heard this term, so she gives them the language to think beyond the individual procedures and turn this nebulous state into a diagnosis. It’s not that she wants to dissuade family members from pursuing aggressive interventions. Her goal is to explain the possibilities of what life might look like moving forward, so that the decisions people make—not just the decision surrounding trach, but also the countless choices, some smaller and some bigger, that likely follow—can be as well-informed and realistic as possible. “People are willing to play very long odds, and I do want to support that,” she told me. “The question is how to at once let them get the full benefit of intensive care and all its promise and still protect them from a really bad end.”

  When I returned to my patient’s room the next morning, his wife told me that they had made their decision. They would go ahead with the tracheotomy. There was an opening in the OR schedule, and my patient came back to the ICU with a trach and peg later that afternoon.

  I found myself replaying that conversation as the hours of my weekend RACU shift ticked by, punctuated by pages and trips to the back room for one more slice of coffee cake. Last I had heard, that patient was still in the ICU, battling a new pneumonia. If he got through that infection, he, too, would probably be transferred to the Respiratory Acute Care Unit, where I might see him on another moonlighting shift. But what would come after? I wondered whether his wife had understood (if it was even possible for her to understand) what she was signing up for when she agreed to the trach. Looking around me that day, I wondered if any of the patients and families I had ushered into the worlds of trach tubes and ventilators had known that it might be like this. And if they had, would anything about their decisions have changed?

  One of the difficulties of communicating about chronic critical illness is that the course doesn’t always look like Mr. O’Brien’s. It often does; there is a slow decline punctuated by infections, delirium, and organ failure. But there are outliers, too. For all the likelihood of turning out like Mr. O’Brien, there is also the possibility of another story, that of a man named Charlie Atkinson.

  When I first met Charlie one spring afternoon, he hadn’t been home for nearly nine months. In a stroke of amazingly bad luck for the social, athletic seventy-six-year-old, a bite from a mosquito at an early evening outdoor cocktail party had left Charlie with a severe case of West Nile virus. The virus nearly killed him, but after weeks in the ICU he had emerged—alive, yet unable to breathe without a ventilator. West Nile had resulted in a poliolike paralysis that meant Charlie couldn’t move his arms or legs. He was delirious. He underwent a tracheotomy and placement of a feeding tube, and was eventually transferred from the ICU to the RACU, where he spent another few weeks. At that point, by some parameters Charlie was well enough to leave the hospital. After all, his labs and blood pressure were stable. But barely able to move even a finger, tethered to the ventilator, responsive to his name but little else, Charlie couldn’t go home. So from the RACU, Charlie was transferred to another kind of hospital, one specifically for patients who were still sick enough to need ventilators or tracheostomy tubes, but not so sick that they required the monitoring and nursing intensity of an intensive care unit or even the RACU. This is a hospital that families like Charlie’s and many doctors, particularly doctors in training working in traditional hospitals, have never set foot in, called a “long-term acute care hospital,” or LTACH.

  Back in residency, when I was called upon to explain an upcoming LTACH transfer to a family member and trying to stay positive, I generally described it as “going to rehab.” I suspected this gave families the hopeful and likely mistaken idea that their vent-dependent delirious loved one would end up on a treadmill, but I really wasn’t certain what else went on in such a facility. Nearly a year into my fellowship training to be a critical care doctor, I still had never entered an LTACH. But I knew that if I hoped to discuss with chronically critically ill patients and their families what might be ahead, I would need to better understand what the next step looked like. So one spring day, I made the same trip many of my patients had, from MGH to our hospital-affiliated LTACH, the Spaulding Hospital for Continuing Medical Care. I hoped to find some patients or families who were willing to tell me a bit about what their lives were like there.

  I wasn’t sure what to expect and was surprised to walk up to a pleasant-looking brick building off a tree-lined road in a quiet, largely residential part of Cambridge, just minu
tes from the youthful pulse of Harvard Square. There was an ambulance bay around the side, but the front entrance looked to me more like a nursing home than anything else. The lobby was small and disquietingly still—entirely unlike the buzzing hospital lobbies to which I had grown accustomed, with their overhead alarms and doctors reaching for their ringing pagers and the click of heels on tile floor. The elevator was ponderously slow, yet no one seemed to mind. When it finally deposited me on the third floor, where most of the patients who needed ventilators were roomed, the first thing I noticed was the sound. It was reassuringly familiar; I was in a hospital, after all. There was the jarring, intermittent beeping of the ventilator and heart rate monitors, doctors and nurses talking about their patients’ lab values and how someone needs a CT scan and who is going away for the weekend and what they should get for lunch and whether ten in the morning is too early to place the food order. Stacks of yellow isolation gowns sat outside the rooms, and the halls smelled of stool and antiseptic and powder. In this way, it was like an intensive care unit. But I felt a sort of fatigue here, too, a sense of tired resignation to an undesirable set of facts. If progress were to come, it would take weeks to months, not hours or days. Time begins to expand in the move from the intensive care unit to the RACU, and here, it seemed to have slowed even more.

  I walked up and down the main hallway on the vent floor, peering into a few of the rooms only to stand, uselessly, in front of patients much like Mr. O’Brien, who weren’t able to respond. I was starting to wonder if I should just leave—not only was I suddenly overwhelmed by the feeling of exhausted sadness that surrounded me, but I was frustrated by my inability to find someone who might be able to talk—when one of the Spaulding doctors directed me to Charlie Atkinson’s room. I peered in. Even diminished by the hospital bed, Charlie was clearly a tall man, with a thick head of gray hair and distinguished, patrician features. And he was awake and alert, his eyes bright. “Come in,” he beckoned as I paused in the doorway. That April morning, he wore a hospital gown, compression stockings, and an insulated glove on one of his hands. West Nile virus had left him with nerve damage, and he’d found that keeping the hand warm was the one way to diminish the shooting pains. Although he was breathing on his own through his tracheostomy tube during the day, he still needed the ventilator overnight. Behind his bed were the usual suction catheters, wall hookups for oxygen, and IV poles. A collage on the windowsill showed pictures of a debonair gentleman with his college friends at Harvard reunion events and smiling with his family.

  As I stood by Charlie’s bed to introduce myself, he started to cough. It was a deep, throaty sound, somewhat jarring even for the ears of a doctor in the midst of critical care training. His eyes began to tear as he worked to bring up the phlegm and cough it out through his tracheostomy tube. I felt a twinge of discomfort myself, and was looking toward the suctioning equipment behind his bed when his wife, Jeannette, a slight woman who moved quickly with a competent air, walked in. Without skipping a beat, she pulled on a pair of gloves, slipped the cap off her husband’s trach tube, took the suction catheter from the wall, and fed it down Charlie’s trachea. He coughed and gagged, face turning red, then purple. Seemingly unshaken, Jeannette withdrew the suction catheter and with it the grayish culprit plug of mucus. She capped the tube. Charlie stopped coughing. Husband and wife turned and looked toward me, and I repeated my introduction to Jeannette while she removed her gloves. “Do you want to go down the hall to talk?” she asked. “That sounds great,” I replied. I would return to talk with Charlie later.

  Jeannette and I walked out of the room and down to a few chairs set up at the end of the hall. From the window, I could see the parking lot. The snow had finally melted and the trees were starting to bud. When Charlie had been transferred to Spaulding from MGH, his wife told me, she’d had little idea of what lay ahead. She was simply relieved that he had survived. “The intensive care doctors were pleased that he’s alive and he’s going to rehab, and isn’t that great. I felt pleased, too,” she said. But when he got to Spaulding, Charlie was still delirious and so weak that he could barely move. He still needed the ventilator off and on. No one mentioned the term “chronic critical illness,” but a few months into his Spaulding stay, Jeannette was told that Charlie had reached a plateau, and his doctors at the LTACH started to encourage her to look at nursing homes, which we call skilled nursing facilities (or SNF, pronounced sniff). I had asked one of the doctors at Spaulding what happens when patients don’t get better. “They end up going to SNFs, most of them,” he had told me. “Or they die.”

  That winter, Jeannette drove to facilities some sixty miles from her home in Cambridge, and as she walked through each of them she wondered whether she could imagine her husband there. The options were scant. Though Charlie was off the vent by then, he was still delirious, he had the trach, and he needed a machine to help his weak muscles even muster up a cough, which meant that he was a more medically complex patient than most nursing homes would handle. So Jeannette tried to figure out if she could bring her husband home—theoretically she could, she remembered being told, but the costs of the care he needed at that point would have totaled more than half a million yearly. “That was the most awful month,” Jeannette remembered. But then, slowly, things started to shift. First, one of Charlie’s doctors decided that he should go back on the ventilator regularly at night. That might have seemed like a step backward, but with the extra respiratory muscle rest, Charlie’s strength started to improve. His continued need for the ventilator meant he still required the monitoring that the long-term acute care hospital offered, so the looming threat of the nursing home was at least temporarily diminished. And with the aid of a particularly tough and dedicated physical therapist’s “boot camp,” Charlie began to move. By the time I met him, that spring, he still could not walk, but after an excruciating ceiling lift transfer from his bed to his wheelchair, his physical therapists could help him use his arms to hoist his body into a standing position at the parallel bars. He could sit at the edge of his bed with assistance. His mind was clearing. His family arranged for a massage therapist, a young man with a gentle demeanor, to visit him a few nights a week. They played music, Leonard Cohen sometimes or Olivia Newton-John.

  And after months in what sounded to me like limbo, Charlie started to set goals, which he spoke aloud and recorded for himself on his iPhone. He was planning to go home, he told me when I returned to his room—he still needed the ventilator, but would no longer need the exorbitantly expensive twenty-four-hour trained nursing care. He had already started looking for hospital beds online. Though the trach tube had weakened his voice, his tone was confident, and I heard in it glimmers of a past life as an entrepreneur who imagined and then built new companies from the ground up. He would get home by the fall, more than a year after he had been rushed to MGH, he said. I wanted to believe him. Maybe he could beat the odds.

  A few months after I met Charlie, I returned to the RACU for my official rotation. I’d be on for a month. Twelve-hour days, but at least we had weekends off. Some of my co-fellows spoke glowingly about their RACU rotations and the physiology they learned through caring for the survivors of intensive care, but I remembered my moonlighting day and the pain I perceived and my frustration. I’m not sure what it said about me, but I knew that I wouldn’t be able to enjoy learning about respiratory muscle weakness when the smell of it lingered on my clothes even after I’d gone home.

  I started my first day in the RACU with a run on the treadmill near my apartment. I lived just across the street from MGH, so I was able to finish showering at 6:45 and arrive at the hospital with my hair dripping wet and my face still red from my run just minutes after 7 a.m. In the fellows’ lounge, I poured myself a coffee and picked up my list from the junior attending who had been on overnight. I’d gotten a rundown on the patients from my co-fellow the night before, so I scanned through the list that morning to see if anything had changed. Overnight, someone had been increasingly de
lirious and someone had had to go back on the vent and someone else had received intravenous fluids for low blood pressure. The names meant little to me—except for Mr. O’Brien. Months after my moonlighting shift, he was still there.

  My attending was waiting for me at the desk where we sat between patient exams to review the plans for the day. He was a pale, slight, soft-spoken man with a dry sense of humor who spent all but six weeks each year in the laboratory, researching the biochemical mechanisms behind rare lung diseases. He would oversee me as we worked together to move our patients closer to some goal—although as we rounded that morning, and again the next day and the day after that, I realized that it wasn’t clear to me what that goal was, let alone how to get there.

  I fell into a tolerable pattern. In the morning, I ran on the treadmill fast and hard, powered by the most invigorating music I could find. Then a coffee gulped down in the fellows’ lounge, then rounds, lunch, maybe a bronchoscopy to suck out tenacious secretions, a trach change, a few blood draws or consults called, and soon enough it was 7 p.m. and time to sign out again. The rotation continued this way until late one afternoon, when a nurse called over to the desk where I was sitting in front of the computer to order the next day’s labs. “Can someone come to room 28?”

  Her tone sounded urgent. Room 28...I could never understand why the nurses tended to use room numbers instead of names. I looked down at my list: that was Mr. O’Brien’s room. My attending had already left for the day. I grabbed my papers and walked over quickly, pulling on a yellow isolation gown, squirting some Purell into my hands, and grabbing a pair of gloves before stepping in. To my surprise, he didn’t look any different than usual. It was only the monitor above his bed that revealed a change and the reason for the nurse’s concern: Mr. O’Brien had a fever, his heart rate was high and blood pressure precariously low.