Gary Cutler is a gray-haired, gray-bearded man from the town in Connecticut where I live. His silver-rimmed glasses give him a vaguely patrician air that dissipates when he starts talking, something he does with a distinctly unpatrician openness and lack of pretense. I’m new to Connecticut, and Gary is always giving me advice: where to find the best Italian food in town, which houses display the most elaborate collections of ersatz ghosts at Halloween, where to take my wife for a romantic weekend. He’s trying to get me to take up kayaking. He asks about my 2-year-old son and wants to know what costume he wore for Halloween. Gary told me yesterday I should visit a certain German beer garden in New Britain the next time I want to have a few drinks with friends. When I see him in the morning, he asks me how I slept. When I see him in the afternoon, he asks me what I’m having for dinner. Gary and I didn’t get to know each other on the streets of our Connecticut town. In fact, I only know Gary because he doesn’t live there anymore. He lives on the 10th floor of Yale-New Haven Hospital, in room 10254. Gary worked for 48 years in a machine shop, smoothing chunks of metal and plastic into parts for airplanes. “When I started in 1966, OSHA was totally nonexistent,” he tells me. “The only safety equipment they offered you was safety glasses.” The air in his shop was thick with dust. He lists the names of chemicals and compounds I don’t recognize. He mentions beryllium, copper, asbestos, and something called “green glass.” To help me picture it, Gary describes a cartoon he saw once of a man imprisoned in a dungeon. He holds his fists above his head as if they were manacled to the wall, and he turns his head to one side in mock agony. His tongue lolls out the side of his mouth. “You see that one beam of light coming down through the dark?” Gary jerks his head toward an imaginary window at the top of the wall. “That’s how dark it was.” Gary finally retired in 2014. He went on a cruise in Alaska with his wife, and they both came back to Connecticut with runny noses and coughs. Gary’s cough never went away. Before long a pulmonologist diagnosed pulmonary fibrosis and started supplemental oxygen. The myofibroblasts in Gary’s lungs went to work over the next year, wrapping his alveoli in a web of collagen. His oxygen requirement rose and his stamina faded. After moving his bowels at a physical therapy appointment, his breathing suddenly got much worse. The physical therapists called a code. A few minutes later, suffocating, Gary found himself sliding through the ring of a CT scanner. EMTs hoisted him from the scanner onto a gurney and ran to the ambulance. On the way, they told Gary that his right lung had collapsed. Gary isn’t sure about all the details of what happened next. He remembers a voice telling him, “This will hurt.” Then the needle driving into his chest, just below his collarbone. That’s how I got to know Gary Cutler. A tube has been draining air from his pleural space for the last month. Whenever we disconnect the tube from wall suction, Gary turns gray and his oxygen saturation falls. We tried a doxycycline pleurodesis last week. Today, hoping we’d given the pleura enough time to scar shut, we turned off the suction, then clamped the chest tube. I watched from outside the room as his oxygen saturation fell into the high 80s. Gary seemed fine. He was bending his wife’s ear about something, and she sat there quietly, probably tuning him out a little. “Gary, try putting the mask on,” I called to him. It wouldn’t be the first time that Gary’s drive to talk had outpaced his breathing. He stopped talking and held the oxygen mask over his high-flow nasal cannula. He rested like that for a while, and I glanced up every minute or so from a computer outside his room. The light blue numbers on the monitor counted down slowly to 78. Gary’s shoulders heaved like they were moving an invisible weight at the center of his body. I went into the room, held my stethoscope over the right side of his chest, then connected the chest tube back to wall suction and watched the air rushing out through the bubble chamber. An hour or two ago, I pulled a chair next to Gary’s bed and explained to him and his wife that the pleurodesis hadn’t worked, and no nursing home or hospice would be able to manage his chest tube. I don’t remember the words I chose, but I don’t think they mattered much. The two of them already knew he wouldn’t be leaving room 10254. As Gary likes to say, pointing a clubbed finger at his chest, then at his forehead, his lungs may be shot, but his mind works fine. I leaned forward onto my elbows, ready to steer Gary toward the question of what we should do, now that it seemed unlikely he’d ever be able to leave the hospital. Before I started speaking, I pictured Gary in room 10254 after another month of life in the hospital. That image triggered a flood of words in my mind that I hadn’t expected to hear: For all its advantages, the hospital is a dangerous place to be. While you’re here, you’re exposed to dangerous and hard-to-treat infections. Every day you stay in the hospital is a day you lose strength and balance. The best thing for you is to live a life that’s as close to normal as possible. To be as active as possible. And the hospital isn’t the place to do that. We’d like you to be someplace quieter, where you won’t have to put up with all the poking and prodding, all the alarms and blood sugar checks. Where you can be a little more comfortable and start to build your strength back up. These are the scripts I deploy when patients want to stay in the hospital longer than I think is good for them. Or when an insurance company representative says, “Time’s up.” Or when notes from administrators in the Department of Utilization Review start fattening patients’ charts. Even though Gary, unlike almost every other patient, has no place else to go, this is what flashed through my mind when I imagined him living on for months, sustained by wall suction and high-flow oxygen. It’s possible this could happen. And there’s no doubt that, if it does, it will bite a small chunk from our hospital’s bottom line. Of course, the hospital’s bottom line can’t determine what Gary and I decide to do, and I didn’t speak any of those words aloud. But any person who thinks such things as he sits at the bedside of a dying man whose friendship he cherishes, a man who would love nothing more than to leave the hospital, must question his allegiances. Physicians have always served patients, but we’ve also started to serve the systems around us—hospital systems, information technology systems, and, especially, the great amorphous “health care system.” The systems stake their own claim to taking care of patients. They aim for better rates of colon cancer screening, lower hemoglobin A1c levels, and shorter hospital stays. Physicians and systems make each other better most of the time. Gary Cutler is an exception. To the health care system, his quality of life looks like it’s in the tank, and the cost of caring for him in the hospital is astronomical. The rational, system-oriented solution to Gary’s case would be to come to his bedside, show him that the end is near, order a morphine drip, and turn down the oxygen. But systems can’t come to the bedside. They don’t get advice on the best places to drink beer in central Connecticut, and they don’t know what patients do for fun when they’re not in the hospital. For these reasons, systems also don’t get to turn down the oxygen. As I left Gary’s room for the second time today, I asked myself whether I’d unwittingly ceded some part of my agency to the systems. Without knowing it, had I bought in to their dogma that the hospital is a place to be avoided whenever possible and that, when avoidance fails, patients should be ushered out at the earliest feasible time, no matter how anxious or reluctant they are to go? How else could I explain my reflex to talk Gary out of prolonging his stay in room 10254? By repeating my hospitalist boilerplate over and over again, I’ve slowly come to believe it. In silent negotiation with myself, I’ve been convinced that hospitals are nothing but dangerous halfway houses with walls coated in staphylococci and overeducated, mistake-prone warders. Because of its dangers and expense to the health care system, the hospital is no longer a place to stay. It’s become a way station, a treacherous stopover in the “continuum of care.” Hospitalized patients no longer qualify as residents in their rooms. They’ve become migrants on a journey through the health care system. And since we’ve come to think of the hospital as serving the function of a train station—moving people down the line as fast as possible—we shouldn’t be surprised to learn that some patients’ experiences in the hospital have all the warmth of rush hour in Penn Station. Gary Cutler is exceptional in this regard too. He has no other place to go. For him, the continuum of care stops at room 10254. He’s a permanent resident there. So I went to his bedside again this evening and asked him how I could make the hospital a place he’d like to be. He told me he doesn’t mind the alarms and the monitors. He understands that the hospital is a package deal, and they’re part of the package. He doesn’t mind the blood draws and fingersticks either. They give him a chance to chat up the phlebotomists and nurses. What makes the hospital a hospitable place to live and to die? “Having people,” Gary waved his upturned hand at his wife and me, as if he were displaying something grand. “I do not want to be by myself. … Hands-on means a lot to a lot of people, even if they’re grumpy people. It’s called camaraderie. [It lets] you know you’re not pushed into a corner. You’re not forgotten.” He cupped the plastic mask over his mouth and drank in oxygen for a few seconds. “I like having people to talk to. I like having people in here. And knowing I’m not forgotten.” Section Editor: Roxanne K. Young, Associate Senior Editor. Back to top Article Information Corresponding Author: Bennett W. Clark, MD (firstname.lastname@example.org). Acknowledgment: I would like to acknowledge Janet Cutler for her support and for reading the manuscript. I would also like to acknowledge the clinical staff in Pulmonary and Critical Care Medicine at Yale-New Haven Hospital, who made Gary’s final days so meaningful. Conflict of Interest Disclosures: The author has completed and submitted the ICMJE Form for the Disclosure of Potential Conflicts of Interest and none were reported.
JAMA – American Medical Association
Published: Mar 1, 2016
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