Complications

by Atul Gawande

  This dynamic is something I only came to understand recently. My youngest child, Hunter, was born five weeks early, weighing barely four pounds, and when she was eleven days old she stopped breathing. She had been home a week and doing well. That morning, however, she seemed irritable and fussy, and her nose ran. Thirty minutes after her feeding, her respiration became rapid, and she began making little grunting noises with each breath. Suddenly, Hunter stopped breathing. My wife, panicked, leaped up and shook Hunter awake, and the baby started breathing again. We rushed her to the hospital.

  Fifteen minutes later, we were in a large, bright, emergency department examination room. With an oxygen mask on, Hunter didn’t quite stabilize—she was still taking over sixty breaths a minute and expending all her energy to do it—but she regained normal oxygen levels in her blood and held her own. The doctors weren’t sure what the cause of her trouble was. It could have been a heart defect, a bacterial infection, a virus. They took X rays, blood, and urine, did an electrocardiogram, and tapped her spinal fluid. They suspected—correctly, as it turned out—that the problem was an ordinary respiratory virus that her lungs were too little and immature to handle. But the results from the cultures wouldn’t be back for a couple of days. They admitted her to the intensive care unit. That night, she began to tire out. She had several spells of apnea—periods of up to sixty seconds in which she stopped breathing, her heartbeat slowed, and she became pale and ominously still—but each time she came back, all by herself.

  A decision needed to be made. Should she be intubated and put on a ventilator? Or should the doctors wait to see if she could recover without it? There were risks either way. If the team didn’t intubate her now, under controlled circumstances, and she “crashed”—maybe the next time she would not wake up from an apneic spell—they would have to perform an emergency intubation, a tricky thing to do in a child so small. Delays could occur, the breathing tube could go down the wrong pipe, the doctors could inadvertently traumatize the airway and cause it to shut down, and then she might suffer brain damage or even die from lack of oxygen. The likelihood of such a disaster was slim but real. I myself had seen it happen. On the other hand, you don’t want to put someone on a ventilator if you don’t have to, least of all a small child. Serious and detrimental effects, such as pneumonia or the sort of lung blowout that Lazaroff experienced, happen frequently. And, as people who have been hooked up to one of these contraptions will tell you, the machine shoots air into and out of you with terrifying, uncomfortable force; your mouth becomes sore; your lips crack. Sedation is given, but the drugs bring complications, too.

  So who should have made the choice? In many ways, I was the ideal candidate to decide what was best. I was the father, so I cared more than any hospital staffer ever could about which risks were taken. And I was a doctor, so I understood the issues involved. I also knew how often problems like miscommunication, overwork, and plain hubris could lead physicians to make bad choices.

  And yet when the team of doctors came to talk to me about whether to intubate Hunter, I wanted them to decide—doctors I had never met before. The ethicist Jay Katz and others have disparaged this kind of desire as “childlike regression.” But that judgment seems heartless to me. The uncertainties were savage, and I could not bear the possibility of making the wrong call. Even if I made what I was sure was the right choice for her, I could not live with the guilt if something went wrong. Some believe that patients should be pushed to take responsibility for decisions. But that would have seemed equally like a kind of harsh paternalism in itself. I needed Hunter’s physicians to bear the responsibility: they could live with the consequences, good or bad.

  I let the doctors make the call, and they did so on the spot. They would keep Hunter off the ventilator, they told me. And, with that, the bleary-eyed, stethoscope-collared pack shuffled onward to their next patient. Still, there was the nagging question: if I wanted the best decision for Hunter, was relinquishing my hard-won autonomy really the right thing to do? Carl Schneider, a professor of law and medicine at the University of Michigan, recently published a book called The Practice of Autonomy, in which he sorted through a welter of studies and data on medical decision making, even undertaking a systematic analysis of patients’ memoirs. He found that the ill were often in a poor position to make good choices: they were frequently exhausted, irritable, shattered, or despondent. Often, they were just trying to get through their immediate pain, nausea, and fatigue; they could hardly think about major decisions. This rang true to me. I wasn’t even the patient, and all I could do was sit and watch Hunter, worry, or distract myself with busywork. I did not have the concentration or the energy to weigh the treatment options properly.

  Schneider found that physicians, being less emotionally engaged, are able to reason through the uncertainties without the distortions of fear and attachment. They work in a scientific culture that disciplines the way they make decisions. They have the benefit of “group rationality”—norms based on scholarly literature and refined practice. And they have the key relevant experience. Even though I am a doctor, I did not have the experience that Hunter’s doctors had with her specific condition.

  In the end, Hunter managed to stay off the ventilator, although she had a slow and sometimes scary recovery. At one point, less than twenty-four hours after the doctors had transferred her to a regular floor, her condition deteriorated and they had to rush her back to the ICU. She spent ten days in intensive care and two weeks in the hospital. But she went home in fine shape.

  Just as there is an art to being a doctor, there is an art to being a patient. You must choose wisely when to submit and when to assert yourself. Even when patients decide not to decide, they should still question their physicians and insist on explanations. I may have let Hunter’s doctors take control, but I pressed them for a clear plan in the event that she should crash. Later, I worried that they were being too slow to feed her—she wasn’t given anything to eat for more than a week, and I pestered them with questions as to why. When they took her off the oxygen monitor on her eleventh day in the hospital, I got nervous. What harm was there in keeping it on, I asked. I’m sure I was obstinate, even wrongheaded, at times. You do the best you can, taking the measure of your doctors and nurses and your own situation, trying to be neither too passive nor too pushy for your own good.

  But the conundrum remains: if both doctors and patients are fallible, who should decide? We want a rule. And so we’ve decided that patients should be the ultimate arbiter. But such a hard-and-fast rule seems ill-suited both to a caring relationship between doctor and patient and to the reality of medical care, where a hundred decisions have to be made quickly. A mother is in labor: should the doctor give hormones to stimulate stronger contractions? Should he or she break the bag of water? Should an epidural anesthetic be given? If so, at what point in labor? Are antibiotics needed? How often should the mother’s blood pressure be checked? Should the doctor use forceps? Should the doctor perform an episiotomy? If things don’t progress quickly, should the doctor perform a cesarean section? The doctor should not make all these decisions, and neither should the patient. Something must be worked out between them, one on one—a personal modus operandi.

  Where many ethicists go wrong is in promoting patient autonomy as a kind of ultimate value in medicine rather than recognizing it as one value among others. Schneider found that what patients want most from doctors isn’t autonomy per se; it’s competence and kindness. Now, kindness will often involve respecting patients’ autonomy, assuring that they have control over vital decisions. But it may also mean taking on burdensome decisions when patients don’t want to make them, or guiding patients in the right direction when they do. Even when patients do want to make their own decisions, there are times when the compassionate thing to do is to press hard: to steer them to accept an operation or treatment that they fear, or forgo one that they’d pinned their hopes on. Many ethicists find this line of reasoning disturbing, and medicine
will continue to struggle with how patients and doctors ought to make decisions. But, as the field grows ever more complex and technological, the real task isn’t to banish paternalism; the real task is to preserve kindness.

  One more case, again from my internship year. The patient—I’ll call him Mr. Howe—was in his late thirties, stout, bald, and with a muted, awkward manner. I wanted to turn the sound up when he spoke, and pictured him as someone who worked alone, perhaps as an accountant or a computer programmer. He was in the hospital following an operation for a badly infected gallbladder. Whenever I saw him, he wore the sad look of someone caged, and he asked no questions. He could not wait to leave the hospital.

  Late Saturday afternoon, maybe three days after his surgery, his nurse paged me. He had spiked a high fever and become short of breath. He didn’t look well, she said.

  I found him sweating profusely, his face flushed, eyes wide. He was sitting bent forward, propped up on his thick arms, panting. He had an oxygen mask on, and, even with the flow turned up to the maximum, the pulse-oximeter readings showed barely adequate oxygen levels in his blood. His heart was racing at well over a hundred beats a minute, and his blood pressure was much too low.

  His wife, a small, thin, pale woman with lank black hair, stood to the side, rocking on her feet and hugging herself. I examined Mr. Howe, drew blood for tests and cultures, and asked the nurse to give him a bolus of intravenous fluid, trying to appear as confident as I could. Then I went out into the hall and paged K., one of the chief residents, for help.

  When she called back, I filled her in on the details. I think he’s septic, I said. Sometimes a bacterial infection gets into the bloodstream and triggers a massive, system-wide response: high fevers and dilation of the body’s peripheral blood vessels, causing the skin to flush, the blood pressure to drop, and the heart to speed up. After abdominal surgery, a common cause of this is an infection of the surgical wound. But his incision was not red or hot or tender, and he had no pain in his belly. His lungs, however, had sounded like a washing machine when I listened with my stethoscope. Perhaps a pneumonia had started this disaster.

  K. came right over. She was just past thirty, almost six feet tall, with short blond hair, athletic, exhaustingly energetic, and relentlessly can-do. She took one look at Howe and then murmured to the nurse to keep an intubation kit available at the bedside. I had started antibiotics, and the fluids had improved his blood pressure a bit, but he was still on maximal oxygen and working hard to maintain his breathing. She went over to him, put a hand on his shoulder, and asked how he was doing. It took a moment before he managed to reply. “Fine,” he said—a silly answer to a silly question, but a conversation starter. She explained the situation: the sepsis, the likely pneumonia, and the probability that he would get worse before he got better. The antibiotics would fix the problem, but not instantly, she said, and he was tiring out quickly. To get him through it, she would need to put him to sleep, intubate him, and place him on a breathing machine.

  “No,” he gasped, and sat straight up. “Don’t . . . put me . . . on a . . . machine.”

  It would not be for long, she said. Maybe a couple of days. We’d give him sedatives so he’d be as comfortable as possible the whole time. And—she wanted to be sure he understood—without the ventilator he would die.

  He shook his head. “No . . . machine!”

  He was, we believed, making a bad decision—out of fear, maybe incomprehension. With antibiotics and some high-tech support, we had every reason to believe, he’d recover fully. Howe had a lot to live for—he was young and otherwise healthy, and he had a wife and a child. Apparently, he thought so, too, for he had cared enough about his well-being to accept the initial operation. If not for the terror of the moment, we thought, he would have accepted the treatment. Could we be certain we were right? No, but if we were right could we really just let him die?

  K. looked over at Howe’s wife, who was stricken with fear and, in an effort to enlist her in the cause, asked what she thought her husband should do. She burst into tears. “I don’t know, I don’t know,” she cried. “Can’t you save him?” She couldn’t take it anymore, and left the room. For the next few minutes, K. kept trying to persuade Howe. When it was clear that she was making no headway, she left to phone his attending surgeon at home, and then returned to the bedside. Soon Howe did tire out. He leaned back in his bed, pale, sweaty strands of hair sticking to his pate, oxygen levels dropping on the monitor. He closed his eyes, and he gradually fell into unconsciousness.

  That was when K. went into action. She lowered the head of Howe’s bed until he lay flat. She had a nurse draw up a tranquilizing agent and administer it in his IV. She pressed a bag mask to his face and squeezed breaths of oxygen down into his lungs. Then I handed her the intubation equipment, and she slipped a long, clear plastic breathing tube down into his trachea on the first try. We wheeled Howe in his bed to the elevator and took him down a few floors to the intensive care unit.

  Later, I found his wife and explained that he was now on a ventilator in the ICU. She said nothing and went to see him.

  Over the next twenty-four hours, his lungs improved markedly. We lightened up on the sedation and let him take over breathing from the machine. He woke up and opened his eyes, the breathing tube sticking out of his mouth. He did not struggle.

  “I’m going to take this tube out of your mouth now, OK?” I said. He nodded. I cut the ties and deflated the balloon cuff holding the tube in place. Then I pulled it out, and he coughed violently a few times. “You had pneumonia,” I told him, “but you’re doing just fine now.”

  I stood there silent and anxious for a moment, waiting to see what he would say. He swallowed hard, wincing from the soreness. Then he looked at me, and, in a hoarse but steady voice, he said, “Thank you.”

  The Case of the Red Leg

  Seeing patients with one of the surgery professors in his clinic one afternoon, I was struck by how often he had to answer his patients’ questions, “I do not know.” These are four little words a doctor tends to be reluctant to utter. We’re supposed to have the answers. We want to have the answers. But there was not a single person he did not have to say those four little words to that day.

  There was the patient who had come in two weeks after an abdominal hernia repair: “What’s this pain I feel next to the wound?”

  There was the patient one month after a gastric-bypass operation: “Why haven’t I lost weight yet?”

  There was the patient with a large pancreatic cancer: “Can you get it out?”

  And to all, the attending gave the same reply: “I do not know.”

  A doctor still must have a plan, though. So to the hernia patient, he said, “Come back in a week and let’s see how the pain’s doing.” To the gastric-bypass patient, “It’ll be all right,” and asked her to come back in a month. To the cancer patient, “We can try to get it out”—and although another surgeon thought he shouldn’t (given the tumor’s appearance on a scan, operation would be futile and risky, the colleague said), and he himself thought the odds of success were slim at best, he and the patient (who was only in her forties, with still-young children at home) decided to go ahead.

  The core predicament of medicine—the thing that makes being a patient so wrenching, being a doctor so difficult, and being a part of a society that pays the bills they run up so vexing—is uncertainty. With all that we know nowadays about people and diseases and how to diagnose and treat them, it can be hard to see this, hard to grasp how deeply uncertainty runs. As a doctor, you come to find, however, that the struggle in caring for people is more often with what you do not know than what you do. Medicine’s ground state is uncertainty. And wisdom—for both patients and doctors—is defined by how one copes with it.

  This is the story of one decision under uncertainty.

  It was two o’clock on a Tuesday afternoon in June. I was in the middle of a seven-week stint as the senior surgical resident in the emergency room. I h
ad just finished admitting someone with a gallbladder infection and was attempting to sneak out for a bite to eat when one of the emergency room physicians stopped me with yet another patient to see: a twenty-three-year-old, Eleanor Bratton, with a red and swollen leg. (The names of patients and colleagues have been changed.) “It’s probably only a cellulitis”—a simple skin infection—“but it’s a bad one,” he said. He had started her on some intravenous antibiotics and admitted her to the medical service. But he wanted me to make sure there wasn’t anything “surgical” going on—an abscess that needed draining or some such. “Would you mind taking a quick look?” Groan. No. Of course not.

  She was in the observation unit, a separate, quieter ward within the ER where she could get antibiotics pumped into her arm and wait for admitting to find her a bed upstairs. The unit’s nine beds are arrayed in a semicircle, each separated by a thin blue curtain, and I found her in Bed 1. She looked fit, athletic, and almost teenage, with blond hair tight in a ponytail, nails painted gold, and her eyes fixed on a television. There did not seem anything seriously ill about her. She was lying comfortably, a sheet pulled up to her waist, the head of the bed raised. I glanced at her chart and saw that she had good vital signs, no fever, and no past medical problems. I walked up and introduced myself: “Hi, I’m Dr. Gawande. I’m the senior surgical resident down here. How are you doing?”

  “You’re from surgery?” she said, with a look that was part puzzlement and part alarm. I tried to reassure her. The emergency physician was “only being cautious,” I said, and having me see her to make sure it was nothing more than a cellulitis. All I wanted to do was ask a few questions and look at her leg. Could she tell me what had been going on? For a moment she said nothing, still trying to compute what to think about all this. Then she let out a sigh and told me the story.