Authors: Atul Gawande
Do you let her go? It’s not an unreasonable thing to do. She’s an adult, after all. And a biopsy is not a small thing. Scattered across her left breast are the raised scars—one almost three inches long. Enough tissue has already been taken out that the left breast is distinctly smaller than the right one. And, yes, there are doctors who biopsy too much, who take out breast tissue on the most equivocal of findings. Patients are often right to push for explanations and second opinions.
Still, these calcifications are not equivocal findings. They commonly do indicate cancer—even if they don’t always—and typically at an early and treatable stage. Now, if having control over one’s life is to mean anything, people have to be permitted to make their own mistakes. But when the stakes are this high, and a bad choice may be irreversible, doctors are reluctant to sit back. This is when they tend to push.
So push. Your patient is getting ready to walk out the door. You could stop her in her tracks and tell her she’s making a big mistake. Give her a heavy speech about cancer. Point out the fallacy in supposing that three negative biopsies proves that the fourth one will be negative as well. And in all likelihood you’ll lose her. The aim isn’t to show her how wrong she is. The aim is to give her the chance to change her own mind.
Here’s what I’ve seen good doctors do. They don’t jump right in. They step out for a minute and give the woman time to get dressed. They take her down to the office to sit and talk, where it’s more congenial and less antiseptic—with comfortable chairs instead of a hard table, a throw rug instead of linoleum. And, often, they don’t stand or assume the throne behind the big oak desk but pull up a chair and sit with her. As one surgical professor told me, when you sit close by, on the same level as your patients, you’re no longer the rushed, bossy doctor with no time to talk; patients feel less imposed upon and
more inclined to consider that you may both be on the same side of the issue at hand.
Even at this point, many doctors won’t fuss or debate. Instead, some have what can seem like strange, almost formulaic conversations with the patient, repeating, virtually word for word, what she tells them. “I see your point,” they might say. “Every time you come in, we find something to biopsy. The specks keep coming up normal, but we never stop biopsying.” Beyond this, many doctors say almost nothing until they’re asked to. Whether one calls this a ruse or just being open to their patients, it works, oddly enough, nine times out of ten. People feel heard and like they have had an opportunity to express their beliefs and concerns. At that point, they may finally begin to ask questions, voice doubts, even work through the logic themselves. And once they do, they tend to come around.
A few still resist, though, and when doctors really think someone is endangering himself or herself, other tactics are not beyond the pale. They may enlist reinforcements. “Should we call the radiologist and see what he really thinks?” they might ask, or “Your family’s out in the waiting room. Why don’t we ask them to come in?” They might give the patient time “to think it over,” knowing that people often waver and change their minds. Sometimes they resort to subtler dynamics. I once saw a doctor, faced with a heart disease patient who wouldn’t consider quitting smoking, simply fall silent, letting the complete extent of his disappointment show. The seconds tocked by until a full minute had passed. Before a thoughtful, concerned, and, yes, sometimes crafty doctor, few patients will not eventually “choose” what the doctor recommends.
But it’s misleading to view all this simply as the art of doctorly manipulation: when you see patients cede authority to the doctor, something else may be going on. The new orthodoxy about patient autonomy has a hard time acknowledging an awkward truth: patients frequently don’t want the freedom that we’ve given them. That is,
they’re glad to have their autonomy respected, but the exercise of that autonomy means being able to relinquish it. Thus, it turns out that patients commonly prefer to have others make their medical decisions. One study found that although 64 percent of the general public thought they’d want to select their own treatment if they developed cancer, only 12 percent of newly diagnosed cancer patients actually did want to do so.
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.