Authors: Atul Gawande
One of the reasons for this dramatic shift in how decisions are made in medicine was a 1984 book,
The Silent World of Doctor and Patient
, by a Yale doctor and ethicist named Jay Katz. It was a devastating
critique of traditional medical decision making, and it had wide influence. In the book, Katz argued that medical decisions could and should be made by the patients involved. And he made his case using the stories of actual patients.
One was that of “Iphigenia Jones,” a twenty-one-year-old woman who was found to have a malignancy in one of her breasts. Then, as now, she had two options: mastectomy (which would mean removing the breast and the lymph nodes of the nearby axilla) or radiation with minimal surgery (removing just the lump and the lymph nodes). Survival rates were equal, although in a spared breast the tumor can recur and ultimately make mastectomy necessary. This surgeon preferred doing mastectomies, and that’s what he told her he’d do. In the days leading up to the operation, however, the surgeon developed misgivings about removing the breast of someone that young. So the night before the operation he did an unusual thing: he discussed the treatment options with her and let her choose. She chose the breast-preserving treatment.
Sometime later, both patient and surgeon appeared on a panel discussing treatment options for breast cancer. Their story drew a heated response. Surgeons almost uniformly attacked the idea that patients should be allowed to choose. As one surgeon asked, “If doctors have such trouble deciding which treatment is best, how can patients decide?” But, as Katz wrote, the decision involved not technical but personal issues: Which was more important to Iphigenia—the preservation of her breast or the security of living without a significant chance that the lump would grow back? No doctor was the authority on these matters. Only Iphigenia was. Yet in such situations doctors did step in, often not even asking about a patient’s concerns, and made their own decisions—decisions perhaps influenced by money, professional bias (for example, surgeons tend to favor surgery), and personal idiosyncrasy.
Eventually, medical schools came around to Katz’s position. By the time I attended, in the early 1990s, we were taught to see patients as autonomous decision makers. “You work for them,” I was often
reminded. There are still many old-school doctors who try to dictate from on high, but they are finding that patients won’t put up with that anymore. Most doctors, taking seriously the idea that patients should control their own fates, lay out the options and the risks involved. A few even refuse to make recommendations, for fear of improperly influencing patients. Patients ask questions, look up information on the Internet, seek second opinions. And they decide.
In practice, however, matters aren’t so straightforward. Patients, it turns out, make bad decisions, too. Sometimes, of course, the difference between one option and another isn’t especially significant. But when you see your patient making a grave mistake, should you simply do what the patient wants? The current medical orthodoxy says yes. After all, whose body is it, anyway?
Lazaroff wanted surgery. The oncologist was dubious about the choice, but she called in a neurosurgeon. The neurosurgeon, a trim man in his forties with a stellar reputation and a fondness for bow ties, saw Lazaroff and his son that afternoon. He warned them at length about how terrible the risks were and how limited the potential benefit. Sometimes, he told me later, patients just don’t seem to hear the dangers, and in those cases he tends to be especially explicit about them—getting stuck on a ventilator because of poor lung function, having a stroke, dying. But Lazaroff wasn’t to be dissuaded. The surgeon put him on the schedule.
“Mr. Lazaroff, I’m a surgical resident, and I’m here to talk to you about your surgery tomorrow,” I said. “You’re going to be having a thoracic spine corpectomy and fusion.” He looked at me blankly. “This means that we will be removing the tumor compressing your spine,” I said. His expression did not change. “The hope is that it will keep your paralysis from worsening.”
“I’m not paralyzed,” he said at last. “The surgery is so I won’t become paralyzed.”
I quickly retreated. “I’m sorry—I meant, keep you from becoming paralyzed.” Perhaps this was just semantics—he could still move
his left leg some. “I just need you to sign a permission form so you can have the surgery tomorrow.”
The “informed-consent form” is a relatively recent development. It lists as many complications as we doctors can think of—everything from a mild allergic reaction to death—and, in signing it, you indicate that you have accepted these risks. It has the mark of lawyerdom and bureaucracy, and I doubt that patients feel any better informed after reading it. It does, however, provide an occasion to review the risks involved.
The neurosurgeon had already gone over them in detail. So I hit the highlights. “We ask for your signature so we’re sure you understand the risks,” I said. “Although you’re having this done to preserve your abilities, the operation could fail or leave you paralyzed.” I tried to sound firm without being harsh. “You could have a stroke or a heart attack or could even die.” I held the form and a pen out to him.
“No one said I could die from this,” he said, tremulously. “It’s my last hope. Are you saying I’m going to die?”
I froze, not knowing quite what to say. Just then, Lazaroff’s son, whom I’ll call David, arrived, with his wrinkled clothes, scraggly beard, and slight paunch. The father’s mood changed abruptly, and I remembered from notes in the medical chart that David had recently raised the question with him of whether heroic measures were still appropriate. “Don’t you give up on me,” Lazaroff now rasped at his son. “You give me every chance I’ve got.” He snatched the form and the pen from my hand. We stood, chastised and silent, as Lazaroff made a slow, illegible scrawl near the line for his signature.
Outside the room, David told me that he wasn’t sure this was the right move. His mother had spent a long time in intensive care on a ventilator before dying of emphysema, and since then his father had often said that he did not want anything like that to happen to him. But now he was adamant about doing “everything.” David did not dare argue with him.
Lazaroff had his surgery the next day. Once under anesthesia, he was rolled onto his left side. A thoracic surgeon made a long incision,
opening into the chest cavity from the front around to the back along the eighth rib, slipped in a rib spreader, cranked it open, and then fixed in place a retractor to hold the deflated lung out of the way. You could see right down into the back of the chest to the spinal column. A fleshy, tennis ball–size mass enveloped the tenth vertebra. The neurosurgeon took over and meticulously dissected around and under the tumor. It took a couple of hours, but eventually the tumor was attached only where it invaded the bony vertebral body. He then used a rongeur—a rigid, jawed instrument—to take small, painstaking bites in the vertebral body, like a beaver gnawing slowly through a tree trunk, ultimately removing the vertebra and, with it, the mass. To rebuild the spine, he filled the space left behind with a doughy plug of methacrylate, an acrylic cement, and let it slowly harden in place. He slipped a probe in behind the new artificial vertebra. There was plenty of space. It had taken more than four hours, but the pressure on the spinal cord was gone. The thoracic surgeon closed Lazaroff’s chest, leaving a rubber chest tube jutting out to reinflate his lung, and he was wheeled into intensive care.
The operation was a technical success. Lazaroff’s lungs wouldn’t recover, however, and we struggled to get him off the ventilator. Over the next few days, they gradually became stiff and fibrotic, requiring higher ventilator pressures. We tried to keep him under sedation, but he frequently broke through and woke up wild-eyed and thrashing. David kept a despondent bedside vigil. Successive chest X rays showed worsening lung damage. Small blood clots lodged in Lazaroff’s lungs, and we put him on a blood thinner to prevent more clots from forming. Then some slow bleeding started—we weren’t sure from where—and we had to give him blood transfusions almost daily. After a week, he began spiking fevers, but we couldn’t find where the infection was. On the ninth day after the operation, the high ventilator pressures blew small holes in his lungs. We had to cut into his chest and insert an extra tube to keep his lungs from collapsing. The effort and expense it took to keep him going were enormous, the results dispiriting. It became apparent that our efforts were futile. It
was exactly the way Lazaroff hadn’t wanted to die—strapped down and sedated, tubes in every natural orifice and in several new ones, and on a ventilator. On the fourteenth day, David told the neurosurgeon that we should stop.
The neurosurgeon came to me with the news. I went to Lazaroff’s ICU room, one of eight bays arrayed in a semicircle around a nursing station, each with a tile floor, a window, and a sliding glass door that closed it off from the noise but not from the eyes of the nurses. A nurse and I slipped in. I checked to make sure that Lazaroff’s morphine drip was turned up high. Taking my place at the bedside, I leaned close to him and, in case he could hear me, told him I was going to take the breathing tube out of his mouth. I snipped the ties securing the tube and deflated the balloon cuff holding it in his trachea. Then I pulled the tube out. He coughed a couple of times, opened his eyes briefly, and then closed them. The nurse suctioned out phlegm from his mouth. I turned the ventilator off, and suddenly the room was quiet except for the sound of his labored, gasping breaths. We watched as he tired out. His breathing slowed down until he took only occasional, agonal breaths, and then he stopped. I put my stethoscope on his chest and listened to his heart fade away. Thirteen minutes after I took him off the ventilator, I told the nurse to record that Joseph Lazaroff had died.
Lazaroff, I thought, chose badly. Not, however, because he died so violently and appallingly. Good decisions can have bad results (sometimes people must take terrible chances), and bad decisions can have good results (“Better lucky than good,” surgeons like to say). I thought Lazaroff chose badly because his choice ran against his deepest interests—interests not as I or anyone else conceived them, but as he conceived them. Above all, it was clear that he wanted to live. He would take any risk—even death—to live. But, as we explained to him, life was not what we had to offer. We could offer only a chance of preserving minimal lower-body function for his brief remaining time—at a cost of severe violence to him and against
extreme odds of a miserable death. But he did not hear us: in staving off paralysis, he seemed to believe that he might stave off death. There are people who will look clear-eyed at such odds and take their chances with surgery. But, knowing how much Lazaroff had dreaded dying the way his wife had, I do not believe he was one of them.
Could it have been a mistake, then, even to have told him about the surgical option? Our contemporary medical credo has made us exquisitely attuned to the requirements of patient autonomy. But there are still times—and they are more frequent than we readily admit—when a doctor has to steer patients to do what’s right for themselves.
This is a controversial suggestion. People are rightly suspicious of those claiming to know better than they do what’s best for them. But a good physician cannot simply stand aside when patients make bad or self-defeating decisions—decisions that go against their deepest goals.
I remember a case from my first weeks of internship. I was on the general surgical service, and among the patients I was responsible for was a woman in her fifties—I’ll call her Mrs. McLaughlin—who had had a big abdominal operation just two days before. An incision ran the entire length of her belly. Fluids and pain medication dripped through an intravenous line into her arm. She was recovering according to schedule, but she wouldn’t get out of bed. I explained why it was essential for her to get up and around: it cuts the risk of pneumonia, clot formation in leg veins, and other detrimental effects. She wasn’t swayed. She was tired, she said, and didn’t feel up to it. Did she understand that she was risking serious problems? Yes, she said. Just leave me be.
During rounds that afternoon, the chief resident asked me if the patient had gotten out of bed. Well, no, I said—she had refused. That’s no excuse, the chief said, and she marched me back to Mrs. McLaughlin’s room. The chief sat down on the edge of the bed and, as friendly as a country pastor, said, “Hi, how’re you doing,” made
some small talk, took Mrs. McLaughlin by the hand, and then said, “It’s time to get out of bed now.” And I watched Mrs. McLaughlin get up without a moment’s hesitation, shuffle over to a chair, plop herself down, and say, “You know, that wasn’t so bad after all.”
I had come into residency to learn how to be a surgeon. I had thought that meant simply learning the repertoire of moves and techniques involved in doing an operation or making a diagnosis. In fact, there was also the new and delicate matter of talking patients through their decisions—something that sometimes entailed its own repertoire of moves and techniques.
Suppose you’re a doctor. You’re in an examination room of your clinic—one of those cramped spaces with fluorescent lights, a Matisse poster on the wall, a box of latex gloves on the counter, and a cold, padded patient table as centerpiece—seeing a female patient in her forties. She’s a mother of two and a partner in a downtown law firm. Despite the circumstances, and the flimsy paper gown she’s in, she manages to maintain her composure. You feel no mass or abnormality in her breasts. She had a mammogram before seeing you, and now you review the radiologist’s report, which reads, “There is a faint group of punctate, clustered calcifications in the upper outer quadrant of the left breast that were not clearly present on the prior examination. Biopsy must be considered to exclude the possibility of malignancy.” Translation: worrisome features have appeared; they could mean breast cancer.
You tell her the news. Given the findings, you say, you think she ought to have a biopsy. She groans, and then stiffens. “Every time I see one of you people, you find something you want biopsied,” she says. Three times in the past five years, her annual mammogram has revealed an area of “suspicious” calcifications. Three times a surgeon has taken her to the operating room and removed the tissue in question. And three times, under the pathologist’s microscope, it has proved to be benign. “You just don’t know when enough is enough,” she says. “Whatever these specks are that keep turning up, they’ve
proved to be normal.” She pauses, and decides. “I’m not getting another goddam biopsy,” she says, and she stands up to get dressed.