by Atul Gawande
I am sure I can figure out what’s wrong with her, but, if you think about it, that’s a curious faith. I have never seen this woman before in my life, and yet I presume that she is like the others I’ve examined. Is it true? None of my other patients, admittedly, were forty-nine-year-old women who had had hepatitis and a drug habit, had recently been to the zoo and eaten a Fenway frank, and had come in with two days of mild lower-right-quadrant pain. Yet I still believe. Every day, we take people to surgery and open their abdomens, and, broadly speaking, we know what we will find: not eels or tiny chattering machines or a pool of blue liquid but coils of bowel, a liver to one side, a stomach to the other, a bladder down below. There are, of course, differences—an adhesion in one patient, an infection in another—but we have catalogued and sorted them by the thousands, making a statistical profile of mankind.
I am leaning toward appendicitis. The pain is in the right place. The timing of her symptoms, her exam, and her white blood cell count all fit with what I’ve seen before. She’s hungry, however; she’s walking around, not looking sick, and this seems unusual. I go to the radiology reading room and stand in the dark, looking over the radiologist’s shoulder at the images of Duveen’s abdomen flashing up on the monitor. He points to the appendix, wormlike, thick, surrounded by gray, streaky fat. It’s appendicitis, he says confidently. I call the attending surgeon on duty and tell him what we’ve found. “Book the OR,” he says. We’re going to do an appendectomy.
This one is as sure as we get. Yet I’ve worked on similar cases in which we opened the patient up and found a normal appendix. Surgery itself is a kind of autopsy. “Autopsy” literally means “to see for oneself,” and, despite our knowledge and technology, when we look we’re often unprepared for what we find. Sometimes it turns out that we had missed a clue along the way, made a genuine mistake. Sometimes we turn out wrong despite doing everything right.
Whether with living patients or dead, however, we cannot know until we look. Even in the case of Mr. Sykes, I now wonder whether we put our stitches in correctly, or whether the bleeding had come from somewhere else entirely. Doctors are no longer asking such questions. Equally troubling, people seem happy to let us off the hook. In 1995, the United States National Center for Health Statistics stopped collecting autopsy statistics altogether. We can no longer even say how rare autopsies have become.
From what I’ve learned looking inside people, I’ve decided human beings are somewhere between a hurricane and an ice cube: in some respects, permanently mysterious, but in others—with enough science and careful probing—entirely scrutable. It would be as foolish to think we have reached the limits of human knowledge as it is to think we could ever know everything. There is still room enough to get better, to ask questions of even the dead, to learn from knowing when our simple certainties are wrong.
The Dead Baby Mystery
One by one, between 1949 and 1968, each of the ten children born to Marie Noe, a Philadelphia woman, died. One was stillborn. One died at the hospital just after birth. But eight others expired at home, just infants, in their cribs, where Noe said she found them blue and either limp or gasping. Doctors, including some of the most respected pathologists of the time, could find no explanation for the eight crib deaths—autopsies had in fact been done in every case. Foul play was strongly considered, but no evidence for it was found. Later, the medical community would come to recognize that thousands of seemingly healthy infants died inexplicably in their beds each year, a circumstance given the name Sudden Infant Death Syndrome, or SIDS, and the cases were attributed to this.
Still, eight unexplained baby deaths in one family do not sit easily. Marie Noe lost more babies than any mother ever known. We expect doctors to do better than the meager “Cause of death: Undetermined” that the pathologists put in the autopsy reports. Three decades later, they finally seemed to come through. On August 4, 1998, Philadelphia District Attorney Lynne Abraham cited new medical evidence to assert that Noe, now seventy, had smothered her children with a pillow. “Science,” Abraham told the Associated Press, “has been solving old, unsolved cases.” She charged Noe with eight counts of first degree murder.
Abraham’s claim puzzled me. How did she—or rather, “science”—determine that the deaths were homicide and not SIDS? One of the great appeals of science is the idea that it can erase uncertainties. But the truth of the matter is that it tends to raise as many questions as it answers. And this situation seemed unlikely to be an exception. SIDS is not really a disease but rather the name doctors have given to one of the great medical mysteries of our time. Any sudden infant death that remains unexplained after a complete and inconclusive postmortem investigation is defined as SIDS. Typically in these cases, a previously healthy baby is found dead in bed. No cry is heard from the infant prior to its death. The child may be found with clenched fists or frothy, bloodstained fluid issuing from the nose and mouth. Although 90 percent of SIDS deaths occur by six months of age, older infants can die spontaneously and unexpectedly as well.
The early SIDS theory that the babies simply stop breathing has been discredited. Two suggestive findings are that sleeping on soft bedding and sleeping facedown both increase a baby’s risk of sudden death. A successful campaign to get parents to put babies to bed on their backs or sides has been associated with a 38 percent drop in SIDS deaths over four years. Perhaps SIDS will turn out to be a kind of freak accident in which babies, unable to turn over, are smothered by their own bedding. The findings raise questions about how in the world you could accurately distinguish suffocation from SIDS—particularly in the Noe cases, in which the original autopsies had revealed no marks of force, and the corpses were now nothing but bone. Forensic pathologists and child abuse experts I contacted confirmed that there is no distinctive autopsy finding or new test that could distinguish SIDS from homicide by suffocation. So what was the actual basis for charging Noe?
Shortly after the charges were announced, I called around to various people involved in the case to ask that question. None would answer for attribution. But under promise of anonymity, an official admitted that there was no direct evidence to support the charges of homicide. In October 1997, after a reporter from Philadelphia magazine had begun making inquiries for an article about the Noe babies, Philadelphia homicide investigators decided to reopen the case. They asked the Philadelphia Medical Examiner’s office to reexamine the previous autopsies—which really meant just reviewing the available autopsy reports (one was missing), death certificates, and investigation reports. The doctors found no missed physical signs of suffocation, no telltale, overlooked blood work or other tests. Just like the previous pathologists, all they had was eight infant deaths in one family without evidence of bodily harm and their suspicions about a mother who had been the only person present when each of the children died. The only difference was that this time the doctors were willing to declare that the pattern alone indicated that the manner of death was homicide.
In child abuse cases, as in so many things, science often can provide only circumstantial evidence. Occasionally, it is true, we doctors do find direct and convincing evidence for diagnosis: burns that could only be from cigarettes, bruises that trace the outline of a coat hanger, a uniform, stockinglike burn indicating a foot plunged into and held down in hot liquid. I once took care of a screaming twomonth-old boy whose face had been badly scalded—his father said it was the result of accidentally turning on the hot water tap while bathing him. But the absence of a splash pattern to the burns made us on the team suspect abuse. We took full body X rays of the child to look for other injuries. He turned out to have between five and eight rib fractures and fractures of both legs. Some were weeks old. Some were new. Genetic and collagen studies excluded bone and metabolic abnormalities that could account for such extensive injuries. This was concrete evidence of abuse, and the child was removed from his parents. But even then, as my testimony at trial indicated, our evidence could not point to which of them had done t
he harm. (It was the police investigation that ultimately clinched the case against the father and led a jury to send him to jail for felony child abuse.) Most cases do not come with such obvious physical signs of maltreatment. In deciding whether to sic the department of social services or police on a family, we usually have only vague indicators to rely upon. According to guidelines used at Children’s Hospital in Boston, for example, any bruise, facial laceration, or long-bone fracture in an infant is supposed to be considered evidence of possible abuse. That’s not much to go on. In the end, doctors look for the parents to tell us much more than any physical evidence can.
A few years ago, my one-year-old daughter Hattie was playing in our playroom when suddenly she let out a blood-curdling scream. My wife ran in and found her lying on the ground, her right arm bent midway between the elbow and the wrist like an extra joint. As near as we could figure, it seemed she had tried to climb onto our futon couch, gotten her arm caught in the slats, and then gotten pushed over inadvertently by Walker, then two years old. As she fell, the bones of her forearm broke in two. When I arrived with her at the hospital, I was grilled by three different people asking me over and over again, “Now, exactly how did this happen?” It was, I knew all too well, a suspicious story—an unwitnessed fall resulting in a bad long-bone fracture. The doctors were looking, as I do with any child trauma victim, for any inconsistencies or changes in the story the parents tell. It is easy for parents to feel angry and self-righteous when doctors ask questions as if they are cops, but as advanced as medicine has become, questions are still our main diagnostic test for the presence of abuse.
Ultimately, I must have allayed any concerns. My daughter got a pink cast, and I took her home without incident. I couldn’t help but think, however, that my social status played a role in all this. As much as doctors may try to avoid it, when we decide whether to call officials in a case, social factors inevitably play a role. We know, for example, that single parents have almost double the risk of being abusive, poor families almost sixteen times the likelihood. We know that one-third of crack-using mothers abuse or neglect their children. (Race, by the way, is not a factor.) The profile is always in mind.
In the case of Marie Noe, the factors likewise played to her advantage. She was married, middle-class, and respectable. But the fact of eight deaths must mean something, right? As one medical examiner involved in the reopened cases said, repeating a maxim that has gained currency among pathologists, “One SIDS death is a tragedy. Two is a mystery. Three is murder.”
The real answer, however, is that while the pattern seems damning enough in itself, it cannot satisfy reasonable doubts. Bucking his colleagues, Pittsburgh Medical Examiner Cyril Wecht asserted flatly that multiple SIDS deaths in one family do not automatically mean murder. The numbers certainly make the Noe deaths suspicious, he said. After all, experts now believe that losing one baby to SIDS does not increase the chances that a family will lose another. Having even two deaths in one family certainly merits investigation. But, as Wecht went on, there have been cases of two and three unexplained infant deaths in a family in which homicide was ruled highly unlikely. Parents of SIDS babies have been wrongly accused in the past. And most troubling, we don’t know what SIDS is in the first place. We may have lumped several different diseases together in describing the syndrome. Perhaps multiple natural deaths in a family will prove possible, though undoubtedly rare.
Still, although science often cannot prove even fatal child abuse, science is not without its power. Confronted during police questioning with the medical “proof” of her homicides, Noe admitted to having suffocated four of her children and said that she couldn’t recall what had happened to the others. Her lawyer immediately challenged the reliability and admissibility of the confession, obtained as it was during an all-night interview. On June 28, 1999, however, Marie Noe stood up in a Philadelphia Common Pleas Court room, steadied herself with her cane, and pleaded guilty to eight counts of second-degree murder. Sitting in the gallery, her seventy-seven-yearold husband, Arthur, shook his head in bewilderment.
In the end, it is sometimes not science but what people tell us that is the most convincing proof we have.
Whose Body Is It, Anyway?
The first time I saw the patient it was the day before his surgery, and I thought he might be dead. Joseph Lazaroff, as I’ll call him, lay in bed, his eyes closed, a sheet pulled up over his thin, birdlike chest. When people are asleep—or even when they are anesthetized and not breathing by themselves—it does not occur to you to question whether they are alive. They exude life as if it were heat. It’s visible in the tone of an arm muscle, the supple curve of their lips, the flush of their skin. But as I bent forward to tap Lazaroff on the shoulder I found myself stopping short with that instinctive apprehension of touching the dead. His color was all wrong—pallid, fading. His cheeks, eyes, and temples were sunken, and his skin was stretched over his face like a mask. Strangest of all, his head was suspended two inches above his pillow, as if rigor mortis had set in.
“Mr. Lazaroff?” I called out, and his eyes opened. He looked at me without interest, silent and motionless.
I was in my first year of surgical residency and was working on the neurosurgery team at the time. Lazaroff had a cancer that had spread throughout his body, and he had been scheduled for surgery to excise a tumor from his spine. The senior resident had sent me to “consent” him—that is, to get Lazaroff’s signature giving final permission for the operation. No problem, I had said. But now, looking at this frail, withered man, I had to wonder if we were right to operate on him.
His patient chart told the story. Eight months earlier, he had seen his doctor about a backache. The doctor initially found nothing suspicious, but three months later the pain had worsened and he ordered a scan. It revealed extensive cancer—multiple tumors in Lazaroff’s liver, bowel, and up and down his spine. A biopsy revealed it was an untreatable cancer.
Lazaroff was only in his early sixties, a longtime city administrator who had a touch of diabetes, the occasional angina, and the hardened manner of a man who had lost his wife a few years earlier and learned to live alone. His condition deteriorated rapidly. In a matter of months, he lost more than fifty pounds. As the tumors in his abdomen grew, his belly, scrotum, and legs filled up with fluid. The pain and debility eventually made it impossible for him to keep working. His thirty-something son moved in to care for him. Lazaroff went on around-the-clock morphine to control his pain. His doctors told him that he might have only weeks to live. Lazaroff wasn’t ready to hear it, though. He still talked about the day he’d go back to work.
Then he took several bad falls; his legs had become unaccountably weak. He also became incontinent. He went back to his oncologist. A scan showed that a metastasis was compressing his thoracic spinal cord. The oncologist admitted him to the hospital and tried a round of radiation, but it had no effect. Indeed, he became unable to move his right leg; his lower body was becoming paralyzed.
He had two options left. He could undergo spinal surgery. It wouldn’t cure him—surgery or not, he had at the most a few months left—but it offered a last-ditch chance of halting the progression of spinal-cord damage and possibly restoring some strength to his legs and sphincters. The risks, however, were severe. We’d have to go in through his chest and collapse his lung just to get at his spine. He’d face a long, difficult, and painful recovery. And given his frail condition—not to mention the previous history of heart disease—his chances of surviving the procedure and getting back home were slim.
The alternative was to do nothing. He’d go home and continue with hospice care, which would keep him comfortable and help him maintain a measure of control over his life. The immobility and incontinence would certainly worsen. But it was his best chance of dying peacefully, in his own bed, and being able to say good-bye to his loved ones.
The decision was Lazaroff’s.
That, in itself, is a remarkable fact. Little more than a decade ag
o, doctors made the decisions; patients did what they were told. Doctors did not consult patients about their desires and priorities, and routinely withheld information—sometimes crucial information, such as what drugs they were on, what treatments they were being given, and what their diagnosis was. Patients were even forbidden to look at their own medical records: it wasn’t their property, doctors said. They were regarded as children: too fragile and simpleminded to handle the truth, let alone make decisions. And they suffered for it. People were put on machines, given drugs, and subjected to operations they would not have chosen. And they missed out on treatments that they might have preferred.
My father recounts that, through the 1970s and much of the 1980s, when men came to see him seeking vasectomies, it was accepted that he would judge whether the surgery was not only medically appropriate but also personally appropriate for them. He routinely refused to do the operation if the men were unmarried, married but without children, or “too young.” In retrospect, he’s not sure he did right by all these patients, and, he says, he’d never do things this way today. In fact, he can’t even think of a patient in the last few years whom he has turned down for a vasectomy.
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.