Better

by Atul Gawande

  Skeptics have noted that Cesarean delivery is suspiciously convenient for obstetrician's schedules and, hour for hour, is paid more handsomely than vaginal birth. Obstetricians say that fear of malpractice suits pushes them to do C-sections more readily than even they consider necessary. Putting so many mothers through surgery is hardly cause for celebration. But our deep-seated desire to limit risk to babies is the biggest force behind its prevalence; it is the price extracted by the reliability we aspire to.

  In a sense, there is a tyranny to the score. While we rate the newborn child's health, the mother's pain and blood loss and length of recovery seem to count for little. We have no score for how the mother does, beyond asking whether she lived or not--no measure to prod us to improve results for her, too. Yet this imbalance, at least, can surely be righted. If the child's well-being can be measured, why not the mother's, too? Indeed, we need an Apgar score for everyone who encounters medicine: the psychiatry patient, the patient on the hospital ward, the person going through an operation, and, yes, the mother in childbirth, as well. My research group recently came up with a surgical Apgar score--a ten-point rating based on the amount of blood loss, the lowest heart rate, and the lowest blood pressure a patient experiences during an operation. Among almost a thousand patients we tested it in, those with a score of nine or ten had a less than 4 percent chance of complications and there were no deaths; those with a score less than five had a greater than 50 percent chance of complications and a 14 percent chance of death. All patients deserve a simple measure that indicates how well or badly they have come through and that pushes the rest of us to innovate. There is no reason we cannot aim for everyone to do better.

  "I WATCHED, YOU know," Rourke says. "I could see the whole thing in the surgical lights. I saw her head come out!" Katherine Anne was born seven pounds, fifteen ounces, with brown hair, blue-gray eyes, and soft purple welts where her head had been wedged sideways deep inside her mother's pelvis. Her Apgar score was eight at one minute and nine at five minutes--nearly perfect.

  Her mother had a harder time. "I was a wreck," Rourke says. "I was so exhausted I was basically stuporous. And I had unbearable pain." She'd gone through almost forty hours of labor and a Cesarean section. Peccei told her the next morning, "You got whipped two ways, and you are going to be a mess." She was so debilitated that her milk did not come in.

  "I felt like a complete failure, like everything I had set out to do I failed to do," Rourke says. "I didn't want the epidural and then I begged for the epidural. I didn't want a C-section, and I consented to a C-section. I wanted to breast-feed the baby, and I utterly failed to breast-feed." She was miserable for a week. "Then one day I realized, 'You know what? This is a stupid thing to think. You have a totally gorgeous little child and it's time to pay a little more attention to your totally gorgeous little child.' Somehow she let me put all my regrets behind me."

  ------

  *Earlier in labor, he would have increased the Pitocin dose to far higher amounts than we accept today, in order to bring her cervix to full dilation. Then he would have put the forceps on.

  The Bell Curve

  Finding a meaningful way to measure performance, as Virginia Apgar showed was possible in child delivery, is a form of ingenuity in itself. What you actually do with that measure involves another type of ingenuity, however, and improvement ultimately requires both kinds. One person who has understood this is a Minneapolis doctor who has spent four decades perfecting care for a single, rare, and fatal disease. His experience holds a lesson for all of us. In order to tell you his story, though, I need to first tell you about Annie Page, a young girl who was discovered to have the disease.

  Annie Page's illness began with the kinds of small, unexceptional details that mean nothing until seen in hindsight. Like the fact that, when she was a baby, her father sometimes called her Little Potato Chip, because her skin tasted salty when he kissed her. Or that Annie's mother noticed that her breathing was sometimes a little wheezy, though the pediatrician heard nothing through his stethoscope.

  The detail that finally mattered was Annie's size. For a while, Annie's fine-boned petiteness seemed to be just a family trait. Her sister, Lauryn, four years older, had always been at the bottom end of the pediatrician's growth chart for girls her age. By the time Annie was three years old, however, she had fallen off the chart. She stood an acceptable thirty-four inches tall but weighed only twenty-three pounds--less than 98 percent of girls her age. She did not look malnourished, but she didn't look quite healthy, either.

  "Failure to thrive" is what it's called, and there can be scores of explanations: pituitary disorders, hypothyroidism, genetic defects in metabolism, inflammatory-bowel disease, lead poisoning, HIV, tapeworm infection. In textbooks, the complete list is at least a page long. Annie's doctor did a thorough workup. Then, at four o'clock on July 27, 1997--"I'll never forget that day," her mother, Honor, says--the pediatrician called the Pages at home with the results of a sweat test.

  It's a funny little test. The skin on the inside surface of a child's forearm is cleaned and dried. Two small gauze pads are applied--one soaked with pilocarpine, a medicine that makes skin sweat, and the other with a salt solution. Electrodes are hooked up. Then a mild electric current is turned on for five minutes, driving the pilocarpine into the skin. A reddened, sweaty area about an inch in diameter appears on the skin, and a collection pad of dry filter paper is taped over it to absorb the sweat for half an hour. A technician then measures the concentration of chloride in the pad.

  Over the phone, the doctor told Honor that her daughter's chloride level was far higher than normal. Honor is a hospital pharmacist, and she had come across children with abnormal results like this. "All I knew was that it meant she was going to die," she said quietly when I visited the Pages' home, in the Cincinnati suburb of Loveland. The test showed that Annie had cystic fibrosis.

  Cystic fibrosis is a genetic disease. Only a thousand American children per year are diagnosed as having it. Some ten million people in the United States carry the defective gene, but the disorder is recessive: a child will develop the condition only if both parents are carriers and both pass on a copy. The gene--which was discovered, in 1989, sitting out on the long arm of chromosome No. 7--produces a mutant protein that interferes with cells' ability to manage chloride. This is what makes sweat from people with CF so salty. (Salt is sodium chloride, after all.) The chloride defect thickens secretions throughout the body, turning them dry and gluey. In the ducts of the pancreas, the flow of digestive enzymes becomes blocked, making a child less and less able to absorb food. This was the reason Annie had all but stopped growing. The effects on the lungs, however, are what make the disease lethal. Thickened mucus slowly fills the small airways and hardens, shrinking lung capacity. Over time, the disease leaves a child with the equivalent of just one functioning lung. Then half a lung. Then none at all.

  The one overwhelming thought in the minds of Honor and Don Page was: We need to get to Children's. Cincinnati Children's Hospital is among the most respected pediatric hospitals in the country. It was where Albert Sabin invented the oral polio vaccine. The chapter on cystic fibrosis in the Nelson Textbook of Pediatrics--the bible of the specialty--was written by one of the hospital's pediatricians. The Pages called and were given an appointment for the next morning.

  "We were there for hours, meeting with all the different members of the team," Honor recalled. "They took Annie's blood pressure, measured her oxygen saturation, did some other tests. Then they put us in a room, and the pediatrician sat down with us. He was very kind, but frank, too. He said, 'Do you understand it's a genetic disease? That it's nothing you did, nothing you can catch?' He told us the median survival for patients was thirty years. In Annie's lifetime, he said, we could see that go to forty. For him, he was sharing a great accomplishment in CF care. And the news was better than our worst fears. But only forty! That's not what we wanted to hear."

  The team members reviewed the trea
tments. The Pages were told that they would have to give Annie pancreatic-enzyme pills with the first bite of every meal. They would have to give her supplemental vitamins. They also had to add calories wherever they could--putting tablespoons of butter on everything, giving her ice cream whenever she wanted, and then putting chocolate sauce on it.

  A respiratory therapist explained that they would need to do manual chest therapy at least twice a day, half-hour sessions in which they would strike--"percuss"--their daughter's torso with a cupped hand at each of fourteen specific locations on the front, back, and sides in order to loosen the thick secretions and help her to cough them up. They were given prescriptions for inhaled medicines. The doctor told them that Annie would need to come back once every three months for extended checkups. And then they went home to start their new life. They had been told almost everything they needed to know in order to give Annie her best chance to live as long as possible.

  The one thing that the clinicians failed to tell them, however, was that Cincinnati Children's was not, as the Pages supposed, among the country's top centers for children with cystic fibrosis. According to data from that year, it was, at best, an average program. This was no small matter. In 1997, patients at an average center were living to be just over thirty years old; patients at the top center typically lived to be forty-six. By some measures, Cincinnati was well below average. The best predictor of a CF patient's life expectancy is his or her lung function. At Cincinnati, the lung function achieved by patients under the age of twelve--children like Annie--remained in the bottom 25 percent of the country's CF patients. And the doctors there knew it.

  IT USED TO be assumed that differences among hospitals or doctors in a particular specialty were generally insignificant. If you plotted a graph showing the results of all the centers treating cystic fibrosis--or any other disease, for that matter--people expected that the curve would look something like a shark fin:

  with most places clustered around the very best outcomes. But the evidence has begun to indicate otherwise. What you tend to find instead is a bell curve:

  with a handful of teams showing disturbingly poor outcomes for their patients, a handful obtaining remarkably good results, and a great undistinguished middle.

  After an ordinary hernia operation, for example, the chances a patient will have a recurrent hernia are one in ten with surgeons at the unhappy end of the spectrum, one in twenty with those in the middle majority, and under one in five hundred with an elite handful. For newborns admitted to a neonatal intensive care unit, the risk-adjusted death rate averages 10 percent but varies from 6 to 16 percent, depending on the center. For women undergoing in vitro fertilization, the likelihood of successful pregnancy from a given attempt at implanting a fertilized embryo is around 40 percent for most centers but ranges from under 15 percent to over 65 percent depending on where they go. Differences in the age of patients a center sees, its willingness to accept high-risk patients, and other factors certainly account for some of this variability. Nonetheless, for a given patient, there are wide, meaningful differences among centers and a few are simply better than the rest.

  The bell curve is distressing for doctors to have to acknowledge. It belies the promise that we make to patients: that they can count on the medical system to give them their very best chance. It also contradicts the belief nearly all of us have that we are doing our job as well as it can be done. But evidence of the bell curve is starting to trickle out, to doctors and patients alike, and we are only beginning to find out what happens when it does.

  In medicine, we are used to confronting failure; all doctors have unforeseen deaths and complications. What we're not used to doing is comparing our records of success and failure with those of our peers. I am a surgeon in a department that is, our members like to believe, one of the best in the country. But the truth is that we have had no reliable evidence about whether we're as good as we think we are. Baseball teams have win-loss records. Businesses have quarterly earnings reports. What about doctors?

  There is a company on the Web called HealthGrades, which for $17.95 will give you a report card on any physician you choose. Not long ago, I requested the company's report cards on me and several of my colleagues. They don't tell you that much. You will learn, for instance, that I am certified in my specialty, have no criminal convictions, have not been fired from any hospital, have not had my license suspended or revoked, and have not been disciplined for misconduct. This is no doubt useful to know. But it sets the bar a tad low, doesn't it?

  In recent years, there has been a proliferation of efforts to measure how various hospitals and doctors perform. No one has found the task easy. One difficulty has been figuring out what to measure. For six years, from 1986 to 1992, the federal government released an annual report that came to be known as the Death List. It ranked all the hospitals in the country by their death rate for elderly and disabled patients on Medicare. The spread was alarmingly wide, and the Death List made headlines the first year it came out. But the rankings proved to be almost useless. Death among the elderly or disabled mostly has to do with how old or sick they are to begin with, and the statisticians could never quite work out how to apportion blame between nature and doctors. Volatility in the numbers was one sign of the trouble. Hospitals' rankings seesawed dramatically from one year to the next due to a handful of random deaths. It was unclear what kind of changes would improve their performance (other than sending their sickest patients to other hospitals). Pretty soon the public simply ignored the rankings.

  Even with younger patients, death rates are a poor metric for how doctors do. After all, very few young patients die, and when they do it's rarely a surprise; most already have metastatic cancer or horrendous injuries or the like. What one really wants to know is how we perform in typical circumstances--some kind of score for the immediate results, perhaps, and also a measure of the processes involved. For patients with pneumonia, how often does my hospital get them the correct antibiotic, and on the whole how do they do? How do our results compare with those of other hospitals?

  Gathering this kind of data can be difficult. Medicine still relies heavily on paper records, so to collect information you have to send people to either scour the charts or track the patients themselves, both of which are expensive and laborious propositions. Recent privacy regulations have made the task still harder. Yet it is starting to be done. The country's veterans' hospitals have all now brought in staff who do nothing but record and compare surgeons' complication rates and death rates. Fourteen teaching hospitals, including my own, have recently joined together to do the same. California, New Jersey, New York, and Pennsylvania have been collecting and reporting data on every cardiac surgeon in their states for years.

  ONE SMALL FIELD in medicine has been far ahead of most others in measuring the results its practitioners achieve: cystic fibrosis care. For forty years, the Cystic Fibrosis Foundation has gathered detailed data from the country's cystic fibrosis treatment centers. It did so not because it is more enlightened than everyone else but because, in the 1960s, a pediatrician from Cleveland named LeRoy Matthews was driving people in the field crazy.

  Matthews had started a cystic fibrosis treatment program as a young pulmonary specialist at Babies and Children's Hospital in Cleveland, in 1957, and within a few years was claiming to have an annual mortality rate of less than 2 percent. To anyone treating CF at the time, it was a preposterous assertion. National mortality rates for the disease were estimated to be higher than 20 percent a year, and the average patient died by the age of three. Yet here was Matthews saying that he and his colleagues could stop the disease from doing serious harm for years. "How long [our patients] will live remains to be seen, but I expect most of them to come to my funeral," he told one conference of physicians.

  In 1964, the Cystic Fibrosis Foundation gave a University of Minnesota pediatrician named Warren Warwick a modest budget of ten thousand dollars to collect reports on every patient treated at the thirty-one C
F centers in the United States that year--data that would test Matthews's claim. Several months later, he had the results: the median estimated age at death for patients in Matthews's center was twenty-one years, seven times the age of patients treated elsewhere. Matthews was what we'd now call a positive deviant. He had not had a single death among patients younger than six in at least five years.

  Unlike pediatricians elsewhere, Matthews viewed CF not as a sudden affliction but as a cumulative disease and provided aggressive preventive treatment to stave it off long before his patients became visibly sick from it. He made his patients sleep each night in a plastic tent filled with a continuous aerosolized water mist so dense you could barely see through it. This thinned the tenacious mucus that clogged their airways, enabling them to cough it up. Using an innovation of British pediatricians, he also had family members clap on the children's chests daily to help loosen the mucus. After Warwick's report came out, Matthews's treatment quickly became the standard in this country. The American Thoracic Society endorsed his approach, and Warwick's data registry on treatment centers proved so useful that the Cystic Fibrosis Foundation has continued it ever since.

  Looking at the data over time is both fascinating and disconcerting. By 1966, mortality from CF nationally had dropped so much that the average life expectancy of CF patients had already reached ten years. By 1972, it was eighteen years--a rapid and remarkable transformation. At the same time, though, Matthews's center had got even better. The foundation never identified individual centers in its data; to ensure participation, it guaranteed anonymity. But Matthews's center published its results. By the early 1970s, 95 percent of patients who had gone there before severe lung disease set in were living past their eighteenth birthday. There was a bell curve, and the spread had narrowed a little. Yet every time the average moved up, Matthews and a few others somehow managed to stay ahead of the pack.