Here is a brief excerpt: He also includes stories of other sufferers to emphasize the importance of surveillance of their care. Self-evaluation is a cornerstone of professionalism, and Dr. It is distressing for doctors to have to acknowledge the bell curve. In BetterDr. In the nearly 60 years of organizational research on quality measurement and safety improvement that has occurred since World War II, we have collectively learned that we improve only processes that we measure. We went from a world where we were mainly artisans, and that meant you simply did what you could.

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Save Story Save this story for later. 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.

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 ninety-eight per cent of girls her age. In textbooks, the complete list is at least a page long.

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.

Honor is a hospital pharmacist, and she had come across children with abnormal results like this. 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 , sitting out on the long arm of chromosome No. 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 why 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. It was where Albert Sabin invented the oral polio vaccine. The Pages called and were given an appointment for the next morning. Then they put us in a room, and the pediatrician sat down with us. He was very kind, but frank, too. For him, he was sharing a great accomplishment in CF care. And the news was better than our worst fears.

But only forty! 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.

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. According to data from that year, it was, at best, an average program. This was no small matter. In , 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. 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 is a bell curve: a handful of teams with disturbingly poor outcomes for their patients, a handful with remarkably good results, and a great undistinguished middle.

In ordinary hernia operations, the chances of recurrence are one in ten for surgeons at the unhappy end of the spectrum, one in twenty for those in the middle majority, and under one in five hundred for a handful. A Scottish study of patients with treatable colon cancer found that the ten-year survival rate ranged from a high of sixty-three per cent to a low of twenty per cent, depending on the surgeon.

For heartbypass patients, even at hospitals with a good volume of experience, risk-adjusted death rates in New York vary from five per cent to under one per cent—and only a very few hospitals are down near the one-per-cent mortality rate. Advertisement It is distressing for doctors to have to acknowledge the bell curve.

It belies the promise that we make to patients who become seriously ill: that they can count on the medical system to give them their very best chance at life.

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. I am a surgeon in a department that is, our members like to believe, one of the best in the country. Baseball teams have win-loss records. Businesses have quarterly earnings reports. What about doctors? You will learn, for instance, that I am in fact 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.

This is no doubt useful to know. In recent years, there have been numerous 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 to , the federal government released an annual report that came to be known as the Death List, which 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. 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. What one really wants to know is how we perform in typical circumstances.

How do my results compare with those of other surgeons? Getting 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 being done. 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 several years. One small field in medicine has been far ahead of most others in measuring the performance of its practitioners: cystic-fibrosis care.

It did not begin doing so because it was more enlightened than everyone else. It did so because, in the nineteen-sixties, a pediatrician from Cleveland named LeRoy Matthews was driving people in the field crazy.

To anyone treating CF at the time, it was a preposterous assertion. National mortality rates for the disease were estimated to be higher than twenty per cent 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. He had not had a single death among patients younger than six in at least five years.

Unlike pediatricians elsewhere, Matthews viewed CF as a cumulative disease and provided aggressive treatment long before his patients became sick. 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 and enabled them to cough it up. Looking at the data over time is both fascinating and disturbing. By , mortality from CF nationally had dropped so much that the average life expectancy of CF patients had already reached ten years. By , it was eighteen years—a rapid and remarkable transformation.

The foundation has never identified individual centers in its data; to insure participation, it has guaranteed anonymity. By the early nineteen-seventies, ninety-five per cent 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.


The Bell Curve

Author: Joesph R. Atul Gawande. Through the story of a little girl named Annie Page, the author highlights the progression of CF care. An unremarkable detail to her family at the time. Annie was depicted as fine-boned and petite but otherwise healthy. However, her mother would sometimes hear Annie wheezing. Following a slew of tests and a large differential, the pediatrician decided it was time to order a sweat chloride test.





Cystic Fibrosis: Have We Reached a New Bell Curve?


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