Better (24 page)

"We thought about it after that meeting," Ralph Blackwelder told me. He and his wife, Tracey, have eight children, four of whom have CF. "We thought maybe we should move. We could sell my business here and start a business somewhere else. We were thinking, Why would I want my kids to be seen here, with inferior care? I want the very best people to be helping my children." But he and Tracey were impressed that the team had told them the truth. No one at Cincinnati Children's had made any excuses, and everyone appeared desperate to do better. The Blackwelders had known these people for years. The program's nutritionist, Terri Schindler, had a child of her own in the program. Their pulmonary specialist, Barbara Chini, had been smart, attentive, and loving--taking their late-night phone calls, seeing the children through terrible crises, instituting new therapies as they became available. The program director, Jim Acton, made a personal promise that there would soon be no better treatment center in the world.

Honor Page was alarmed when she saw the numbers. Like the Blackwelders, the Pages had a close relationship with the team at Children's, but the news tested their loyalty. Acton announced the formation of several committees that would work to improve the program's results. Each committee, he said, had to have at least one parent on it. This is unusual; hospitals seldom allow patients and families on internal-review
committees. So, rather than walk away, Honor decided to sign up for the committee that would reexamine the science behind patients' care.

Her committee was puzzled that the center's results were not better. Not only had the center followed national guidelines for CF, but two of its physicians had helped write them. The committee wanted to visit the top centers, but no one knew which those were. Although the Cystic Fibrosis Foundation's annual reports displayed the individual results for each of the country's 117 centers, no names were attached. Doctors put in a call and sent e-mails to the foundation, asking for the names of the top five, but to no avail.

Several months later, in early 2002, Don Berwick visited the Cincinnati program. He was impressed by its sincere desire to improve and by the intense involvement of the families, but he was incredulous when he learned that the committee couldn't get the names of the top programs from the foundation. He called the foundation's executive vice president for medical affairs, Preston Campbell, who reacted with instinctive caution. The centers, he tried to explain, give their data voluntarily. The reason they have done so for forty years is that they have trusted that the data would be kept confidential. Once the centers lose that faith, they might no longer report solid information tracking how different treatments are working, and how well they do.

Campbell is a deliberate and thoughtful man, a pediatric pulmonologist who has devoted his career to cystic fibrosis patients. The discussion with Berwick had left him uneasy. The Cystic Fibrosis Foundation had always been dedicated to the value of research; by investing in bench science, it had helped
decode the gene for cystic fibrosis, produce two new drugs approved for patients, and generate more than a dozen other drugs that are currently being tested. Its investments in tracking patient care had resulted in scores of valuable studies that had resulted in new guidelines, tighter standards for certification, more regularized care. Yet their research also showed that patients continued to get care of widely differing quality.

A couple of weeks after Berwick's phone call, Campbell released the names of the top five centers to Cincinnati. Indeed, he'd become himself persuaded that further improvement would come only through greater transparency. In 2004, the foundation announced a goal of eventually making the outcomes of every center publicly available. But, it insisted, it needed time to achieve this. Only a few of the nation's CF treatment centers had actually agreed to go public.

Still, after traveling to one of the top five centers for a look, I found I could not avoid naming the center I saw--no obscuring physicians' identities or glossing over details. There was simply no way to explain what a great center did without the particulars. The people from Cincinnati found this, too. Within months of learning which the top five centers were, they'd spoken to people at each and then visited what they considered to be the very best one, the Minnesota Cystic Fibrosis Center, at Fairview-University Children's Hospital, in Minneapolis. I went first to Cincinnati and then to Minneapolis for comparison.

W
HAT
I
SAW
in Cincinnati both impressed me and, given its middling ranking, surprised me. The members of the CF staff were skilled, energetic, and dedicated. They had just
completed a flu-vaccination campaign that had reached more than 90 percent of their patients. Before clinic visits, patients filled out questionnaires so that the team would be better prepared for the questions they would have and the services (such as X-rays, tests, and specialist consultations) they would need. Before patients went home, the doctors gave them a written summary of their visit and a complete copy of their record, something that I had never thought to do in my own practice.

I joined Cori Daines, one of the seven CF care specialists, in her clinic one morning. Among the patients we saw was Alyssa. She was fifteen years old, freckled, skinny, with nails painted loud red, straight sandy blond hair tied in a ponytail, a soda in one hand, legs crossed, foot bouncing constantly. Every few minutes, she gave a short, throaty cough. Her parents sat to one side. All the questions were directed to her. How had she been doing? How was school going? Any breathing difficulties? Trouble keeping up with her calories? Her answers were monosyllabic at first. But Daines had known Alyssa for years, and slowly she opened up. Things had mostly been going all right, she said. She had been sticking with her treatment regimen--twice-a-day manual chest therapy by one of her parents, inhaled medications using a nebulizer immediately afterward, and vitamins. Her lung function had been measured that morning, and it was 67 percent of normal--slightly down from her usual 80 percent. Her cough had got a little worse the day before, and this was thought to be the reason for the dip. Daines was concerned about stomach pains that Alyssa had been having for several months. The pains came on unpredictably, Alyssa said--before meals, after meals, in the middle of the night. They were sharp and persisted for
up to a couple of hours. Examinations, tests, and X-rays had found no abnormalities, but she'd stayed home from school for the past five weeks. Her parents, exasperated because she seemed fine most of the time, wondered if the pain could be just in her head. Daines wasn't sure. She asked a staff nurse to check in with Alyssa at home, arranged for a consultation with a gastroenterologist and with a pain specialist, and scheduled an earlier return visit than the usual three months.

This was, it seemed to me, real medicine: untidy, human, but practiced carefully and conscientiously--as well as anyone could ask for. Then I went to Minneapolis.

T
HE DIRECTOR OF
Fairview-University Children's Hospital's cystic fibrosis center for almost forty years has been none other than Warren Warwick, the pediatrician who had conducted the study of LeRoy Matthews's suspiciously high success rate. Ever since then, Warwick has made a study of what it takes to do better than everyone else. The secret, he insists, is simple, and he learned it from Matthews: you do whatever you can to keep your patients' lungs as open as possible. Patients with CF at Fairview got the same things that patients everywhere got--some nebulized treatments to loosen secretions and unclog passageways (a kind of mist tent in a mouth pipe), antibiotics, and a good thumping on their chests every day. Yet, somehow, everything Warwick did was different.

In the clinic one afternoon, I joined him as he saw a seventeen-year-old high school senior named Janelle, who had been diagnosed with CF at the age of six and had been under his care ever since. She had come for her routine three-month
checkup. She wore dyed black hair to her shoulder blades, black Avril Lavigne eyeliner, four earrings in each ear, two more in an eyebrow, and a stud in her tongue. Warwick was seventy-six years old, tall, stooped, and frumpy-looking, with a well-worn tweed jacket, liver spots dotting his skin, wispy gray hair--by all appearances, a doddering, midcentury academic. He stood in front of Janelle for a moment, hands on his hips, looking her over, and then he said, "So, Janelle, what have you been doing to make us the best CF program in the country?"

"It's not easy, you know," she said.

They bantered. She was doing fine. School was going well. Warwick pulled out her latest lung-function measurements. There'd been a slight dip, as there was with Alyssa. Three months earlier, Janelle had been at 109 percent (she was actually doing better than the average child without CF); now she was at around 90 percent. That was still pretty good, and some ups and downs in the numbers are to be expected. But this was not the way Warwick saw the results.

He knitted his eyebrows. "Why did they go down?" he asked.

Janelle shrugged.

Any cough lately? No. Colds? No. Fevers? No. Was she sure she'd been taking her treatments regularly? Yes, of course. Every day? Yes. Did she ever miss treatments? Sure. Everyone does once in a while. How often is once in a while?

Then, slowly, Warwick got a different story out of her: in the past few months, it turned out, she'd barely been taking her treatments at all.

He pressed on. "Why aren't you taking your
treatments?" He appeared neither surprised nor angry. He seemed genuinely curious, as if he'd never run across this interesting situation before.

"I don't know."

He kept pushing. "What keeps you from doing your treatments?"

"I don't know."

"Up here"--he pointed at his own head--"what's going on?"

"
I. Don't. Know
," she said.

He paused for a moment. Then he turned to me, taking a new tack. "The thing about patients with CF is that they're good scientists," he said. "They always experiment. We have to help them interpret what they experience as they experiment. So they stop doing their treatments. And what happens? They don't get sick. Therefore, they conclude, Dr. Warwick is nuts."

"But let's look at the numbers," he said to me, ignoring Janelle. He went to a little blackboard he had on the wall. It appeared to be well used. "A person's daily risk of getting a bad lung illness with CF is 0.5 percent." He wrote the number down. Janelle rolled her eyes. She began tapping her foot. "The daily risk of getting a bad lung illness with CF plus treatment is 0.05 percent," he went on, and he wrote that number down. "So when you experiment you're looking at the difference between a 99.5 percent chance of staying well and a 99.95 percent chance of staying well. Seems hardly any difference, right? On any given day, you have basically a one-hundred-percent chance of being well. But"--he paused and took a step toward me--"it is a big difference." He chalked out the calculations.
"Sum it up over a year, and it is the difference between an 83 percent chance of making it through [the year] without getting sick and only a 16 percent chance."

He turned to Janelle. "How do you stay well all your life? How do you become a geriatric patient?" he asked her. Her foot finally stopped tapping. "I can't promise you anything. I can only tell you the odds."

In this short speech, I realized, was the core of Warwick's worldview. He believed that excellence came from seeing, on a daily basis, the difference between being 99.5 percent successful and being 99.95 percent successful. Many things human beings do are like that, of course: catching fly balls, manufacturing microchips, delivering overnight packages. Medicine's distinction is that lives are lost in those slim margins.

And so he went to work on finding that margin for Janelle. Eventually, he figured out that she had a new boyfriend. She had a new job, too, and was working nights. The boyfriend had his own apartment, and she was either there or at a friend's house most of the time, so she rarely made it home to take her treatments. At school, new rules required her to go to the nurse for each dose of medicine during the day. So she skipped going. "It's such a pain," she said. He learned that there were some medicines she took and some she didn't. One she took because it was the only thing that she felt actually made a difference. She took her vitamins, too. ("Why your vitamins?" "Because they're cool.") The rest she ignored.

Warwick proposed a deal. Janelle would go home for a breathing treatment every day after school and get her best friend to hold her to it. She'd also keep key medications in her
bag or her pocket at school and take them on her own. ("The nurse won't let me." "Don't tell her," he said, and deftly turned taking care of herself into an act of rebellion.) So far, Janelle was OK with this. But there was one other thing, he said: she'd have to come to the hospital for a few days of therapy to recover the lost ground. She stared at him.

"Today?"

"Yes, today."

"How about tomorrow?"

"We've failed, Janelle," he said. "It's important to acknowledge when we've failed."

With that, she began to cry.

W
ARWICK'S COMBINATION OF
focus, aggressiveness, and inventiveness is what makes him extraordinary. He thinks hard about his patients, he pushes them, and he does not hesitate to improvise. Twenty years ago, while he was listening to a church choir and mulling over how he might examine his patients better, he came up with a new stethoscope--a stereo-stethoscope, he calls it. It has two bells dangling from it and, because of a built-in sound delay, transmits lung sounds in stereo. He had an engineer make it for him. Listening to Janelle with the instrument, he put one bell on the right side of her chest and the other on her left side and insisted that he could systematically localize how individual lobes of her lungs sounded.

He invented a new cough. It wasn't enough that his patients actively cough up their sputum. He wanted a deeper,
better cough, and later, in his office, Warwick made another patient practice his cough. The patient stretched his arms upward, yawned, pinched his nose, bent down as far as he could, let the pressure build up, and then, straightening, blasted everything out. ("Again!" Warwick encouraged him. "Harder!")