Health Affairs, 26, no. 2 (2007): 510-514 doi: 10.1377/hlthaff.26.2.510 © 2007 by Project HOPE	New Online   VP Candidates On Health Reform   Cutler On McCain's Plan   Scoring Obama's Plan   Roundtable: Politics, Reform   Number Of Uninsured   Delivery System Overhaul

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Narrative Matters

The Edge Of The Known World

PREFACE: When pediatrics emerged as a specialty in the early twentieth century, child health afflictions were quite different than they are today. At the time, 10 percent of newborns did not survive infancy, and infectious diseases such as tuberculosis, polio, and scarlet fever were ubiquitous. The advent of antibiotics and vaccines by midcentury—and their proliferation in recent years—has tamed many of the earlier scourges of childhood. Today, dealing with psychosocial problems and child advocacy are central to child health, and as these two essays suggest, pediatricians are, perforce, warriors for distributive justice. John Lantos, a bioethicist and pediatrician at the University of Chicago, describes his unsatisfactory options for treating an autistic patient because what’s known to be really needed is nonexistent. Pediatrician and professor Perri Klass, one of the founders of Reach Out and Read, recounts her exam-room encounter with a teenager who can’t read the instructions for his asthma medications. Illiteracy has replaced measles, and autism is the new typhoid fever. Social systems and adequate public funding rather than wonder drugs, both authors seem to say, are what’s needed to treat these child health afflictions of the twenty-first century.

I ARRIVE IN CLINIC on Monday morning. I scan my schedule. Three new patients. Hmm, those are hard to judge. Some are straightforward. Others will take an hour as I try to sort out their medical problems, the reasons why they were referred to me, and what they are hoping I can do. I look down the list for the names of people I like. Or people I dread. The ratio between the two is a good indicator of how I will feel by the end of the morning. A day in pediatric chronic disease clinic can be difficult. Some families make it worse. Others make it feel less like work and more like a privilege.

I cannot always figure out what makes me like some families and dislike others. I don’t necessarily like the ones who are easy to get along with or dislike the ones who are difficult. I feel a twinge of shame for even caring. I ought to treat all patients the same.

I notice Troy Wilson’s name; he’s been my patient for more than ten years now. Troy, a thirteen-year-old with autism, has been in frequently of late. His mom is concerned that he is losing weight. At first I thought she was joking. For the longest time, Troy had been gaining too much weight. I had spent time explaining to her that she needed to take this seriously, that his borderline high blood pressure was related to his obesity. She said that he would raid the refrigerator at night, and she couldn’t stop him. When he didn’t get his way, he would throw violent tantrums. I thought he was destined to be fat. Lately, though, he has stopped eating. And he is just as stubborn in his refusals to eat as he was in his late-night binging. At first I was relieved. His weight drifted down from the stratosphere back onto the growth chart. Then it hit the right percentile to be proportionate to his height: five feet, eight inches. Once pudgy, he is now all muscle.

The last time Troy was in, I realized that he’d lost thirty pounds in six months. I kicked myself. I could have missed cancer or something else terrible. I sent him to the lab for some screening blood tests. He freaked out when he saw the needle, and they weren’t able to draw the labs. His mom and I decided to give him another month. She would try hard to feed him more. If he was still losing weight, we’d restrain him and get the blood.

I like Troy. His mom and grandma adore him. And every once in a while, he’ll surface from his completely self-absorbed dream world and give one or both a kiss.

Doctoring The Chronically Ill

 
THIS CLINIC IS IN A SPECIALTY HOSPITAL FOR CHILDREN with chronic diseases—cerebral palsy, seizure disorders, chronic lung disease, attention deficit disorder, and autism. These problems cannot be cured. Instead, they require a lifetime of treatment. Usually treatment is only partially effective. It can relieve some symptoms, and it can allow a semi-normal life. Some of the kids were tiny preemies who developed severe pulmonary disease and needed tracheostomies—now they breathe through plastic tubes in their throats that their parents must suction every few hours to prevent pneumonia. Some were born with brain anomalies that leave them so neurologically impaired that they choke when they swallow and need to be fed through a gastrostomy tube. Many are in wheelchairs or walk with braces. Some have seizures every day in spite of multiple medications.

I wonder what my practice would look like from any of the standard metrics of quality. My outcomes are difficult to assess. Nobody is ever "cured." Success is measured in slight improvements in quality of life. I spend a lot of time on the phone, talking to specialists, coordinating care, dealing with schools and home care agencies. If I were getting paid for performance, I’d go hungry. For some people, I know that I have done extraordinarily good work. I’ve made a difficult and particularly tricky diagnosis, or patched together an individualized medication regimen that helped relieve persistent symptoms. Sometimes I help parents understand something about their child that they do not want to acknowledge or accept. In such cases, parents often cannot gauge the degree of difficulty in what I do. From their perspective, it is simply my job to make diagnoses, to prescribe treatments, to explain things. I am just doing what a doctor ought to do. They bring symptoms—a sore throat, a headache, a rash—and I am supposed to bring the knowledge to diagnose and treat.

Inside La Rabida

Top Doctoring The Chronically Ill Inside La Rabida Troy's Visit What's Needed

 
THE HOSPITAL WHERE MY CLINIC IS LOCATED —La Rabida Children’s Hospital and Research Center—is an oddly happy place. It has the most beautiful location in all of Chicago, on a little peninsula that juts like the prow of a ship into Lake Michigan. In the summer, sailboats bob at their moorings, and I can sometimes imagine that I’m in San Diego or Corfu. In the winter, gun-metal-blue skies turn the lake an angry color, and massive waves crash rhythmically against the seawall.

The hospital’s name is left over from the great World’s Columbian Exposition of 1893. Spain’s pavilion at the Expo was a replica of the La Rabida monastery in Spain. Columbus took refuge at the original La Rabida after his first request to King Ferdinand and Queen Isabella to fund his expedition was turned down. Historians believe that the support of the abbot there convinced Ferdinand and Isabella to give Columbus the money he needed. Our hospital, built on site of the Expo’s La Rabida replica, reflects the quixotic impulses behind such impossible dreams. We, too, seek new worlds.

The new worlds we seek are quite different from the new worlds sought at academic medical centers. There, biomedical scientists are pushing the frontiers of knowledge. Research focuses on high-throughput genetic screening, cloning, regenerative medicine, drug-eluting stents, and other cutting-edge technologies. The hospitals are full of patients whose lives depend on complex, expensive, and technologically sophisticated devices.

My current world is also different. My patients have been diagnosed. We know from what they suffer. And we know what they need—but it is neither diagnostic nor curative. It is generally low-tech. Therefore, it is not trendy. It is not expensive—at least in the context of modern American health care—but the patients are poor. So we cobble together regimens of physical therapy, medication, and psychological counseling to try to help shattered families play the bad hands they’ve been dealt.

Given the nature of my practice, I sometimes use medications or recommend interventions that have not been well studied in children or approved by the Food and Drug Administration (FDA). I recommend things that I’ve heard about at conferences and read papers about, or that just seem to make sense. Some of these complicated or nonvalidated treatment plans have been surprisingly successful; others have not worked so well. The degree of difficulty in any specific case seems to be the gap between what evidence-based medicine suggests we should all know and what lies outside the domain of current evidence. The process of judging this is as subtle and mysterious as the process by which judges score figure skaters in the Olympics. Everybody can recognize a perfect triple axel, and everybody can recognize a fall; in between, we rely on the experts.

Troy’s Visit

Top Doctoring The Chronically Ill Inside La Rabida Troy's Visit What's Needed

 
I WASN'T AT ALL SURE WHETHER I WAS GOING to be able to do anything good for Troy Wilson today. I would try to get some tests, looking for something completely nonspecific. I’ve been Troy’s doctor since he was two years old, when his mom moved north from Tennessee. She tried to work for awhile but couldn’t find anybody to look after Troy. With his autism, he was a real handful; he’d had daily violent tantrums and outbursts of aggressive behavior. He was in a special-ed classroom in a public school, even though he was not retarded. They couldn’t handle him there, either, and they often called his mom to come take him home. Usually she was able to calm him down even when nobody else could.

When we first met, Troy’s mom described his symptoms and their history to me with a dull resignation. She seemed beaten down, baffled at the way her life had turned out. Back in Tennessee, after Troy’s symptoms got worse, she quit her job. Troy’s dad left. I asked whether he was still involved in Troy’s life. She frowned and shook her head. It was just she and Troy now. Sometimes her mother helped out.

Troy and his mom seemed to have a nice relationship. She was exquisitely tuned into his patterns of behavior. As he explored the examining room in a seemingly random way, focusing on small things, she appeared to know just where he was going to go next. He seemed like an exotic creature, living among us but not really one of us. It was as if he was viewing our world from a tangential angle. It was hard to picture him being violent in the way that the school described, but I’d seen enough kids with autism to know that I ought to take the reports seriously.

His weight was down again. I said we’d need to try again to get blood. She nodded. I called the lab and asked for Juanita, the best phlebotomist. She came a few minutes later and tried to sweet-talk Troy into holding still long enough to be stuck. It didn’t work. When she put the tourniquet around his arm, Troy started shrieking and flailing. He was a big, strong teen. We couldn’t hold him still.

We’ll need to take him up to the ER, I told his mom, where they have restraints. She nodded. Troy was still breathing hard, but he no longer seemed angry. He was studying his fingers. We all walked up to the ER together, Troy along with us. Two strong nurses were working there, and we called two burly security guards to help. It took all five of us to wrestle Troy onto the bed. I held his head while each of the others held an extremity, and Juanita managed to draw the blood. Once we were done, his mom hugged him. He calmed down almost immediately.

I understood, now, finally, how frightening it must be for the school—or for his mom—when Troy had a tantrum. I understood, now, suddenly what his mom really meant when she said that she couldn’t keep him out of the refrigerator at night. He’d been my patient for some ten years, and I suddenly realized that I hadn’t had a clue how difficult it really was to take care of him at home. I’d resisted putting him on medication, since medications for autism, though widely used, were not well studied or FDA approved. But now I had a new appreciation for how big and strong he’d become, and how scary he could be.

Back in clinic, I talk to his mom about medication for Troy. If he was having violent outbursts at school, he could hurt other kids or get hurt himself. She doesn’t like the idea of "drugging" him. I don’t either, and I’m not sure that medication will help. The medications that I consider can have severe side effects. But so can his underlying disease.

What’s Needed

Top Doctoring The Chronically Ill Inside La Rabida Troy's Visit What's Needed

 
WHAT TROY REALLY NEEDS IS A THERAPEUTIC DAY SCHOOL with a state-of-the-art autism program. Tasks are broken down into discrete, sequential steps to teach new skills using an antecedent-behavior-consequence model. Teaching units are planned around communicative functions such as "greetings" or "gaining attention." Social stories and scripts are used to help children understand what behavior is expected in different social situations. This is likely to be far better for Troy than manipulating his dopamine levels.

There are two such therapeutic schools in all of Chicago. Together they can take 150 children. The Centers for Disease Control and Prevention estimates the prevalence of autism as somewhere between three and six cases for every thousand children. That means that there are about 5,000 children with autism in Chicago. But current facilities can serve about one out of every thirty-five kids who need services. If I managed to get Troy on the waiting list for one of these schools, he might get in by the year 2020.

In the meantime, the public school system simply puts most kids with autism in special-ed classrooms. And I give them medications, which are covered by Medicaid, to help them cope. Risperidone, the drug of choice, had sales of more than $2 billion last year in the United States alone. Troy’s mom leaves La Rabida with a prescription in her hand. I ask her to bring him back in two weeks, so that we can see if the medication is helping.

Degree of difficulty here: high. Chance of success: pretty low. Alternatives: bleak. Oddly, it isn’t because we don’t know what to do. We do. It just isn’t available. Among all treatments for all ailments in the United States today, the most severely rationed is nonpharmacologic mental health care for poor children. For doctors on the front lines, this creates daily dilemmas. We are forced to give treatment that we know is both dangerous and suboptimal. The only alternative would be to turn away such patients or to refer them for treatments that I know will never actually be available. Among these immoral alternatives, we explore together, trying to find a new and more habitable world. Watching Troy and his mom walk out of clinic, I feel, just for a moment, the heartbreak. I feel frightened and depressed and, oddly, just a little exhilarated. I have to hope. What else can you do when you’re sailing toward the edge of the known world?

I pick up the next chart, turn to my next patient.

Editor's Notes

 
John Lantos (j-lantos{at}uchicago.edu) is a professor of pediatrics at the University of Chicago Pritzker School of Medicine and associate director of the MacLean Center for Clinical Medical Ethics in Chicago, Illinois. The names of people and certain identifying details in the essay have been changed.

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