Serving poor children with chronic diseases_Narrative

Serving poor children with chronic diseases_Narrative -...

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TheEdgeOfTheKnownWorld A physician serving poor children with chronic diseases makes full use of his psychopharmacology arsenal while knowing that something else would be much better therapy. by John D. Lantos I arrive in clinic on Monday morning. I scan my schedule. Three new patients. Hmm, those are hard to judge. Some are straightfor- ward. 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 peo- ple 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 fami- lies 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 necessar- ily 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 pa- tients the same. I notice Troy Wilson’s name; he’s been my pa- tient for more than ten years now. Troy, a thir- t een -yea r -o ldw i thau t i sm ,ha sbeeninf re- quently 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 .Shesaidthathewouldraidtherefrigera- 510 March/April 2007 Narrative Matters DOI 10.1377/hlthaff.26.2.510 ©2007 Project HOPE–The People-to-People Health Foundation, Inc. John Lantos ([email protected]) 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. PREFACE: When pediatrics emerged as aspecialtyintheear lytwentiethcentury , 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 ear- lier scourges of childhood. Today, dealing with psychosocial problems and child ad- vocacy 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 au- tistic 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 herexam-roomencounterwithateenager who can’t read the instructions for his asthma medications. Illiteracy has re- placed measles, and autism is the new ty-
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