(+++) PEOPLE, PROFITS, PROSE

The Heart of Caring: A Life in Pediatrics. By Mark Vonnegut. Seven Stories Press. $25.95.

     Sensitive, concerned, knowledgeable thinking delivered in a style that can charitably be described as uneven – that, in essence, is Mark Vonnegut’s The Heart of Caring. As a pediatrician, Vonnegut has patient-focused attitudes that are defiantly old-fashioned, and feelings about kids and parents that, if not 100% demonstrably true, are most definitely heartfelt: “All parents want to be good parents. …Feed the baby. Keep the baby warm. Change the baby’s diapers. …People are all helpless babies who don’t last long or do well without care.”

     Vonnegut is at his best when telling stories of specific patients and what he learned from them, such as a baby named Adeline who was born with trisomy 13, “which is so rare that most people haven’t heard of it” and which leads to a projected lifespan of six months. This girl lived to age 23, “far and away the oldest patient with trisomy 13,” and “taught me more about pediatrics than anyone else.” Vonnegut is much less effective when using examples of patients such as Adeline to make societal points: “Adeline and other children born with genetic diseases are what insurance companies call ‘high utilizers.’ They send us lists of our ‘high utilizers’ as if there was something we could or should be doing about them.”

     Certainly Vonnegut’s feelings about insurance and about medical care in general are clear in The Heart of Caring: “Parading cute, unfortunate children across our TV screens to ask for money is disturbing. …It would be way less expensive to just take care of sick people.” This is on-the-side-of-the-angels thinking, but it is not necessarily realistic. And Vonnegut’s views, especially although not solely about insurance companies, sometimes cause him to become shrill to the point of producing paragraphs that are thoroughly muddled: “Nurse practitioners (NPs) and physician assistants are called ‘physician extenders.’ Innovation that’s all about money and hardly, if at all, about healthcare is dishonest. That NPs are often good clinicians is a lucky break. Doctors who had questions about expanding the role of NPs were dismissed as money-grubbing, obstructionist cranks. To the best of my knowledge, there were no clinical studies or pilot programs, and no one ever mentioned the billions of dollars that would fall into the lap of the insurance industry.”

     Far better and more meaningful for readers than trying to sort out exactly what Vonnegut is trying to say in that section and others like it is paying attention when he talks about patients he has seen and what he learned from seeing them. There is the case of an 11-month-old Haitian girl with tuberculosis of the brain and spinal cord – the result, it turned out, of HIV infection, which at the time (1980) was not yet known. There is the case of harvesting a baby’s bone marrow to provide a transplant for his older brother. There is the baby born with bones so fragile that, at birth, he had more than 100 fractures. There is the child who throws up after eating eggplant but keeps being fed eggplant because his mother is sure he cannot be allergic to it. And the child who is allergic to Christmas trees.

     The stories of these children, of the difficulty of diagnosing and treating them, of the care and commitment that Vonnegut and other pediatricians display day after day, patient after patient, under arduous and often frustrating circumstances – the stories of the doctors’ successes and failures, of the things that uplift them and depress them – these are the elements of The Heart of Caring that are exceptionally involving and that will stay with readers long after they finish the book. But they fit uneasily with a level of advocacy that, however well-intentioned, often makes the book descend into a screed that seems out of touch with reality and that shows Vonnegut longing for an idealized, idyllic past in which medicine in general and pediatrics in particular were perfect: “Having gone to medical school meant something. We practiced cost-effective care because it was the right thing to do and protected our patients from ineffective care. We didn’t need carrots and sticks any more than our patients needed co-payments or deductibles.” The Heart of Caring shows, again and again, that Vonnegut has been and remains a concerned, knowledgeable and effective practitioner. But it also shows, again and again, that he is not a policy maker, not a solutions-oriented analyst of modern medical practices, and not really interested in fixing the admitted imperfections in the American medical model – only in complaining about it to the point of far-too-frequent incoherence.