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.