The death of a child challenges the order of the world, for it is always premature. We cannot invoke a tale of a long, well-lived life when a child dies, and so we create new stories about innocent suffering, the injustice of the world, the need for heroic rescue, or the pain of tragedy. These stories are the narratives we use to guide our way through the events of life and death: they set the stage for our actions and provide the framework for our beliefs and intentions. In this chapter I will examine how heroic rescue, a common narrative of childhood illness, frames the thinking of pediatricians and parents who are faced with the potential death of a child. 1
Narrative techniques operate in clinical practice as a set of clinical tools. Pediatricians ask questions and listen to a story (“Tell me what brings you to see me today?” “Well, Bobby was doing just fine until last Thursday, when he came home from school with a cough and…”) and then organize that information into a stylized, linear narrative, the “presenting history,” which can function as a diagnostic and prognostic tool. 2 Gaps in the story elicit more questions (“Was anyone else at school sick?”) until bit by bit the patient’s story is revealed and translated into the style, content, and language of a medical history. 3
Pediatrics is more explicitly concerned with families than are most other branches of medicine, and narrative techniques reinforce our understanding of patients not as localized collections of signs and symptoms but as characters in a family story that began before the clinic and will continue after the exam room. As adults, we might all like to view ourselves as the authors of our own story, but working daily with children reminds us of the generational process that produced us and in which we all play a part. Young pediatricians are taught to see the child as one character in the social, emotional, economic, and moral story of the family. This commitment to the family is made explicit by saying, “In pediatrics, the family is the patient.”
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