Peer-reviewed article

OTHR-06. NARRATIVE MEDICINE AND THE PRACTICE OF PEDIATRIC NEURO-ONCOLOGY: GRAPPLING WITH THE UNTHINKABLE

· 1 Jun 2023

Abstract

Abstract As pediatric neuro-oncology team members work with patients, they engage in life and death struggles on behalf of children. Among patients who survive, many are left with intellectual decline, psychological difficulties, inability to take on daily life skills, and an overall decrease in health-related quality of life (Castellino et al., 2014). Absorbing the weight of these stories of illness and complex survival leads to risk of burnout and moral distress. This research sought to understand how pediatric neuro-oncology team members at a U.S. hospital interact with, interpret, and make meaning of the illnesses, complex recoveries, and deaths of patients as a result of participating in a series of narrative medicine workshops. In the workshops, team members encountered fictional stories of loss and longing for restoration as they engaged in close reading and discussion of a text. Writing about the text after participating in discussion helped members connect more deeply to their own formative stories. Further, it enlarged their capacity to connect to the stories of fellow team members and the narratives of patients and their families. Those who practice narrative medicine seek “to recognize, absorb, interpret, and be moved to action by the stories of others” (Charon et al., 2017, p. 1). Its methods harness creativity and insight to equip those in healthcare not only to diagnose and treat their patients but to bear witness to what patients undergo (Charon et al., 2017). If team members train themselves to see the beauty, pain, complexity, and ambiguity in a work of art, they may in turn see their patients and one another as works of art. The act of engaging in narrative medicine practice as a healthcare team in and of itself alleviates distress and fosters collaborative relationships among team members as they grapple with unthinkable loss in their work.