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How The Fault in Our Stars illuminates four themes of the Adolescent End of Life Narrative
  1. Anna Obergfell Kirkman1,2,
  2. Jane A Hartsock2,3,4,
  3. Alexia M Torke2,5,6
  1. 1Legal Affairs, Eskenazi Health, Indianapolis, Indiana, USA
  2. 2Charles Warren Fairbanks Center for Medical Ethics, Indiana University Health, Indianapolis, IN, USA
  3. 3Medical Humanities & Health Studies Program, Indiana University School of Liberal Arts, Indianapolis, Indiana, USA
  4. 4Indiana University Center for Bioethics, Indiana University School of Medicine, Indianapolis, IN, USA
  5. 5Indiana University Center for Aging Research, Regenstrief Institute Inc, Indianapolis, Indiana, USA
  6. 6Division of General Medicine and Geriatrics, Indiana University School of Medicine, Indianapolis, IN, USA
  1. Correspondence to Anna Obergfell Kirkman, Legal Affairs, Eskenazi Health, Indianapolis, IN 46202, USA; anna.kirkman{at}eskenazihealth.edu

Abstract

Adolescents who face life-limiting illness have unique developmental features and strong personal preferences around end of life (EOL) care. Understanding and documenting those preferences can be enhanced by practising narrative medicine. This paper aims to identify a new form of narrative, the Adolescent End of Life Narrative, and recognise four central themes. The Adolescent EOL Narrative can be observed in young adult fiction, The Fault in Our Stars, which elucidates the notion that terminally ill adolescents have authentic preferences about their life and death. Attaining narrative competence and appreciating the distinct perspective of the dying adolescent allows medical providers and parents to support the adolescent in achieving a good death. By thinking with the Adolescent EOL Narrative, adults can use Voicing my CHOiCES, an EOL planning guide designed for adolescents, to effectively capture the adolescent’s preferences, and the adolescent can make use of this type of narrative to make sense of their lived experience.

  • narrative ethics
  • narrative medicine
  • advance care planning
  • literature and medicine
  • paediatrics

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Footnotes

  • Contributors AOK is responsible for the conception of this article; AOK, JAH and AMT are responsible for the design of the work, drafting of the article, making critical revisions at multiple stages and adding intellectual content and for giving final approval of the version to be published. The authors are accountable for the accuracy and integrity of the work.

  • Funding This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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