How the Fault in Our Stars illuminates four themes of the Adolescent End of Life Narrative

Anna Obergfell Kirkman, Jane A. Hartsock, Alexia M. Torke

Research output: Contribution to journalArticle

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.

Original languageEnglish (US)
Pages (from-to)240-246
Number of pages7
JournalMedical Humanities
Volume45
Issue number3
DOIs
StatePublished - Sep 1 2019

Keywords

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

ASJC Scopus subject areas

  • Pathology and Forensic Medicine
  • Philosophy

Fingerprint Dive into the research topics of 'How the Fault in Our Stars illuminates four themes of the Adolescent End of Life Narrative'. Together they form a unique fingerprint.

  • Cite this