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

Anna Obergfell Kirkman, Jane A. Hartsock, Alexia 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)
JournalMedical Humanities
DOIs
StateAccepted/In press - May 26 2018

Fingerprint

Narration
End of Life
Fault
Terminally Ill
Terminal Care
Mental Competency
Young Adult
Parents
Thinking
End of Life Care
Lived Experience
Voicing
Dying
Narrative Medicine
Illness
Fiction
Planning
Young Adults

Keywords

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

ASJC Scopus subject areas

  • Pathology and Forensic Medicine
  • Philosophy

Cite this

How the Fault in Our Stars illuminates four themes of the Adolescent End of Life Narrative. / Kirkman, Anna Obergfell; Hartsock, Jane A.; Torke, Alexia.

In: Medical Humanities, 26.05.2018.

Research output: Contribution to journalArticle

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