Article Summary by Anna Obergfell Kirkman

This paper suggests the creation of a new category of end of life (EOL) narrative, focused specifically on adolescents, in recognition of their distinct developmental features and their strong preferences about the dying process. Adult EOL narrative has long been showcased, and pediatric EOL narrative is often restricted by its ceaseless rescue efforts. Adolescents deserve their own distinct narrative when it comes to understanding their EOL decisions. This paper offers four major themes that can be identified in the Adolescent EOL Narrative: 1) the paradox of emerging autonomy and limited lifespan, 2) intensity of emotions, 3) the desire to have significant and even adult-like experiences on an accelerated timeline, and 4) preferences around legacy to help support a good death.

These concepts are brought to life in the young adult fiction The Fault in Our Stars, written by author John Green. Using this text can help further identify some of the unique traits of adolescents facing life-limiting illnesses and offer clinicians a window into narrative competence to better engage their adolescent patients. Teens, despite having limitations as a result of a life-limiting illness, still have a strong desire to assert their agency in some form. For adolescents, families, and clinicians, the planning guide Voicing My Choices offers an age-appropriate, well designed platform to discuss and memorialize those preferences. By thinking with the Adolescent EOL Narrative, parents and providers can use Voicing My Choices to help the adolescent with self-expression at a time when other aspects of their life are altered and their independence is limited.

Listen to Anna Obergfell Kirkman discussing her article in the soundbite below: