Dignity, voice, and the terminal sick role within pediatric illness narratives about death and dying

Abstract

This thesis surveys ten pediatric illness narratives about death and dying to examine three common issues a young patient grapples with: dignity, voice, and the terminal sick role. These pathographies and fictional texts offer fresh perspectives beyond the biomedical model’s narrow focus on curative treatment.

The opening section “Dignity of Identity” explores how a person’s sense of self changes upon the diagnosis of a severe illness. Whereas this Nordenfelt concept is often discussed in relation to geriatric patients, dying children face similar challenges as they have to confront the dissonance between their young age and declining health. Subsequently, “Preserving Children’s Voices” spotlights how pediatric illness narratives give weight to a child’s voice despite adult mediation. Although pediatric patients are often undermined due to their limited capacity to act, their desires and lived experience should be taken seriously. Finally, “The Terminal Sick Role” draws attention to the research gap concerning the phenomenology of being terminally ill. Although Parsons’ Sick Role may apply to most acute illnesses, it is inadequate in reflecting the experience of chronic or terminal illnesses because such conditions are neither curable nor temporary. This chapter posits that the terminal sick role could be better understood as the constant oscillation between living and dying roles, and underscores how engaging with both roles reinforces the terminal patient’s resilience.

Reading pediatric terminal illness narratives as a genre that expounds on the complexities of death builds upon the myriad of illness experiences, and highlights how the phenomenology of sickness is inherently subjective. This knowledge foregrounds the need for medical plans to be tailored according to individual needs, especially when curative treatment ceases to benefit the patient.