How are agency and autonomy understood in children’s palliative and end-of-life care?: A narrative review

Public policy in Canada develops through deliberative democracy and, increasingly, public engagement. Children and youth ('young people') remain largely excluded from these processes however; this exclusion is especially evident in health arenas where two conceptual tools, autonomy and agency, are used to justify it. To date, there has not yet been an examination of how these concepts function in children's palliative and end-of-life (P-EOL) care. This narrative review aimed to explore how autonomy and agency are constructed, conveyed, and employed in related literature. To situate and compare understanding of agency and autonomy, we used principles from Childhood Ethics. We scanned four databases using the search terms: young people; P-EOL care; agency; and autonomy. Studies were included if they were peer-reviewed, in English/French, and focused on young people's agency and/or autonomy in P-EOL care. Exclusion criteria included an exclusive focus on neonates. Data were extracted from 52 sources focusing on study location, population, classification of P-EOL experiences, whether and how agency and autonomy were described, and barriers and facilitators to agency/autonomy expression. Analysis highlighted the prominence of autonomy in the literature in comparison to agency, and the conflation of these concepts. The mobilization of both concepts could bolster or thwart young people's engagement in P-EOL care. Several modalities for expressing agency and autonomy were exemplified across the literature, including acute treatment decisions, research participation, decisions regarding sexuality and fertility, and prioritization of play. Overall, this study describes how interpretations of agency and autonomy can inform young people's P-EOL care. Future research would benefit from prioritizing young people's inclusion in P-EOL care research and generating communication-related training for clinicians.