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Children and youth (\u2018young people\u2019) 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\u2019s 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\u2019s 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\u2019s 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\u2019s P-EOL care. Future research would benefit from prioritizing young people\u2019s inclusion in P-EOL care research and generating communication-related training for clinicians.<\/jats:p>","DOI":"10.1177\/26323524261460928","type":"journal-article","created":{"date-parts":[[2026,7,16]],"date-time":"2026-07-16T10:31:55Z","timestamp":1784197915000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["How are agency and autonomy understood in children\u2019s palliative and end-of-life care?: A narrative review"],"prefix":"10.1177","volume":"20","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5775-954X","authenticated-orcid":false,"given":"Sydney","family":"Campbell","sequence":"first","affiliation":[{"name":"Dalhousie University, Halifax, Nova Scotia, Canada"},{"name":"McGill University, Montr\u00e9al, Qu\u00e9bec, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lauren","family":"Delaney","sequence":"additional","affiliation":[{"name":"Dalhousie University, Halifax, Nova Scotia, Canada"},{"name":"Queen\u2019s University, Kingston, Ontario, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nika","family":"Rovensky","sequence":"additional","affiliation":[{"name":"McGill University, Montr\u00e9al, Qu\u00e9bec, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ryan","family":"Kent","sequence":"additional","affiliation":[{"name":"McGill University, Montr\u00e9al, Qu\u00e9bec, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7221-0566","authenticated-orcid":false,"given":"Amarens","family":"Matthiesen","sequence":"additional","affiliation":[{"name":"Dalhousie University, Halifax, Nova Scotia, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Franco A.","family":"Carnevale","sequence":"additional","affiliation":[{"name":"McGill University, Montr\u00e9al, Qu\u00e9bec, Canada"},{"name":"McGill University, Montr\u00e9al, Qu\u00e9bec, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0581-827X","authenticated-orcid":false,"given":"Mary Ellen","family":"Macdonald","sequence":"additional","affiliation":[{"name":"Dalhousie University, Halifax, Nova Scotia, Canada"},{"name":"McGill University, Montr\u00e9al, Qu\u00e9bec, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2026,7,16]]},"reference":[{"key":"e_1_3_4_2_2","unstructured":"Government of Canada. 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