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Child-specific bioethics: Review of pediatric palliative care ethics guidelines
Christina Lamb1, Dimitra V Pouliopoulou2
1Faculty of Heath Disciplines, Athabasca University, Athabasca, AB, Canada.
Abstract:
Pediatric palliative care is increasingly recognized as an established practice yet less than ten percent of children who need it access it worldwide. Contributing to this gap is an absence of pediatric-specific bioethics frameworks to guide the care of dying children. Because philosophies influence cohesive care provision, the purpose of this review was to critically examine the international, scholarly literature on the ethical content of pediatric end-of-life care guidelines to ascertain what pediatric ethics approaches are used to guide the care of dying children. A Rapid Review of the international, scholarly literature was undertaken from September 2024 to April 2025. Of the 12,215 reviewed documents, 19 were retained for inclusion. Documents were mapped for the presence of pediatric-specific bioethics frameworks, care guidelines, ethical approaches, principles and values. Records were identified according to country, population, holistic care, child-centricity and pediatric, family, and ethicist involvement in ethical decision-making. Nineteen documents were included. Findings were synthesized through tabulation and narrative analysis. No pediatric-specific bioethics framework explicitly originating in pediatric theory and research was identified. Although most ethical approaches focused on children, they relied on prevailing adapted adult frameworks or adultist iterations of principlism, care and relational ethics and single or matrix-based principal accounts. Care for dying children needs to be consistently grounded in child philosophies. Recommendation: Expanding access to pediatric palliative care requires ethics education research toward pediatric-specific pedagogies and bioethics frameworks to support consistent, ethically robust, holistic, and child-centered care to improve access across clinical, international and interdisciplinary settings.
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