Pediatric End-of-Life Decision-Making in Mainland China: Case-Based Analysis of Illness Narratives

BackgroundPediatric palliative care in Mainland China is still developing. Biological, psychological, and social factors may change during the course of illness and after the child's death.ObjectivesThis study examines pediatric end-of-life decision-making in Mainland China across biological, psychological, and social dimensions.MethodsThis study examined illness narratives using a case-based qualitative approach. The analysis included twelve pediatric end-of-life decision-making cases involving children from neonates to 18 years of age.ResultsThe findings indicate that diagnosis- and treatment-related decisions were primarily shaped by the child's biological condition. As time passed, parents' emotions played a larger role in decisions about continuing or stopping treatment and about fulfilling the child's wishes. Social considerations were evident in relation to financial costs, travel burden, and access to care. Following death, bereavement experiences and funeral customs further shaped decision-making, alongside constraints related to limited services and staff shortages.ConclusionsThe findings show that biological, psychological, and social factors changed over the course of illness and bereavement. This suggests a need for better decision support and follow-up bereavement care within pediatric palliative care services in Mainland China.