Background Pediatricians in academic care centers are involved in high-complex care for children with life-limiting conditions. They guide families in defining goals of care and medical decision-making. Advance Care Planning (ACP) supports family-centered care and shared decision-making. This study evaluates how pediatricians integrate ACP in their daily care for children with life-limiting conditions.
Methods An interpretative qualitative study using thematic analysis was performed. Single interviews were undertaken with 17 pediatricians working in five pediatric tertiary hospitals.
Results Initiation of ACP discussions is determined by expected disease progression, technical treatment options or increasing symptoms. Pediatricians prefer to discuss ACP within a long-term relationship with a child’s family. This ensures and enables them to address issues concerning challenging medical decisions and end-of-life in the right way at the right time for a specific family. Pediatricians focus in ACP discussions on future scenario’s and related care options. They try to balance between ‘hope’ (normalizing living with illness, focus on problem solving) and ‘the worst’ (decline of the child’s condition and an inevitable death). They aim to prepare the child and family for ‘a life as normal a possible and when inevitable, a good end of life’. Few pediatricians explore the child’s and family’s values and perspectives.
Conclusion Pediatricians focus on prognosis and treatment options in ACP conversations. They take families by the hand throughout the disease trajectories and try to guide medical decision making in the best interest of the child. Exploration and integration of family values seems less integrated in their practice.
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