“Still There, Just No Longer Suffering”: Parents’ Experiences of Palliative Sedation in Pediatric Oncology—A Qualitative Study in Hungary

Background/Objectives: Palliative sedation is among the most complex interventions in end-of-life care in pediatric oncology. Its interpretation is shaped not only by clinical criteria for refractory suffering but also by the differing perspectives of parents, children, and healthcare professionals. This qualitative study explored how bereaved parents experienced and retrospectively interpreted sedation in children who died of cancer following palliative sedation. Methods: We conducted semi-structured in-depth interviews with 17 parents from ten families recruited through a pediatric hospice network in Hungary. Interviews were analyzed using reflexive thematic analysis. Results: Parents assessed their children’s suffering through knowledge accumulated during everyday caregiving, which was more nuanced than standard pain-scale ratings. Their understanding of suffering also encompassed the loss of the child’s familiar lifeworld. Hope for recovery did not necessarily disappear during palliative care; it could coexist with hopes for more time, a continuing sense of purpose in caring for the child, or spiritual meaning. For many families, sedation was not experienced as a distinct decision point, particularly in children with brain tumors, where reduced consciousness and disease progression became intertwined. Persistent retrospective doubts were primarily associated with missed opportunities to say goodbye, death occurring sooner than anticipated, and inadequate symptom control. Conclusions: Communication about sedation should be understood as an ongoing, flexible process that addresses the anticipated course of events and opportunities for farewell. Bereavement support should also provide space for revisiting the decision retrospectively.