Death wishes and death thoughts in paediatric palliative care : a survey of German healthcare professionals

Abstract

Background In paediatric palliative care (PPC), expressions related to death range from diffuse thoughts of dying “death thoughts” (DT) to explicit articulations of a desire to die “death wishes” (DW). These expressions pose significant ethical, clinical, and communicative challenges. Although often conflated in public discourse, DT and DW are conceptually distinct and have different implications for care, communication, and ethical reflection. This survey aimed to investigate how healthcare professionals (HCP) in Germany perceive, differentiate, and respond to these expressions in PPC practice. Methods A nationwide online survey was conducted among multidisciplinary PPC professionals in Germany. The 43-item questionnaire included closed- and open-ended questions, addressing clinical experiences with death-related expressions in minors, professional responses, and institutional handling. Quantitative data were analysed descriptively. Qualitative free-text responses were analysed using a framework-guided hybrid thematic analysis. Results A total of 120 HCP participated, including physicians (45%), nurses and social workers (13.3% each), psychologists (9.2%), and chaplains (7.5%). Experiences with DT were reported by 62 of 92 (67.4%) of HCP and DW by 62 of 93 (66.7%). Expressions were most observed in adolescents aged 15–18. DT were often reflective or symbolic, while DW tended to be more explicit and associated with suffering. Professional uncertainty was widespread: 49.3% reported feeling unsure about DT, and 57.5% about DW. Only 29.5% reported the presence of institutional guidelines. Still, 63.5% affirmed the clinical relevance of distinguishing DT from DW. Conclusions These findings highlight a pressing need for conceptual clarity, ethical reflection, and institutional support in addressing death-related expressions in PPC. The distinction between DT and DW is clinically and ethically meaningful yet blurred in practice. Targeted training, evidence-based guidelines, and structured, interdisciplinary dialogue are essential to strengthen professionals’ confidence and competence in interpreting and managing these complex and ethically sensitive situations.