Preparing for the Unimaginable: How Pediatric ICU Nurses Prepare Families for the Dying Process

Outcomes 1. Identify key actions that help prepare families for the dying process.2. Consider how the defined key actions may apply to other settings of practice. Key Message Preparing families for end-of-life symptoms and circumstances may help minimize adverse grief outcomes, but preparation is not well-operationalized. Bedside nurses accumulate expertise in guiding families through the dying process. Thematic analysis of bedside nurse perspectives identified that nurse-initiated, clinical team collaboration, and family facing actions are key components of preparation. Introduction/Context Feeling prepared for end-of-life (EOL) symptoms may minimize bereaved parents’ risk of adverse outcomes such as perceived child suffering and decisional regret, among other grief-related sequelae.1–4 However, in a recent study bereaved parents reported feeling underprepared for EOL and questioned what it means to be truly “ready” for their child's death.5 Pediatric intensive care unit (PICU) nurses accumulate specific expertise in preparing families for EOL through frequent, intimate presence with families during the dying process. Amplifying this expertise is crucial to improving supportive care for families navigating the end of a child's life. Objectives To describe how nurses prepare families for the dying process in the PICU. Methods This qualitative descriptive study used thematic template analysis6 of existing, previously analyzed focus group and individual interview data from 20 PICU nurses across the United States. A priori, non-exclusive categories that characterized preparatory actions included nurse-initiated, clinical team collaboration, and family facing. Results Nurse-initiated actions included knowing what to expect from experience; tailoring for the individual family; and taking a needs and resources inventory. Clinical team collaborative actions included role coordination and delineation; making a collective, adaptive plan; sharing effort, skill, and strain; and leaving no question unanswered. Family-facing preparatory actions included normalizing, narrating, and easing the dying process; and being present. Conclusion PICU nurses engage in diverse preparatory actions to guide families through their child's dying and death. In this study, nurses described preparatory actions that can be operationalized in other settings (e.g., home and hospice) where dying children are cared for. Further studies examining these settings and parents’ perspectives on preparation for EOL symptoms are crucial to developing and implementing sustainable nurse-led interventions to support families navigating their child's death. Keywords Interdisciplinary Teamwork / ProfessionalismScientific Research