Health Care Professionals' Awareness of a Child's Impending Death

Title Health Care Professionals’ Awareness of a Child’s Impending Death Purpose The purpose of this research was to explore how health care professionals (HCPs) become aware that a child or neonate will die, and how awareness impacts end-of-life decision making. Theoretical Framework/Rationale No published theory describes HCPs experiences during the early phases of end-of-life decision making in neonatal or pediatric settings. It was anticipated that concepts would emerge from a case study approach, resulting in theory development. Methods A qualitative design using Eisenhardt’s case-study approach was conducted with four cases purposefully selected of hospitalized children with new terminal prognoses. Interdisciplinary HCPs (N=15) actively involved in the children's care participated in a 30-60 minute voice-recorded interview that were transcribed verbatim; field observation and medical record review were completed. Data analysis occurred simultaneously with data collection, using a code book developed/refined by the researcher, and Atlas.ti8 qualitative management software. Matrices were created to analyze data within each case and across all cases, resulting in an emerging theoretical model. Results HCP awareness is fluid, ongoing, and informed through relationship with others and internal reflection. Initial cognitive awareness of the inevitable death is followed by deeper focus on the child through time-oriented attention to the past (what was), present (what is), and future (what should be). HCPs engage in a “delicate dance of figuring out” key issues. Outcome of HCP awareness include: professional responsibility, staying connected, grounded uncertainty, and holding in. HCPs experience multiple cycles of awareness and prolonged periods of liminality (waiting at the threshold of transition), ending with arrival at the child’s active dying. This emerging awareness theory reflects van Gennep’s anthropological Rites of Passage model. Conclusions From beginning awareness that a child will die, HCPs hold much in mind as they strive to meet families’ needs. The emerging theoretical model provides a framework for HCPs to process their awareness, identify personal assumptions and biases, and assess for gaps in understanding as they facilitate end-of-life care discussions. Providing HCPs with avenues to assess their ongoing awareness is essential to ensuring quality care that honors all aspects of a child’s living and dying.