“When I Heard Palliative Care, I Heard Hospice”: Parents’ Experiences W∖with Pediatric Palliative Care Consultation in the Neonatal Intensive Care Unit (S748)

Abstract

Objectives * Describe the role of pediatric palliative care consultation in the neonatal intensive care unit (NICU) setting. * Describe parent experiences with a pediatric palliative care consultation in the NICU and implications for practice and further research efforts. Background. In 2013, 23,440 infants died in the US; most deaths occurred in the first 28 days of life. Pediatric palliative care consultation (PPC) in the neonatal intensive care unit (NICU) may provide much needed support for these infants and parents. Early in the critical illness trajectory, PPC may assist with parental decision- making. However, there is a paucity of research on parental perceptions of PPC and why these services may be underused in the NICU until death is imminent. Research Objectives. To describe parents’ experiences with a PPC prior to their infant’s death in the NICU. Methods. In this descriptive qualitative study, we conducted individual audio-recorded, semi-structured interviews with a convenience sample of parents (N=10) from a children’s hospital in the Southeastern US approximately four years after infant death. Upon reaching thematic saturation, verbatim transcribed interviews were verified for accuracy, coded, and content analyzed using qualitative descriptive methods. We used member-checking to enhance trustworthiness of the findings. Results. Six of 10 parents had formal PPC. Most PPC occurred near the end of life, and parents’ reported “negative connotations” associated with the consult initially, such as losing hope of curative treatment. However, all parents who received PPC would recommend this service to other parents and found PPC as a helpful layer of support. Specific positive experiences included: feeling like they had an extra advocate, a non-judgmental sounding board, and “another support branch.” Conclusions. PPC is often not considered until very near death, and parents’ identified PPC as a marker of transition from curative to end-of-life care. Nevertheless, parents found PPC to be valuable and would recommend it to other parents. Implications for Research, Policy or Practice. Further research is necessary to understand the factors that influence parental perceptions of PPC and how to identify opportunities for earlier PPC integration in the NICU.