Aim National and local guidance has evolved over the past three years on the optimum timing and locus of delivery of palliative care for neonates with likely life limiting conditions. This study aims to identify common themes and issues which affect this patient group and develop understanding of how hospice care may be used to improve the experience of patients and parents.
Method Retrospective review of all neonates referred from a tertiary neonatal intensive care unit (NICU) to a local children’s hospice over a 3 year period. Each patient’s diagnosis, referral timing, extent of parallel planning at time of NICU discharge and length of NICU stay were analysed. Events after transfer, length of hospice stay and final outcome were also noted and simple statistical analysis performed.
Results Eight neonates were transferred from the NICU to the hospice and a further two neonates transferred from paediatric services were also included as their discharge planning had begun whilst in the NICU. Referrals were made by a mixed group of professionals and no families self referred. Two had severe perinatal complications, two had life limiting congenital anomalies and the remainder a heterogenous mix of life limiting diagnoses. Mean length of stay on NICU prior to transfer was 19 days. Two died in the hospice within 2 h of extubation and the mean length of stay for the remainder who died in the hospice was 10 days. Parallel planning was in place for two neonates prior to transfer and four were eventually discharged from the hospice; three of these remain alive. One neonate was transferred after death on NICU for post-mortem care and family support. All received personalised care plans from the hospice team before transfer and all families were offered long term bereavement support.
Conclusion This case review demonstrates that neonatal end of life care has an inherent complexity, both in clinical conditions and in determining the best care option and locus for the neonate and their family. Hospice care is a valuable resource and can serve the needs of this patient group well.