The Creation and Implementation of a Neonatal Palliative Care Toolkit

Background: According to the March of Dimes (2020), the infant mortality rate in Salt Lake County, Utah was 5.4 per 1,000 live births, with 69% of these infant deaths occurring during the neonatal period. Advances in perinatal medicine have led to increased identification of fetuses with fatal or life-limiting conditions. Prenatal identification of such conditions allows parents to make informed decisions regarding continuing or terminating pregnancy. Although fatal or life-threatening conditions are rare, some parents choose to continue their pregnancy opting for palliative care following the delivery of their newborn. Local Problem: A large urban hospital in the Intermountain West with a Level III Newborn Intensive Care Unit (NICU) and high-risk Labor and Delivery (L&D) Unit lacked a perinatal Neonatal Palliative Care (NPC) pathway for the NICU and L&D Units to follow collaboratively. In addition, caregivers possessed suboptimal knowledge about neonatal end-of-life (EOL) care and the neonatal care team members had not received training about the EOL process or NPC but were expected to manage and provide this complex care. Methods: A quality improvement project was developed to create a NPC Toolkit to increase the education, confidence, and skill of neonatal caregivers regarding the provision of neonatal EOL and NPC. The Toolkit included a NPC Checklist, educational presentation related to the neonatal EOL process and NPC, and a Patient Tracking Form for the multi-disciplinary care team. Project participants completed pre-intervention surveys to gauge their confidence in recognizing EOL behaviors of neonates, their attitudes toward implementation of a NPC Toolkit, and their confidence regarding the provision of NPC for infants and their families. Simulation-based NPC scenarios were offered to neonatal caregivers to gather feedback about the NPC process and aid in the creation of the NPC Checklist. An educational presentation regarding neonatal EOL and NPC was created and presented to the neonatal care team. Post- intervention surveys were sent to the neonatal team to determine the effectiveness of the education and reassess their confidence in the provision of neonatal EOL and palliative care. Results: 100% of participants (n=10) reported increased confidence in their recognition of neonatal EOL compared to only 50% (n=5) prior to implementation of the NPC Toolkit. 90% (n=9) of participants reported increased confidence in their provision of NPC post-implementation of the NPC Toolkit. 100% (n=10) of participants agreed that implementation of the NPC Toolkit was beneficial to their practice in providing NPC. Conclusions: Many neonatal care team participants reported increased confidence in their ability to recognize and address the physiologic and behavioral changes a neonate undergoes during the EOL process after the implementation of the NPC Toolkit. Participants also reported increased confidence in their ability to provide NPC to infants with life-limiting or fatal conditions. The NPC Toolkit is a valuable resource for neonatal care teams regarding the provision of evidence-based, collaborative, and consistent NPC for infants born with fatal or life-limiting conditions.