Introduction: The majority of pediatric deaths occur in infants under one year, with most taking place in Neonatal Intensive Care Units. The expansion of palliative care into neonatal medicine is important, as symptom management and end-of-life care plays a vital role in providing complete care. Little data currently exists around practices in Canadian NICUs. The primary objective was to gather information about trends in current practices and challenges in neonatal palliative care.
Methods: An anonymous survey was distributed to Canadian Level 3 NICU staff, including neonatologists, neonatal nurse practitioners (NP), and neonatal fellows through the Qualtrics platform. Surveys were distributed through email and responses tracked in the Qualtrics system.
Results: The majority of respondents were neonatologists (50%), with many having more than 5 years of experience. Provision of palliative care was common with 20/57 respondents being involved in 5 or more cases in the past year. 40% of respondents reported that neonatologists and neonatal NPs received palliative care training at their center. When education did exist, lectures (31%) and workshops (26%) were most common. 97% said their centre would benefit from more education. 53% of respondents said their center had an established guideline around neonatal PC, 20% did not know and 27% answered no. 8% found that their guideline was consistently followed. Barriers to PC included interdisciplinary collaborations as well as lack of education and providers’ personal beliefs. Lastly, respondents provided details of their guidelines or common practices in PC which has been collated and summarized.
Conclusion: The results provide a snapshot of the current palliative care practices in academic NICUs across Canada. Overall the results were positive with many centers having a guideline and some provider education. The summarized guideline can be used by enters to improve, update or develop their own guideline.