Abstract
Background
The area of palliative care in pediatrics has been expanding, as evidence emphasizes the benefits of providing pediatric patients and their families with optimized care in cases of chronic illness and end-of-life. The majority of pediatric deaths occur in infants under one year, with significant portions of these deaths taking place in Neonatal Intensive Care Units (NICU). The expansion of palliative care into neonatal medicine is of significant importance, as symptom management and end-of-life care plays a vital role in providing complete care to these infants. Guidelines that have been put into place can vary significantly between centers. Published studies in neonatal palliative care (PC) describe these challenges, however little data currently exists specific to Canadian NICUs.
Objectives
The primary objective was to gather information about current practice trends and themes around barriers in neonatal PC.
Design/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 survey response rate was 57. 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.
Only 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. Only 8% of respondents who work at centres with a guideline found that it was consistently followed.
Respondents were asked to identify barriers to implementation at their place of practice. Common responses noted challenges in NICU collaborations with maternal-fetal medicine and palliative care teams, 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 perceived barriers highlight focus areas for future education and policy development, and emphasize the importance of improved collaboration moving forward.
Clinical Cancer Genetics: Risk Counseling and Management
