Caring for Dying Infants: A Systematic Review of Healthcare Providers’ Perspectives of Neonatal Palliative Care

Abstract

Objectives: The palliative and hospice care movement has expanded significantly in the United States since the 1960s. Neonatal end of life care, in particular, is a developing area of practice requiring healthcare providers to support terminally ill newborns and their families, to minimize suffering at the end of the neonate’s life. This paper seeks to systematically summarize healthcare providers’ perspectives related to end of life, in order to identify needs and inform future directions. Methods: Informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, we systematically reviewed the literature discussing healthcare provider perspectives of neonatal end of life care ranging from year 2009 to 2020. To be included in the review, articles had to explicitly focus on perspectives of healthcare providers toward neonatal end of life care, be published in academic peer-reviewed sources, and focus on care in the United States. Results: Thirty-three articles were identified meeting all inclusion criteria. The literature covers, broadly, provider personal attitudes, experiences delivering care, practice approaches and barriers, and education and training needs. The experiences of physicians, physician assistants, nurse practitioners, and nurses are highlighted, while less is discussed of other providers involved with this work (e.g., social work, physical therapy). Conclusion: Future research should focus on developing and testing interventions aimed at training and supporting healthcare providers working with neonates at end of life, as well as addressing barriers to the development and implementation of neonatal palliative teams and guidelines across institutions.