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.

Attitudes Toward Neonatal Palliative Care Among Turkish Nurses and Physicians

“…Inadequate societal support for palliative care hinders access to palliative care services. This should be addressed by raising public awareness of this issue 24,37 . The results of the present study indicate that negative past experiences with caring for dying neonates (item 9) and insufficient societal support (item 4) are barriers to palliative care.…”

“…This should be addressed by raising public awareness of this issue. 24,37 The results of the present study indicate that negative past experiences with caring for dying neonates (item 9) and insufficient societal support (item 4) are barriers to palliative care. These findings demonstrate the need to increase education about palliative care both for the public and for health care professionals.…”

Barriers to Palliative Care in the Neonatal Intensive Care Unit from Nurses’ Perspective: A Qualitative Study

“…Several nurses considered the turbulent physical environment of the neonatal intensive care unit to be a barrier to a quiet death. Nurses and parents stated that the existence of palliative care clinical guides as facilitators of palliative care (23). In Kilcullen's study, nurses mentioned the lack of up-to-date training in palliative care as one of the barriers to providing palliative care (14).…”

“…These needs include emotional support from staff, organized palliative care, specific guidelines for prescribing palliative care for infants, and further training in this area. Moreover, holding discussion sessions after the baby's death reduces the burden of the problem and helps as emotional support for adjustment (23). As pointed out above, various studies have emphasized the importance of paying attention to the psychological problems of nurses involved in palliative care and supporting them to perform palliative care in neonatal intensive care units.…”

“…It is difficult to ensure that sufficient opportunities are available for the parents both before and after the death of their child (24). Nevertheless, nurses and physicians have a moral obligation to provide palliative care for the child and parents (23). Recently, researchers have recommended that palliative care be considered from the earliest stages of end-of-life care and mourning.…”