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The Best Interests of Infants and Families During Palliative Care at the End of Life

A Review of the Literature

Sieg, Susan E., MSN, NNP-BC, RNC-NICU; Bradshaw, Wanda T., MSN, RN, NNP-BC, PNP, CCRN; Blake, Stephanie, DNP, NNP-BC

Section Editor(s): Forsythe, Paula L.

doi: 10.1097/ANC.0000000000000567
Outcomes of Neonatal Care

Background: Palliative care is an integral element of care provision in neonatal intensive care units (NICUs). Healthcare providers working in NICUs are likely to provide palliative care at some point in their career.

Purpose: This article examines what neonatal palliative care entails, how parents perceive healthcare providers' actions, what they potentially need at the end of their infant's life, and what bereavement interventions are most supportive for parents.

Search Strategy: We conducted a search of full-text articles published in English in PubMed and CINAHL using the following key words: “NICU bereavement care,” “end-of-life care,” “infant loss,” and “palliative care.”

Findings: Healthcare providers should consider alleviation of the infant's pain and suffering when discussing whether to provide or continue aggressive medical interventions. The timing of these discussions is important. Parents appear to be most comforted by compassionate, caring healthcare providers who show competence and knowledge in the provision of medical/nursing and palliative care.

Implications for Practice: Healthcare providers working in NICUs require specific training in bereavement/palliative care for infants. Families facing the death of their infant must receive support from qualified providers both during and after that death. Furthermore, the infant's quality of life must be considered when discussing withholding or withdrawing care.

Implications for Research: There is a need for further research investigating the specific types of training required by healthcare providers in NICU settings who are providing bereavement/palliative care to neonates, in order to best support the families' needs in these situations.

Neonatal NP Program, Duke University School of Nursing, Durham, North Carolina.

Correspondence: Susan E. Sieg, MSN, NNP-BC, RNC-NICU, Duke University School of Nursing, 307 Trent Dr, Durham, NC 27710 (

The authors declare no conflicts of interest.

© 2019 by The National Association of Neonatal Nurses