• Laure Dombrecht, Veerle Piette, Luc Deliens, Filip Cools, Kenneth Chambaere, Linde Goossens, Gunnar Naulaers, Luc Cornette, Kim Beernaert, Joachim Cohen, and NICU Consortium.
• End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel (VUB), Ghent, Belgium; Department of Public Health and Primary Care, Ghent University, Ghent, Belgium. Electronic address: laure.dombrecht@ugent.be.
• J Pain Symptom Manage. 2020 Mar 1; 59 (3): 599-608.e2.

ContextMaking end-of-life decisions (ELDs) in neonates involves ethically difficult and distressing dilemmas for health care providers. Insight into which factors complicate or facilitate this decision-making process could be a necessary first step in formulating recommendations to aid future practice.ObjectivesThis study aimed to identify barriers to and facilitators of the ELD-making process as perceived by neonatologists and nurses.MethodsWe conducted semistructured face-to-face interviews with 15 neonatologists and 15 neonatal nurses, recruited through four neonatal intensive care units in Flanders, Belgium. They were asked what factors had facilitated and complicated previous ELD-making processes. Two researchers independently analyzed the data, using thematic content analysis to extract and summarize barriers and facilitators.ResultsBarriers and facilitators were found at three distinct levels: the case-specific context (e.g., uncertainty of the diagnosis and specific characteristics of the child, parents, and health care providers, which make decision making more difficult), decision-making process (e.g., multidisciplinary consultations and advance care planning, which make decision making easier), and overarching structure (e.g., lack of privacy and complex legislation making decision making more challenging).ConclusionBarriers and facilitators found in this study can lead to recommendations, some simpler to implement than others, to aid the complex ELD-making process. Recommendations include establishing regular multidisciplinary meetings to include all health care providers and reduce unnecessary uncertainty, routinely implementing advance care planning in severely ill neonates to make important decisions beforehand, creating privacy for bad-news conversations with parents, and reviewing the complex legal framework of perinatal ELD making.Copyright © 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

17 keywords...

hide…