Living with a crucial decision: a qualitative study of parental narratives three years after the loss of their newborn in the NICU.

Laurence Caeymaex,Claude Danan,Micheline Garel,Catherine Jousselme,Mario Speranza,Marie-Michèle Bourrat,Caroline Vasilescu,Edwin Robertson

doi:10.1371/journal.pone.0028633

Abstract

BackgroundThe importance of involving parents in the end-of-life decision-making-process (EOL DMP) for their child in the neonatal intensive care unit (NICU) is recognised by ethical guidelines in numerous countries. However, studies exploring parents' opinions on the type of involvement report conflicting results. This study sought to explore parents' experience of the EOL DMP for their child in the NICU.MethodsThe study used a retrospective longitudinal design with a qualitative analysis of parental experience 3 years after the death of their child in four NICUs in France. 53 face-to-face interviews and 80 telephone interviews were conducted with 164 individuals. Semi-structured interviews were conducted to explore how parents perceived their role in the decision process, what they valued about physicians' attitudes in this situation and whether their long-term emotional well being varied according to their perceived role in the EOL DMP.FindingsQualitative analysis identified four types of perceived role in the DMP: shared, medical, informed parental decision, and no decision. Shared DM was the most appreciated by parents. Medical DM was experienced as positive only when it was associated with communication. Informed parental DM was associated with feelings of anxiousness and abandonment. The physicians' attitudes that were perceived as helpful in the long term were explicit sharing of responsibility, clear expression of staff preferences, and respectful care and language toward the child.InterpretationParents find it valuable to express their opinion in the EOL DMP of their child. Nonetheless, they do need continuous emotional support and an explicit share of the responsibility for the decision. As involvement preferences and associated feelings can vary, parents should be able to decide what role they want to play. However, our study suggests that fully autonomous decisions should be misadvised in these types of tragic choices.

Highlights

Neonatal resuscitation makes it possible to treat newborns who because of severe damage from perinatal anoxia, congenital malformations or most often very preterm birth, require intervention to make the transition to extrauterine life and maturation
All four units allowed unrestricted visiting for parents, and none had a specific protocol calling for family meetings for end of life (EOL) decisions in clinical practice
No other differences were observed for parents, or for any of the children’s clinical characteristics

Summary

Introduction

Neonatal resuscitation makes it possible to treat newborns who because of severe damage from perinatal anoxia, congenital malformations or most often very preterm birth, require intervention to make the transition to extrauterine life and maturation. Epidemiological studies have shown various impairments in some of these survivors, findings that feed uncertainty about their future and oblige physicians to consider the utility and appropriateness of these interventions for each child. The answers to these questions about the future (very poor prognosis or intractable suffering) or present (no chance to survive, no-purpose situations) sometimes lead to a decision that lifesustaining treatments should no longer continue [1,2,3,4]. This study sought to explore parents’ experience of the EOL DMP for their child in the NICU

Objectives

Methods

Results