What makes a ‘good’ experience? Findings from parents involved in decisions to withhold or withdraw life sustaining treatment from their critically ill baby.

Description

The legal and ethical issues around withdrawing life sustaining treatment (LST) have played out publicly in several cases including Charlie Gard and Alfie Evans. As the parents and medical teams reached an impasse over their treatment, the courts were left to decide their fate, which evoked some negative consequences. The cases evoked much debate about the role of parents in these decisions. The key aim of this study was to understand the experience of parents in relation to decisions to withdraw LST from their baby. Eight parents who had been involved in decisions of this nature were recruited through the Charities, Bliss and Sands and were interviewed for approximately one hour. During the interviews, parents talked about what had made their decision easier or more challenging as well as the longer-term impact of their experiences.

This paper presents the importance of communication, and a clearer understanding about the facets of both ‘good’ and ‘poor’ communication as identified from the reflections of parents. The study highlights how effective communication encourages collaborative decision-making. This has also shown to have more positive outcomes for parents in the longer term. In contrast, suboptimal communication was linked to longer-term negative implications for parents, including doubts about whether the decision was the right one made at the right time.
Understanding what made a ‘good’ experience from the parent perspective has provided an opportunity to offer recommendations for enhanced communication between parents and medical professionals, which may in turn, help avoid future recourse to the courts.

Period	26 Mar 2024
Event title	SLSA Annual Conference 2024
Event type	Conference
Location	Portsmouth, United KingdomShow on map
Degree of Recognition	National