Navigating two ‘truths’: a qualitative study of physician-led end-of-life decision-making for children with life-limiting conditions

Abstract

ObjectiveTo describe how paediatricians undertake the process of end-of-life decision-making for a child with a life-limiting condition who is unable to participate in decision-making for themselves.DesignA qualitative phenomenological study using semistructured interviews based around a clinical vignette matched to the clinical practice of individual paediatricians. Verbatim transcripts underwent thematic analysis.SettingPaediatricians practising in Victoria (Australia) between mid-2019 and mid-2020.ParticipantsTwenty-five purposively sampled paediatricians caring for children with specific life-limiting conditions: children with severe neurodisability, oncological or haematological malignancies or complex cardiac disease in an inpatient intensive care or outpatient clinic setting.ResultsA process of physician-led end-of-life decision-making was described. Paediatricians first contemplate that the child’s death is approaching, then prepare themselves by ensuring there are no reversible factors at play. They then inform parents of this view and, if needed, hold discordant views between parents and themselves about the child’s death in a ‘fruitful tension’. Ultimately, they seek to bring parents’ views of their child in line with theirs to facilitate goal alignment.ConclusionsPaediatricians feel responsible for facilitating the alignment of parental understanding of the child’s health status with their own. This is achieved either through direction or by holding differences between parental and medical truths about the child’s health in tension to provide time, space, and clarity. This alignment was seen as key to enabling end-of-life treatment decisions, without which conflict in end-of-life decision-making can arise or persist.