Objective To 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.
Design A qualitative phenomenological study using semistructured interviews based around a clinical vignette matched to the clinical practice of individual paediatricians. Verbatim transcripts underwent thematic analysis.
Setting Paediatricians practising in Victoria (Australia) between mid-2019 and mid-2020.
Participants Twenty-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.
Results A 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.
Conclusions Paediatricians 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.
- qualitative research
- intensive care units, paediatric
- palliative care
Data availability statement
All data relevant to the study are included in the article or uploaded as supplementary information.
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Contributors SV conceptualised and designed the study and interview guide, collected data, carried out data analysis, drafted the initial manuscript and reviewed and revised the manuscript. JH and LG conceptualised and designed the study and interview guide, supervised the data collection, carried out the data analysis and reviewed and revised the manuscript. KW conceptualised the study and reviewed and revised the manuscript. SV accepts full responsibility for the overall content as the guarantor, and all authors approve the final manuscript.
Funding SV is supported by the Australian Government Research Training program, provided by the Australian Government and the University of Melbourne.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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