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The ‘two-truths’: a qualitative study of how paediatricians navigate end-of-life decision-making for children with life-limiting conditions

Oral Presentation

October 14th 2022 at 10:30am

Institution: The Royal Children's Hospital Melbourne - Victoria, Australia

Background

Paediatricians and parents describe that preparing for end-of-life decision-making for children with life-limiting conditions is beneficial. Paediatricians lead this process and seek to involve parents in a collaborative manner, which improves overall satisfaction in care. However, little is known about how paediatricians prepare parents for end-of-life decision-making.

Aim

To explore how paediatricians approach end-of-life decision-making for children with life-limiting conditions.

Methods
This qualitative study involved 25 purposively sampled paediatricians. Verbatim transcripts from individual semi-structured interviews, conducted between May 2019 and June 2020, underwent thematic analysis. Interviews were based around a case vignette matched to clinical experience of each paediatrician.

Results
Three key themes were identified in the exploration of paediatricians’ approach to end-of-life decision-making for children with life-limiting conditions: (1) there are two truths about the child’s health status, the paediatrician’s truth and the parents’ truth; (2) paediatricians are responsible for communicating their truth to families, and do so to facilitate parental alignment to their proposed care goals; and (3) parental truth about their child has variable influence on paediatricians.

Conclusions
When preparing for end-of-life decisions, paediatricians intentionally structure communication to make parents feel like they have been involved in the process of making an already made decision. The influence of parental understanding of the child’s health status has a variable influence on paediatricians, but ultimately, the paediatrician’s truth prevails. By describing this approach, further questions about its ethical appropriateness, and the overall impact on parents during decision-making times and into their bereavement are raised and require further consideration.

Presenters

  •

    Dr Sid Vemuri

    General Paediatrician and Palliative Medicine Physician - Victorian Paediatric Palliative Care Program

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