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End-of-life decisions in neonatal care: a conversation analytical study
  1. Neil Marlow1,
  2. Chloe Shaw1,
  3. Kat Connabeer2,
  4. Narendra Aladangady3,
  5. Katie Gallagher1,
  6. Paul Drew4
  1. 1Institute for Women's Health, UCL, London, UK
  2. 2Social Science, Birmingham City University, Birmingham, West Midlands, UK
  3. 3Neonatal Unit, Homerton University Hospital, London, UK
  4. 4Department of Language and Linguistic Science, University of York, York, North Yorkshire, UK
  1. Correspondence to Professor Neil Marlow, Institute for Women's Health, UCL, London WC1E 6AU, UK; n.marlow{at}ucl.ac.uk

Abstract

Objective To understand the dynamics of conversations between neonatologists and parents concerning limitation of life-sustaining treatments.

Design Formal conversations were recorded, transcribed and analysed according to the conventions and methods of conversation analysis.

Setting Two tertiary neonatal intensive care units.

Participants Consultant neonatal specialists and families.

Main outcome measures We used conversation analysis and developed an inductive coding scheme for conversations based on the introduction of limiting life-sustaining treatments and on the parental responses.

Results From recordings with 51 families, we identified 27 conversations about limiting life support with 20 families and 14 doctors. Neonatologists adopted three broad strategies: (1) ‘recommendations’, in which one course of action is presented and explicitly endorsed as the best course of action, (2) a ‘single-option choice’ format (conditional: referring to a choice that should be made, but without specifying or listing options), and (3) options (where the doctor explicitly refers to or lists options). Our conversation analysis-informed coding scheme was based on the opportunities available for parents to ask questions and assert their preference with minimal interactional constraint or pressure for a certain type of response. Response scores for parents presented with conditional formats (n=15, median 5.0) and options (n=10, median 5.0) were significantly higher than for those parents presented with ‘recommendations’ (n=16, median 3.75; p=0.002) and parents were more likely to express preferences (p=0.005).

Conclusion Encouraging different approaches to conversations about limitation of life-supporting treatment may lead to better parent engagement and less misalignment between the conversational partners.

  • neonatology
  • palliative care
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Footnotes

  • Contributors NM and NA conceived the study. NM led the funding application and is the guarantor for the study. All contributors formulated the design and execution of the study. CS and PD carried out conversation analysis, assisted by the clinical members of the team, and analysed the data. CS and KC coded the data. CS and NM wrote the first draft and coordinated the manuscript. All authors were involved in interpretation of the data and writing the report. All have seen and approved the final version.

  • Funding The study was funded by a Programme Development Grant from the National Institute for Health Research and a project grant from Sands. The study was sponsored by University College London. NM receives part funding from the Department of Health’s NIHR Biomedical Research Centre’s funding scheme at UCLH/UCL.

  • Disclaimer The funding bodies played no part in the conception, design, analysis or preparation of research outputs.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval The study received approval from London-City & East Research Ethics Committee (12/LO/1949).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement Data sharing not applicable as no data sets generated and/or analysed for this study. No data are available for sharing.

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