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‘Best interests’ in paediatric intensive care: an empirical ethics study

OBJECTIVE: In English paediatric practice, English law requires that parents and clinicians agree the ‘best interests’ of children and, if this is not possible, that the courts decide. Court intervention is rare and the concept of best interests is ambiguous. We report qualitative research exploring...

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Autores principales: Birchley, Giles, Gooberman-Hill, Rachael, Deans, Zuzana, Fraser, James, Huxtable, Richard
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Archives of Disease in Childhood 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5739819/
https://www.ncbi.nlm.nih.gov/pubmed/28408466
http://dx.doi.org/10.1136/archdischild-2016-312076
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author Birchley, Giles
Gooberman-Hill, Rachael
Deans, Zuzana
Fraser, James
Huxtable, Richard
author_facet Birchley, Giles
Gooberman-Hill, Rachael
Deans, Zuzana
Fraser, James
Huxtable, Richard
author_sort Birchley, Giles
collection PubMed
description OBJECTIVE: In English paediatric practice, English law requires that parents and clinicians agree the ‘best interests’ of children and, if this is not possible, that the courts decide. Court intervention is rare and the concept of best interests is ambiguous. We report qualitative research exploring how the best interests standard operates in practice, particularly with decisions related to planned non-treatment. We discuss results in the light of accounts of best interests in the medical ethics literature. DESIGN: We conducted 39 qualitative interviews, exploring decision making in the paediatric intensive care unit, with doctors, nurses, clinical ethics committee members and parents whose children had a range of health outcomes. Interviews were audio-recorded and analysed thematically. RESULTS: Parents and clinicians indicated differences in their approaches to deciding the child’s best interests. These were reconciled when parents responded positively to clinicians’ efforts to help parents agree with the clinicians’ view of the child’s best interests. Notably, protracted disagreements about a child’s best interests in non-treatment decisions were resolved when parents’ views were affected by witnessing their child’s physical deterioration. Negotiation was the norm and clinicians believed avoiding the courts was desirable. CONCLUSIONS: Sensitivity to the long-term interests of parents of children with life-limiting conditions is defensible but must be exercised proportionately. Current approaches emphasise negotiation but offer few alternatives when decisions are at an impasse. In such situations, the instrumental role played by a child’s deterioration and avoidance of the courts risks giving insufficient weight to the child’s interests. New approaches to decision making are needed.
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spelling pubmed-57398192018-01-03 ‘Best interests’ in paediatric intensive care: an empirical ethics study Birchley, Giles Gooberman-Hill, Rachael Deans, Zuzana Fraser, James Huxtable, Richard Arch Dis Child Original Article OBJECTIVE: In English paediatric practice, English law requires that parents and clinicians agree the ‘best interests’ of children and, if this is not possible, that the courts decide. Court intervention is rare and the concept of best interests is ambiguous. We report qualitative research exploring how the best interests standard operates in practice, particularly with decisions related to planned non-treatment. We discuss results in the light of accounts of best interests in the medical ethics literature. DESIGN: We conducted 39 qualitative interviews, exploring decision making in the paediatric intensive care unit, with doctors, nurses, clinical ethics committee members and parents whose children had a range of health outcomes. Interviews were audio-recorded and analysed thematically. RESULTS: Parents and clinicians indicated differences in their approaches to deciding the child’s best interests. These were reconciled when parents responded positively to clinicians’ efforts to help parents agree with the clinicians’ view of the child’s best interests. Notably, protracted disagreements about a child’s best interests in non-treatment decisions were resolved when parents’ views were affected by witnessing their child’s physical deterioration. Negotiation was the norm and clinicians believed avoiding the courts was desirable. CONCLUSIONS: Sensitivity to the long-term interests of parents of children with life-limiting conditions is defensible but must be exercised proportionately. Current approaches emphasise negotiation but offer few alternatives when decisions are at an impasse. In such situations, the instrumental role played by a child’s deterioration and avoidance of the courts risks giving insufficient weight to the child’s interests. New approaches to decision making are needed. Archives of Disease in Childhood 2017-10 2017-04-13 /pmc/articles/PMC5739819/ /pubmed/28408466 http://dx.doi.org/10.1136/archdischild-2016-312076 Text en © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted. This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/
spellingShingle Original Article
Birchley, Giles
Gooberman-Hill, Rachael
Deans, Zuzana
Fraser, James
Huxtable, Richard
‘Best interests’ in paediatric intensive care: an empirical ethics study
title ‘Best interests’ in paediatric intensive care: an empirical ethics study
title_full ‘Best interests’ in paediatric intensive care: an empirical ethics study
title_fullStr ‘Best interests’ in paediatric intensive care: an empirical ethics study
title_full_unstemmed ‘Best interests’ in paediatric intensive care: an empirical ethics study
title_short ‘Best interests’ in paediatric intensive care: an empirical ethics study
title_sort ‘best interests’ in paediatric intensive care: an empirical ethics study
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5739819/
https://www.ncbi.nlm.nih.gov/pubmed/28408466
http://dx.doi.org/10.1136/archdischild-2016-312076
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