Who Knows Best (Interests)? The Case of Charlie Gard

Cave, Emma; Nottingham, Emma

doi:10.1093/medlaw/fwx060

Who Knows Best (Interests)? The Case of Charlie Gard

Cave, Emma; Nottingham, Emma

Authors

Professor Emma Cave emma.cave@durham.ac.uk
Professor

Emma Nottingham

Abstract

When baby Charlie Gard was diagnosed with a rare mitochondrial disease, his parents located a Professor of Neurology in the USA willing to provide nucleoside therapy which offered a theoretical chance of improvement and successfully raised £1.3 million through crowd funding. The decision that unproven therapy was contrary to Charlie Gard’s best interests and that life-sustaining treatment should be withdrawn was devastating for his parents and difficult for their supporters to comprehend. The decision was upheld at three levels of appeal and Charlie died in July 2017 aged 11 months. This commentary provides a critical analysis of the legal principles surrounding unproven treatment and application of the best interests test in the different contexts of hospital and court. It draws attention to conflicting guidance and explores differences in approach in relation to unproven treatment for adults lacking capacity and children.

Citation

Cave, E., & Nottingham, E. (2018). Who Knows Best (Interests)? The Case of Charlie Gard. Medical Law Review, 26(3), 500-513. https://doi.org/10.1093/medlaw/fwx060

Journal Article Type	Article
Acceptance Date	Nov 14, 2017
Online Publication Date	Dec 15, 2017
Publication Date	Aug 1, 2018
Deposit Date	Nov 14, 2017
Publicly Available Date	Dec 15, 2019
Journal	Medical Law Review
Print ISSN	0967-0742
Electronic ISSN	1464-3790
Publisher	Oxford University Press
Peer Reviewed	Peer Reviewed
Volume	26
Issue	3
Pages	500-513
DOI	https://doi.org/10.1093/medlaw/fwx060

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Copyright Statement
This is a pre-copyedited, author-produced PDF of an article accepted for publication in Medical Law Review following peer review. The version of record Cave, Emma & Nottingham, Emma (2018). Who Knows Best (Interests)? The Case of Charlie Gard. Medical Law Review 26(3): 500-513 is available online at: https://doi.org/10.1093/medlaw/fwx060.