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Open Access 01-12-2017 | Recent Developments

When Doctors and Parents Don’t Agree: The story of Charlie Gard

Author: Natasha Hammond-Browning

Published in: Journal of Bioethical Inquiry | Issue 4/2017

Abstract

This discussion follows a series of high profile cases involving a terminally ill child, Charlie Gard. These cases are significant as they trace the complexities that arise when parents and medical teams do not agree as well as addressing the question of whether there is a right to access experimental treatment.

The two grounds which were refused permission to appeal are Ground 3, the assertion that the judge fell into error in conducting the “best interests” evaluation, and Ground 5, that the parents and the legal team were placed at an unfair disadvantage as a result of late disclosure of documents. These were unarguable (Yates and Gard v Great Ormond Street Hospital [2017] EWCA Civ 410, [36]).

It is recognized that many media sources did refer to the proposed treatment as experimental although few referred to the fact that this treatment had not even been tested on mice. For example, the Daily Mail provided an extensive review of the court proceedings, but omitted the lack of research that the proposed treatment had gone through (Moore and Greenhill 2017).

Al-Othman, H. 2017. The High Court has ruled that this baby should be allowed to die. BuzzFeedNews, April 11. https://www.buzzfeed.com/hannahalothman/the-high-court-has-ruled-that-this-baby-should-be-allowed?utm_term=.uq28GA2vx#.iaW5QzqXD. Accessed April 14, 2017.

GoFundMe. 2017. Please help to save Charlie’s life. https://www.gofundme.com/please-help-to-save-charlies-life. Accessed April 30, 2017.

Great Ormond Street Hospital (GOSH). GOSH’s Position Statement Hearing 24 July 2017. http://www.gosh.nhs.uk/news/latest-press-releases/gosh-position-statement-issued-high-court-24-july-2017. Accessed July 24, 2017.

Jayaram, R. 2017. Would Charlie Gard really have survived if he’s been treated sooner? Here’s the sad truth. The Independent, July 26. http://www.independent.co.uk/voices/charlie-gard-gosh-hirano-would-he-have-survived-a7861531.html. Accessed July 26, 2017.

Moore, C., and S. Greenhill. 2017. Baby Charlie’s parents sob as court-appointed guardian tells judge that he should be allowed to die despite £1.2million raised to send him to US for treatment. Daily Mail, April 7. http://www.dailymail.co.uk/news/article-4389784/High-Court-judge-rule-fate-baby-Charlie-today.html. Accessed April 07, 2017.

Phillips, M. 2017. A cruel and ignorant campaign. MelaniePhillips.com, July 26. http://www.melaniephillips.com/cruel-ignorant-campaign/. Accessed July 26, 2017.

Richards, B. 2016. Medical innovation laws: An unnecessary innovation. Australian Health Review 40(3): 282–285.

Smith-Squire, A. 2017. Charlie Gard’s parents condemn Great Ormond Street’s “inhuman” treatment of their son and say that they have been stripped of their parental rights as they release new picture at his bedside. Daily Mail Online, May 29. http://www.dailymail.co.uk/news/article-4553188/Charlie-Gard-s-parents-condemn-hospital-s-treatment-son.html. Accessed May 29, 2017.

Smith-Squire, A., and S. Roberts. 2017. “If we were British our son would be dead” American couple whose son survived thanks to the therapy Charlie Gard’s parents are fighting for slam controversial court ruling. The Sun, April 12. https://www.thesun.co.uk/living/3318065/arthur-olga-estopinan-arturito-charlie-gard-court-case/. Accessed April 12, 2017.

Telegraph Reporters. 2017. Charlie Gard’s mother asks judge to give critically ill baby “one shot at life.” The Telegraph, April 7. http://www.telegraph.co.uk/news/2017/04/07/charlie-gards-parents-set-discover-have-won-high-court-fight/. Accessed April 07, 2017.

Title: When Doctors and Parents Don’t Agree: The story of Charlie Gard
Author: Natasha Hammond-Browning
Publication date: 01-12-2017
Publisher: Springer Netherlands
Published in: Journal of Bioethical Inquiry / Issue 4/2017
Print ISSN: 1176-7529
Electronic ISSN: 1872-4353
DOI: https://doi.org/10.1007/s11673-017-9814-9

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When Doctors and Parents Don’t Agree: The story of Charlie Gard

Abstract

Keynote webinar | Spotlight on medication adherence

Springer Medicine

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