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Charlie Gard

Richard Innes, Hugh Montgomery, Jim Bolton, Matthew Rowland, Andrew Hannam, Simon Lindsay, Paul Sankey
This series of articles provides a practical guide to dealing with the complex ethical and legal challenges we face in the provision of Intensive Care. They explain the implications of recent legal rulings and cases (such as "Montgomery" and the tragic case of Charlie Gard), and include discussion of clinical scenarios with which we are all familiar. Each article is written by those who are not only experts in their fields, but who also deal with these issues on a day-to-day basis.
February 2019: Journal of the Intensive Care Society
John J Paris, Brian M Cummings, M Patrick Moore
"Compassion and mercy" are important values for humanizing medicine. There are limits, however, in their ability to help resolve disputes between physicians and families regarding appropriate end-of-life care. The recent cases of Charlie Gard and Alfie Evans in England highlight the issue. The English courts resolve such conflicts by an independent assessment of a court. The American judicial system does not share the centralized system of the English courts. In the United States Federal structure some 50 state legislatures and 50 state court systems go their separate ways...
January 2019: Journal of Perinatology: Official Journal of the California Perinatal Association
Ian Freckelton
The end-of-life litigation involving Alfie Evans (9 May 2016 - 28 April 2018) from Liverpool, England, who suffered from an incurable and degenerative neurological condition was extraordinary. It emerged in the shadow of comparable but not as extensive litigation enabled by crowdfunding in relation to Ashya King and Charlie Gard. Although Alfie's parents lost repeatedly in the High Court, the Court of Appeal and the Supreme Court of England, as well as before the European Court of Human Rights, they persisted in bringing more legal challenges...
July 2018: Journal of Law and Medicine
Ian Freckelton
Decision-making about seriously ill and dying children is fraught and distressing for all concerned. The United Kingdom saga involving Charlie Gard and the ruling by four courts hat in his best interests he should not receive experimental therapy overseas provides many lessons for how such controversies should and should not be handled. This editorial places the case in historical and legal context and traces the evolution of the disputation about the treatment to be provided to Charlie, including through the courts and in the media...
November 2017: Journal of Law and Medicine
Thaddeus Mason Pope
No abstract text is available yet for this article.
July 2018: Journal of Medical Ethics
Richard Huxtable
Law's processes are likely always to be needed when particularly intractable conflicts arise in relation to the care of a critically ill child like Charlie Gard. Recourse to law has its merits, but it also imposes costs, and the courts' decisions about the best interests of such children appear to suffer from uncertainty, unpredictability and insufficiency. The insufficiency arises from the courts' apparent reluctance to enter into the ethical dimensions of such cases. Presuming that such reflection is warranted, this article explores alternatives to the courts, and in particular the merits of specialist ethics support services, which appear to be on the rise in the UK...
July 2018: Journal of Medical Ethics
John J Paris, Brian M Cummings, Michael P Moreland, Jason N Batten
No abstract text is available yet for this article.
July 2018: Journal of Medical Ethics
Giles Birchley
The case of Charlie Gard, an infant with a genetic illness whose parents sought experimental treatment in the USA, brought important debates about the moral status of parents and children to the public eye. After setting out the facts of the case, this article considers some of these debates through the lens of parental rights. Parental rights are most commonly based on the promotion of a child's welfare; however, in Charlie's case, promotion of Charlie's welfare cannot explain every fact of the case. Indeed, some seem most logically to extend from intrinsic parental rights, that is, parental rights that exist independent of welfare promotion...
July 2018: Journal of Medical Ethics
Gabrielle Dressler, Sarah A Kelly
Patients are increasingly turning to medical crowdfunding as a way to cover their healthcare costs. In the case of Charlie Gard, an infant born with encephalomyopathic mitochondrial DNA depletion syndrome, crowdfunding was used to finance experimental nucleoside therapy. Although this treatment was not provided in the end, we will argue that the success of the Gard family's crowdfunding campaign reveals a number of potential ethical concerns. First, this case shows that crowdfunding can change the way in which communal healthcare resources are allocated...
July 2018: Journal of Medical Ethics
Eliana Close, Lindy Willmott, Benjamin P White
Much of the commentary in the wake of the Charlie Gard litigation was aimed at apparent shortcomings of the law. These include concerns about the perceived inability of the law to consider resourcing issues, the vagueness of the best interests test and the delays and costs of having disputes about potentially life-sustaining medical treatment resolved by the courts. These concerns are perennial ones that arise in response to difficult cases. Despite their persistence, we argue that many of these criticisms are unfounded...
July 2018: Journal of Medical Ethics
Jo Bridgeman
This article critically examines the legal arguments presented on behalf of Charlie Gard's parents, Connie Yates and Chris Gard, based on a threshold test of significant harm for intervention into the decisions made jointly by holders of parental responsibility. It argues that the legal basis of the argument, from the case of Ashya King, was tenuous. It sought to introduce different categories of cases concerning children's medical treatment when, despite the inevitable factual distinctions between individual cases, the duty of the judge in all cases to determine the best interests of the child is firmly established by the case law...
July 2018: Journal of Medical Ethics
Raanan Gillon
This paper argues that Charlie Gard's parents should have been the decision-makers about their son's best interests and that determination of Charlie's best interests depended on a moral decision about which horn of a profound moral dilemma to choose. Charlie's parents chose one horn of that moral dilemma and the courts, like Charlie Gard's doctors, chose the other horn. Contrary to the first UK court's assertion, supported by all the higher courts that considered it, that its judgement was 'objective', this paper argues that the judgement was not and could not be 'objective' in the sense of objectively correct but was instead a value judgement based on the judge's choice of one horn of the moral dilemma...
July 2018: Journal of Medical Ethics
Dominic Wilkinson, Julian Savulescu
No abstract text is available yet for this article.
May 1, 2018: BMJ: British Medical Journal
Aaron Rothstein, Ariane Lewis
The case of Charlie Gard, an infant who was hospitalized in England due to a mitochondrial DNA depletion syndrome that led to an epileptic encephalomyopathy, was highly publicized. Though Charlie's parents lobbied for him to receive experimental nucleoside replacement therapy as a desperate effort to save him, this request was denied, and after a lengthy legal battle, he died in late July 2017. We discuss the ethical considerations and consequences of this case.
May 1, 2018: Neurology
Hugo Lagercrantz
No abstract text is available yet for this article.
May 2018: Archives of Disease in Childhood
Alberto Giannini, Paola Cogo, Bruno Bembi, Paolo Biban, Ezio Bonanomi, Daniela Codazzi, Daniela Concolino, Cristina Giugni, Andrea Messeri, Rossella Parini, Andrea Pettenazzo, Corrado Viafora, Cristina Zaggia, Martin Langer
No abstract text is available yet for this article.
February 2018: Minerva Anestesiologica
Aaron Wightman, Jennifer Cobelli Kett, Benjamin S Wilfond
No abstract text is available yet for this article.
June 2018: Acta Paediatrica
Lainie Friedman Ross, Alissa Hurwitz Swota
This article explores the intersection of pediatric bioethics and child rights by examining the best interest standard as it operates within the pediatric bioethics framework in the United States and the child rights framework based on the UN 1989 Convention on the Rights of the Child (CRC). While the "best interest of the child" standard is central to both pediatric bioethics and the child rights community, it operates only as a guidance principle, and not as an intervention principle, in decision-making within U...
2017: Perspectives in Biology and Medicine
Natasha Hammond-Browning
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.
December 2017: Journal of Bioethical Inquiry
Ann Gallagher
No abstract text is available yet for this article.
November 2017: Nursing Ethics
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