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The Charlie Gard Case, and the Ethics of Obstructing International Transfer of Seriously Ill Children Dominic Wilkinson, MBBS, Dphil

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The Charlie Gard Case, and the Ethics of Obstructing International Transfer of Seriously Ill Children Dominic Wilkinson, MBBS, Dphil The Charlie Gard Case, and the Ethics of Obstructing International Transfer of Seriously Ill Children Dominic Wilkinson, MBBS, DPhil abstract In 2017, the court case over medical treatment of UK infant, Charlie Gard, reached global attention. In this article, I will analyze one of the more distinctive elements of the case. The UK courts concluded that treatment of Charlie Gard was not in his best interests and that it would be permissible to withdraw life-sustaining treatment. However, in addition, the court ruled that Charlie should not be transferred overseas for the treatment that his parents sought, even though specialists in Italy and the US were willing to provide that treatment. Is it ethical to prevent parents from pursuing life-prolonging treatment overseas for their children? If so, when is it ethical to do this? I will outline arguments in defense of obstructing transfer in some situations. I will argue, however, that this is only justified if there is good reason to think that the proposed treatment would cause harm. Faculty of Philosophy, Oxford Uehiro Centre for Practical Ethics, University of Oxford, Oxford, United Kingdom; John Radcliffe Hospital, Oxford, United Kingdom; and Murdoch Children’s Research Institute, Melbourne, Victoria, Australia Dr Wilkinson conceptualized and designed the study, drafted the initial manuscript, and approved the final manuscript as submitted. DOI: https://doi.org/10.1542/peds.2020-0818K Accepted for publication May 18, 2020 Address correspondence to Dominic Wilkinson, Oxford Uehiro Centre for Practical Ethics, Suite 8, Littlegate House, St Ebbes St, Oxford OX1 1PT, United Kingdom. E-mail: [email protected] PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275). Copyright © 2020 by the American Academy of Pediatrics FINANCIAL DISCLOSURE: The author has indicated he has no financial relationships relevant to this article to disclose. FUNDING: Mr Wilkinson was supported for this work by a grant from the Wellcome trust, WT106587/Z/14/Z. The funder had no role in the preparation of this manuscript or the decision to submit for publication. POTENTIAL CONFLICT OF INTEREST: The author has indicated he has no potential conflicts of interest to disclose. Downloaded from www.aappublications.org/news by guest on October 2, 2021 SUPPLEMENT ARTICLE PEDIATRICS Volume 146, number s1, August 2020:e20200818K Disputes between parents and INTERNATIONAL TRANSFER AND Thoracic Society policy statement on doctors over treatment regarded FUTILITY DISPUTES potentially inappropriate treatment “ ” by professionals as futile or The possibility of transferring recommends that physicians offer “ ” potentially inappropriate are not a patient to another health care transfer to an alternate institution; 1,2 new. There has been extensive institution has long been seen as moreover, it notes that surrogates 6 ethical analysis over several decades a potential solution to intractable havearighttoseeksuchatransfer. of the challenge in determining disagreement between professionals Although such transfers appear to whether treatment is “futile” and in and families.20 In the North American usually occur within the United States, responding to parental requests context, this has sometimes been some families have sought international 3–6 for such treatment. These enshrined in law. For example the transfer when they were unable to disagreements occur in many Texas Advance Directives Act identify providers within the country countries and have sometimes led to provides a process-based means of willing to provide treatment. For prolonged and bitter court cases.7 resolving futility disputes.25 example, in the cases of Areen According to that process, health Chakrabarti and Israel Stinson (both The 2017 dispute over treatment of professionals may withdraw futile diagnosed with brain death), the British infant Charlie Gard appears in treatment; however, before children were transferred to Guatemala many respects to be a paradigm withdrawal, they have an obligation for tracheostomy before later returning 27,28 futility dispute, albeit one attracting to assist families in finding an to the United States. almost unprecedented levels of global alternative physician or institution Because transfer to another media and social media attention willing to provide the desired institution has been seen by many as 25 (Table 1). Elements of the case treatment. In 2005, of 65 cases in an ethical and valuable compromise have been analyzed in some detail which the Texas Advance Directives in the face of treatment disagreement, 8–20 elsewhere. In this article, I will Act process had been invoked and it may seem striking or incongruous focus on the question of whether it is treatment was planned to be that health professionals would seek ethical for doctors to try to prevent withdrawn (because it was futile), 11 to prevent transfer. In earlier UK parents from pursuing life-prolonging patients were transferred to other court cases relating to disputed treatment overseas for their children. institutions.26 The 2014 American treatment of children, the possibility of international transfer had not been raised or considered by the court. TABLE 1 Case Summary and Timeline However, that was explicitly Charlie Gard was born in August 2016. He developed early signs of muscle weakness at a few weeks of considered in the Charlie Gard case age and by 2 months of age was admitted to hospital with poor feeding, failure to thrive, and and has also been debated in several – respiratory failure. He was ventilated and admitted to intensive care, where investigations led to subsequent cases.29 31 In a recent diagnosis of infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). case, it was argued that preventing The specific form of MDDS in Charlie Gard had previously been reported in ∼15 infants, with typical ’ features including early onset, rapid progression and death in infancy.21 The clinicians caring for the child s transfer would be contrary Charlie felt that his prognosis was extremely poor and counseled his parents that life-sustaining to her right to free movement within treatment should be withdrawn. the European Union.31 Although that In early 2017, Charlie’s parents identified a potential experimental treatment. In animal models, specific legal question was not supplementation with deoxypryrimidine nucleosides in the myopathic form of MDDS apparently led 32 22 decisive, the court did permit to reduction in the biochemical defect and severity of clinical phenotype. A US physician involved in the nucleoside research offered to provide treatment, and Charlie’s parents raised funds for Charlie transfer, and she was subsequently to travel to the United States. transferred to Italy. However, Charlie’s doctors were not happy with him being transferred overseas for treatment. They applied to the Family Division of the High Court on February 28 for permission to withdraw life support and to provide palliative care. Charlie’s parents opposed this plan. On April 11, Justice OBSTRUCTING TRANSFER 23 ’ Francis ruled in favor of the hospital. Charlies family appealed, and the decision was reviewed (and Why should health professionals seek upheld) in the Court of Appeal (May 23), Supreme Court (June 8), and European Court of Human Rights (June 20).24 to impede transfer if there are health At that stage, all avenues of legal appeal had been exhausted, and plans were made to withdraw professionals willing to provide medical treatment. treatment? I will outline 3 ethical After widespread public and media attention, statements of support for the family were made by arguments in defense of this fi President Trump and Pope Francis and a number of international medical and scienti c experts. On approach in select cases. July 10, the hospital elected to bring the case back to the high court. The court arranged for the US mitochondrial specialist to review Charlie in London. After a multidisciplinary meeting and new 1. Parental Discretion Over ’ evidence that Charlies condition had considerably worsened, on July 24, his parents accepted that Treatment Is Constrained further treatment could not help him and withdrew their application to the court. Adapted from Wilkinson D, Savulescu J. Ethics, Conflict and Medical Treatment for Children: from Disagreement to One reason why this question has Dissensus. Amsterdam, Netherlands: Elsevier; 2018. arisen in relation to cases of Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 146, number s1, August 2020 S55 treatment of children is because parent discretion, it is justified to reason why parents have discretion parents’ rights to make medical prevent parents from harming their over treatment.41 Societies respect decisions for their children are more child. However, in an individual case parents’ rights to make decisions for limited than their rights to make (for example that of Charlie Gard) their children because they accept decisions about their own health. there may be disagreement about that there is not a single right way to Pediatricians are familiar with the whether treatment lies within or raise a child, nor a single right answer idea that parents have a central role outside this zone.17,20 There may be of what would be best in many in decision-making about children’s different views about the relative medical decisions. This acceptance health care but that there are some benefits and harms of the therapy, but and tolerance reflects ethical
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