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 September 25, 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 September 25, 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 situations where they might be there may also be differences about pluralism: the philosophical view that overruled. Within a range of how much discretion parents should there are different moral values and situations (sometimes referred to as have about treatment (ie, how narrow consequently different potential the “zone of parental discretion”33), or broad the zone of parental answers to ethical questions. treatment may be provided if parents discretion should be). Where that is However, admitting that there can be agree to it or withheld if they do not. the case, whose view should prevail? more than one view about best However, if treatment would certainly fi interests does not mean that any view be beneficial to a child, and they In the recent UK case of Ta da is acceptable. Ethical pluralism is not would be harmed if they do not Raqeeb, parents sought tracheostomy ethical relativism.42 As already noted, receive it, parental refusal of and continued intensive care for if views about what would be best treatment should not be accepted.34 their 4-year-old child who was in for a child fall outside the zone of Conversely, if providing a treatment a minimally conscious state parental discretion, that view should would be harmful, it ethically must after a ruptured arteriovenous 31 not prevail, no matter how sincerely not be provided, even if parents malformation. One reason for it is held. strongly desire it.35 parents seeking treatment in Italy was because they felt that the ethical This applies internationally as well as The most familiar situation in which values of the Italian doctors aligned within national borders and can apply professionals might consider with their own values. The Italian to professional views as well as the overruling parents relates to refusal of doctors would apparently continue views of families. Where the views 36,37 fi blood transfusion or chemotherapy. intensive care as long as Ta da was of health professionals in other If parents are declining a therapy that not brain dead. In contrast, the UK countries conflict with those in the would be life-saving for the child, it is doctors regarded continued child’s home country, that can be 31 relatively uncontroversial that doctors treatment as futile. important to consider in determining should seek the involvement of social the range of reasonable disagreement In response to this argument, one of services and court authorization to about a child’s medical care.20 It does 38 the lawyers representing the hospital provide the treatment. In such cases, not follow, however, that all of those argued that: parents might try to remove their child views are equally legitimate or must from the hospital or transfer their child If it is right that more ventilation is not ’ ’ be respected. It may be, for example, to another facility (eg, one providing in the child s best interests, it wouldn t be in their best interests wherever the that health professionals in some alternative medicine). Courts might ventilation is provided… If it is not in parts of the world would be happy to place a child in the custody of Child her best interests in London, it is not in support parents who refuse blood Protective Services to prevent this. In her best interests in Cornwall, Leeds, transfusions for children with severe fl some cases, parents ee to avoid court- America, Rome or Canada or anywhere anemia. However, this view does not else.40 ordered treatment. For example, Sarah mean that it should be acceptable in Hershberger was a 10-year-old with One concern about this statement is the United States or the United leukemia, whose parents refused that it implies that it is possible to Kingdom to allow parental refusal of further treatment after her induction determine definitively in London a life-saving transfusion. chemotherapy. After the court what would be in a child’s best ’ appointed a guardian, and the parents interests. That seems too strong. It is 3. Circumvention Tourism legal appeals were unsuccessful, they frequently the case that there is more Should patients be able to travel to fl 39 ed with her to Mexico. than one view about best interests. access medical options that would be Assessing what would be best for prohibited in their home country 2. Ethical Pluralism and Ethical a child is an ethical and not (eg, abortion, assisted suicide, Relativism a scientific evaluation. Indeed, the reproductive therapies)? There are If parents’ desires for their child fall idea that there is not a single answer complex legal and ethical issues outside the bounds of the zone of to a child’s best interests is one key about the extent to which countries

Downloaded from www.aappublications.org/news by guest on September 25, 2021 S56 WILKINSON are justified in extending criminal Kingdom) is that parents had promote a child’s best interests. prohibitions internationally to stop qualified health professionals who There are many situations in pediatric citizens from traveling to circumvent were prepared to provide the practice in which it might lead to less the prohibition.43 That is in part treatment. That might seem conflict to acquiesce to parental because adults should arguably be importantly different to situations in wishes or to transfer a child’s care. free to travel and live overseas which the parents are refusing all However, in some situations, that (assuming those countries are happy medical care or seeking alternative approach would abrogate the to accommodate them) and partly nonscientifically based therapies. The professional’s primary responsibility because it may be challenging to offer of medical treatment might to the child. enforce laws internationally provide evidence that there is (particularly in countries that do not reasonable disagreement about the share those ethical values). However, child’s best interests. Presumably, the CONCLUSIONS: PREVENTING HARM even if adults are permitted to professionals in those cases did not It is justified for health systems to undertake such travel, it would seem believe that the offered treatment obstruct transfer of children for much more problematic in the case of would harm the child. treatment that is believed would children. However, the mere fact that the cause harm to the child. Of course, One relevant example is that of treatment is offered by health that then leads back to the contested female genital cutting (FGC). Many professionals does not necessarily question of whether the treatment jurisdictions have banned FGC in mean that it should be permitted. requested by parents would be children because it is regarded as (For example, in a number of harmful. Doctors and nurses who harmful to the child.44,45 However, to countries, FGC is regularly performed provide treatment to seriously ill stop families from traveling to obtain by health professionals.48 Assisted patients are only too aware that such the procedure (“vacation cutting”), dying, in countries where this is legal, treatment is sometimes extremely countries such as the United States, may also be provided by health unpleasant and can do more harm United Kingdom, and Australia have professionals.) For potentially life- than good. Where there is good additionally introduced specific laws prolonging treatment, whether travel reason to think that a child would to prohibit such travel.46 should be permitted may depend on experience pain but have no realistic whether those offering the treatment prospect of improvement, further life- Another example might be assisted can provide a clear defensible prolonging treatment may suicide. Although a number of UK rationale for reaching a different cause harm. adult patients travel each year to conclusion than their peers in the mainland Europe to access assisted In the UK court case relating to Tafida home country.20 dying, UK guidance indicates that Raqeeb, evidence was presented that prosecution (for example of family or Avoiding Prolonged Conflict she was unlikely to be experiencing others providing assistance) would be pain (because of the severity of her Allowing transfer could facilitate “more likely” if the patient were brain injury).31 The judge authorized earlier resolution of disagreement under the age of 18.47 the transfer of Tafida in that case and avoid prolonged court cases. In because he concluded that she was If societies have laws in place to the case of Charlie Gard, the fact that not likely to be harmed as a result.31 prevent harm to children, it seems parents had no other alternatives Similarly, in cases of children justified for those societies to use likely contributed to the sequence of diagnosed as brain dead, it is hard to legal mechanisms to prevent families legal appeals that took place over see that they would be harmed by from traveling where it is anticipated a period of several months. Indeed, transfer and tracheostomy (although that the children would be harmed. ironically, it has been suggested that equally, this seems to offer no had his parents’ request been granted benefit). In Charlie Gard’s case, there when first asked, the overall course of IN FAVOR OF TRANSFER remains disagreement about whether treatment of Charlie could have been he would have experienced pain or shortened; his parents may have Professional and Institutional discomfort from continued intensive accepted withdrawal of treatment if Support care and whether the treatment the experimental treatment had been However, even if it is accepted that would have led to harm. If critics are tried and shown to have no benefit.20 parents’ refusal of treatment may right that this would not have been sometimes be overruled, one Yet avoiding conflict is not the harmful, the court decision may have distinguishing feature of the Gard primary goal of decision-making. The been ethically flawed.13 In the wake case (and several others that have fundamental ethical principle guiding of the Gard case, there has been reached the courts in the United pediatricians is to safeguard and recent debate in the United Kingdom

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