The Charlie Gard Case, and the Ethics of Obstructing International Transfer of Seriously Ill Children
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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: dominic.wilkinson@philosophy.ox.ac.uk
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.
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SUPPLEMENT ARTICLE PEDIATRICS Volume 146, number s1, August 2020:e20200818KDisputes 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;
new.1,2 There has been extensive institution has long been seen as moreover, it notes that surrogates
ethical analysis over several decades a potential solution to intractable have a right to seek such a transfer.6
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
for such treatment.3–6 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
futility dispute, albeit one attracting to assist families in finding an to the United States.27,28
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
(Table 1). Elements of the case treatment.25 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,
elsewhere.8–20 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
decisive,32 the court did permit
to reduction in the biochemical defect and severity of clinical phenotype.22 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
Francis ruled in favor of the hospital.23 Charlie’s 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
President Trump and Pope Francis and a number of international medical and scientific 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 Charlie’s 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
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PEDIATRICS Volume 146, number s1, August 2020 S55treatment 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
In the recent UK case of Tafida interests does not mean that any view
be beneficial to a child, and they
Raqeeb, parents sought tracheostomy is acceptable. Ethical pluralism is not
would be harmed if they do not
and continued intensive care for ethical relativism.42 As already noted,
receive it, parental refusal of
their 4-year-old child who was in if views about what would be best
treatment should not be accepted.34
a minimally conscious state for a child fall outside the zone of
Conversely, if providing a treatment
after a ruptured arteriovenous parental discretion, that view should
would be harmful, it ethically must
malformation.31 One reason for not prevail, no matter how sincerely
not be provided, even if parents
parents seeking treatment in Italy it is held.
strongly desire it.35
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
blood transfusion or chemotherapy.36,37 intensive care as long as Tafida 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
relatively uncontroversial that doctors treatment as futile.31 important to consider in determining
should seek the involvement of social the range of reasonable disagreement
services and court authorization to In response to this argument, one of
about a child’s medical care.20 It does
provide the treatment.38 In such cases, the lawyers representing the hospital
not follow, however, that all of those
parents might try to remove their child argued that:
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 parts of the world would be happy to
ventilation is provided… If it is not in
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
some cases, parents flee to avoid court- America, Rome or Canada or anywhere
anemia. However, this view does not
ordered treatment. For example, Sarah else.40
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
fled with her to Mexico.39 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
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S56 WILKINSONare 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. cause harm to the child. Of course,
However, the mere fact that the
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 prolonging treatment may
can provide a clear defensible
suicide. Although a number of UK cause harm.
rationale for reaching a different
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
Professional and Institutional shortened; his parents may have
discomfort from continued intensive
Support accepted withdrawal of treatment if
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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requests for “futile” or “potentially Society for Intensive Care Medicine; learning from the Charlie Gard case.
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PEDIATRICS Volume 146, number s1, August 2020 S59The Charlie Gard Case, and the Ethics of Obstructing International Transfer of
Seriously Ill Children
Dominic Wilkinson
Pediatrics 2020;146;S54
DOI: 10.1542/peds.2020-0818K
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Downloaded from www.aappublications.org/news by guest on September 7, 2021The Charlie Gard Case, and the Ethics of Obstructing International Transfer of
Seriously Ill Children
Dominic Wilkinson
Pediatrics 2020;146;S54
DOI: 10.1542/peds.2020-0818K
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