The Charlie Gard Case, and the Ethics of Obstructing International Transfer of Seriously Ill Children

The possibility of transferring a patient to another health care institution has long been seen as a potential solution to intractable disagreement between professionals and families.²⁰  In the North American context, this has sometimes been enshrined in law. For example the Texas Advance Directives Act provides a process-based means of resolving futility disputes.²⁵  According to that process, health professionals may withdraw futile treatment; however, before withdrawal, they have an obligation to assist families in finding an alternative physician or institution willing to provide the desired treatment.²⁵  In 2005, of 65 cases in which the Texas Advance Directives Act process had been invoked and treatment was planned to be withdrawn (because it was futile), 11 patients were transferred to other institutions.²⁶  The 2014 American Thoracic Society policy statement on potentially inappropriate treatment recommends that physicians offer transfer to an alternate institution; moreover, it notes that surrogates have a right to seek such a transfer.⁶  Although such transfers appear to usually occur within the United States, some families have sought international transfer when they were unable to identify providers within the country willing to provide treatment. For example, in the cases of Areen Chakrabarti and Israel Stinson (both diagnosed with brain death), the children were transferred to Guatemala for tracheostomy before later returning to the United States.^27,28 

Because transfer to another institution has been seen by many as an ethical and valuable compromise in the face of treatment disagreement, it may seem striking or incongruous that health professionals would seek to prevent transfer. In earlier UK court cases relating to disputed treatment of children, the possibility of international transfer had not been raised or considered by the court. However, that was explicitly considered in the Charlie Gard case and has also been debated in several subsequent cases.^29–31  In a recent case, it was argued that preventing the child’s transfer would be contrary to her right to free movement within the European Union.³¹  Although that specific legal question was not decisive,³²  the court did permit transfer, and she was subsequently transferred to Italy.

Why should health professionals seek to impede transfer if there are health professionals willing to provide treatment? I will outline 3 ethical arguments in defense of this approach in select cases.

One reason why this question has arisen in relation to cases of treatment of children is because parents’ rights to make medical decisions for their children are more limited than their rights to make decisions about their own health. Pediatricians are familiar with the idea that parents have a central role in decision-making about children’s health care but that there are some situations where they might be overruled. Within a range of situations (sometimes referred to as the “zone of parental discretion”³³ ), treatment may be provided if parents agree to it or withheld if they do not. However, if treatment would certainly be beneficial to a child, and they would be harmed if they do not receive it, parental refusal of treatment should not be accepted.³⁴  Conversely, if providing a treatment would be harmful, it ethically must not be provided, even if parents strongly desire it.³⁵ 

The most familiar situation in which professionals might consider overruling parents relates to refusal of blood transfusion or chemotherapy.^36,37  If parents are declining a therapy that would be life-saving for the child, it is relatively uncontroversial that doctors should seek the involvement of social services and court authorization to provide the treatment.³⁸  In such cases, parents might try to remove their child from the hospital or transfer their child to another facility (eg, one providing alternative medicine). Courts might place a child in the custody of Child Protective Services to prevent this. In some cases, parents flee to avoid court-ordered treatment. For example, Sarah Hershberger was a 10-year-old with leukemia, whose parents refused further treatment after her induction chemotherapy. After the court appointed a guardian, and the parents’ legal appeals were unsuccessful, they fled with her to Mexico.³⁹ 

If parents’ desires for their child fall outside the bounds of the zone of parent discretion, it is justified to prevent parents from harming their child. However, in an individual case (for example that of Charlie Gard) there may be disagreement about whether treatment lies within or outside this zone.^17,20  There may be different views about the relative benefits and harms of the therapy, but there may also be differences about how much discretion parents should have about treatment (ie, how narrow or broad the zone of parental discretion should be). Where that is the case, whose view should prevail?

In the recent UK case of Tafida Raqeeb, parents sought tracheostomy and continued intensive care for their 4-year-old child who was in a minimally conscious state after a ruptured arteriovenous malformation.³¹  One reason for parents seeking treatment in Italy was because they felt that the ethical values of the Italian doctors aligned with their own values. The Italian doctors would apparently continue intensive care as long as Tafida was not brain dead. In contrast, the UK doctors regarded continued treatment as futile.³¹ 

In response to this argument, one of the lawyers representing the hospital argued that:

One concern about this statement is that it implies that it is possible to determine definitively in London what would be in a child’s best interests. That seems too strong. It is frequently the case that there is more than one view about best interests. Assessing what would be best for a child is an ethical and not a scientific evaluation. Indeed, the idea that there is not a single answer to a child’s best interests is one key reason why parents have discretion over treatment.⁴¹  Societies respect parents’ rights to make decisions for their children because they accept that there is not a single right way to raise a child, nor a single right answer of what would be best in many medical decisions. This acceptance and tolerance reflects ethical pluralism: the philosophical view that there are different moral values and consequently different potential answers to ethical questions.

However, admitting that there can be more than one view about best interests does not mean that any view is acceptable. Ethical pluralism is not ethical relativism.⁴²  As already noted, if views about what would be best for a child fall outside the zone of parental discretion, that view should not prevail, no matter how sincerely it is held.

This applies internationally as well as within national borders and can apply to professional views as well as the views of families. Where the views of health professionals in other countries conflict with those in the child’s home country, that can be important to consider in determining the range of reasonable disagreement about a child’s medical care.²⁰  It does not follow, however, that all of those views are equally legitimate or must be respected. It may be, for example, that health professionals in some parts of the world would be happy to support parents who refuse blood transfusions for children with severe anemia. However, this view does not mean that it should be acceptable in the United States or the United Kingdom to allow parental refusal of a life-saving transfusion.

Should patients be able to travel to access medical options that would be prohibited in their home country (eg, abortion, assisted suicide, reproductive therapies)? There are complex legal and ethical issues about the extent to which countries are justified in extending criminal prohibitions internationally to stop citizens from traveling to circumvent the prohibition.⁴³  That is in part because adults should arguably be free to travel and live overseas (assuming those countries are happy to accommodate them) and partly because it may be challenging to enforce laws internationally (particularly in countries that do not share those ethical values). However, even if adults are permitted to undertake such travel, it would seem much more problematic in the case of children.

One relevant example is that of female genital cutting (FGC). Many jurisdictions have banned FGC in children because it is regarded as harmful to the child.^44,45  However, to stop families from traveling to obtain the procedure (“vacation cutting”), countries such as the United States, United Kingdom, and Australia have additionally introduced specific laws to prohibit such travel.⁴⁶ 

Another example might be assisted suicide. Although a number of UK adult patients travel each year to mainland Europe to access assisted dying, UK guidance indicates that prosecution (for example of family or others providing assistance) would be “more likely” if the patient were under the age of 18.⁴⁷ 

If societies have laws in place to prevent harm to children, it seems justified for those societies to use legal mechanisms to prevent families from traveling where it is anticipated that the children would be harmed.

However, even if it is accepted that parents’ refusal of treatment may sometimes be overruled, one distinguishing feature of the Gard case (and several others that have reached the courts in the United Kingdom) is that parents had qualified health professionals who were prepared to provide the treatment. That might seem importantly different to situations in which the parents are refusing all medical care or seeking alternative nonscientifically based therapies. The offer of medical treatment might provide evidence that there is reasonable disagreement about the child’s best interests. Presumably, the professionals in those cases did not believe that the offered treatment would harm the child.

However, the mere fact that the treatment is offered by health professionals does not necessarily mean that it should be permitted. (For example, in a number of countries, FGC is regularly performed by health professionals.⁴⁸  Assisted dying, in countries where this is legal, may also be provided by health professionals.) For potentially life-prolonging treatment, whether travel should be permitted may depend on whether those offering the treatment can provide a clear defensible rationale for reaching a different conclusion than their peers in the home country.²⁰ 

Allowing transfer could facilitate earlier resolution of disagreement and avoid prolonged court cases. In the case of Charlie Gard, the fact that parents had no other alternatives likely contributed to the sequence of legal appeals that took place over a period of several months. Indeed, ironically, it has been suggested that had his parents’ request been granted when first asked, the overall course of treatment of Charlie could have been shortened; his parents may have accepted withdrawal of treatment if the experimental treatment had been tried and shown to have no benefit.²⁰ 

Yet avoiding conflict is not the primary goal of decision-making. The fundamental ethical principle guiding pediatricians is to safeguard and promote a child’s best interests. There are many situations in pediatric practice in which it might lead to less conflict to acquiesce to parental wishes or to transfer a child’s care. However, in some situations, that approach would abrogate the professional’s primary responsibility to the child.

It is justified for health systems to obstruct transfer of children for treatment that is believed would cause harm to the child. Of course, that then leads back to the contested question of whether the treatment requested by parents would be harmful. Doctors and nurses who provide treatment to seriously ill patients are only too aware that such treatment is sometimes extremely unpleasant and can do more harm than good. Where there is good reason to think that a child would experience pain but have no realistic prospect of improvement, further life-prolonging treatment may cause harm.

In the UK court case relating to Tafida Raqeeb, evidence was presented that she was unlikely to be experiencing pain (because of the severity of her brain injury).³¹  The judge authorized the transfer of Tafida in that case because he concluded that she was not likely to be harmed as a result.³¹  Similarly, in cases of children diagnosed as brain dead, it is hard to see that they would be harmed by transfer and tracheostomy (although equally, this seems to offer no benefit). In Charlie Gard’s case, there remains disagreement about whether he would have experienced pain or discomfort from continued intensive care and whether the treatment would have led to harm. If critics are right that this would not have been harmful, the court decision may have been ethically flawed.¹³  In the wake of the Gard case, there has been recent debate in the United Kingdom about whether the legal test in cases of disputed treatment should shift from a “best interests test” to one focused more explicitly on a “harm threshold.”⁴⁹ 

The problem of parent or surrogate requests for “futile” or “potentially inappropriate” treatment continues to be a serious challenge for health professionals. It is a potent cause of moral distress and a frequent reason underlying referrals for ethics consultation.^50,51 

It is, of course, often difficult to evaluate the risks and benefits of treatment, and there may be room for reasonable disagreement. However, where health professionals genuinely believe that a requested course of treatment would be harmful, they have a duty not to provide that treatment themselves. Importantly, that does not exhaust their obligations to the child. If they believe that what parents are proposing for a child would be harmful, doctors are also ethically obliged to oppose transfer of the child, including seeking court assistance if necessary.

FGC

female genital cutting