Baby C’s parents had done their research. They had read widely about different options for C and had clear views about what they felt would be best for their child. They had asked a number of doctors in this country, but none were willing to provide the treatment. After contacting some specialists overseas, they had found one expert who agreed. If the family were able to pay for treatment, he was willing to provide that treatment option.
However, when C’s local doctors discovered that the parents planned to leave the country for treatment the doctors embarked on court proceedings and contacted the police.
One of the questions highlighted in the Charlie Gard case has been whether his parents should be free to travel overseas for desired experimental treatment. It has been claimed that the NHS and Great Ormond St are “keeping him captive”. Why shouldn’t C’s parents be free to travel to access a medical treatment option? When, if ever, should a state intervene to prevent medical tourism?
On the face of it, stopping patients or parents from undertaking medical tourism appears to violate two important freedoms – the freedom to travel and the freedom to make decisions about medical treatment. There might be reasons for a country not to provide a particular treatment option – for example because it is unaffordable within a public healthcare system, or because doctors in that country do not approve of it, or lack experience or expertise in providing it. But why should patients or parents be prevented from accessing treatment overseas. If they are able to pay, and the overseas doctors are willing to treat, why is it anyone else’s business?
These arguments might (or might not) persuade in the case of experimental medical treatment for Charlie Gard. But here are a number of other possible versions of the ‘C’ case:
- Gender reassignment. C is a four year old who apparently identifies as transgender. C’s parents have arranged for him to travel to Australia for hormone treatment, and surgical gender reassignment.
- Female genital cutting. C is a 2 year old girl whose mother had a form of female genital cutting as a young child. Her parents have arranged for travel to Sudan where a local doctor is prepared to provide the procedure.
- Ashley procedure. C is a profoundly cognitively impaired 7 year old. Her parents have identified a specialist in the US who is prepared to provide hormone treatment to reduce C’s growth, as well as surgery to remove developing breast tissue and her uterus. C’s parents hope that these treatments will make C easier to care for.
- C is a 9 year old boy with a terminal neurodegenerative disorder. He has progressive neurological decline and is no longer able to communicate. His parents wish to travel to Belgium to access euthanasia.
All of the cases above are of children. Why is this relevant? For medical tourism involving adults we might think that the state should only intervene in an individual’s freedom to avoid harm to others. If an individual’s competent decision to receive medical treatment affects only themselves, it is somewhat hard to see why a government should prohibit someone travelling to obtain that treatment, or should prosecute them subsequently. In the case of so-called ‘suicide tourism’, there is the further complication that the patient himself or herself is usually beyond the reach of the law once they have availed themselves of euthanasia/assisted suicide in another country (though someone who assists them to travel could still be charged).
But focussing on children makes it clearer that there could be strong reasons to prohibit overseas medical choices. In at least some of the examples that I have given above, there could be significant concerns that the parents’ decisions to pursue treatment overseas would be harmful to the child. It is right to limit parents’ freedoms in order to avoid harm to a child, for example, prohibiting female genital cutting. It seems problematic that parents could get around a law focused on avoiding harm to a child by taking their child overseas.
There are complex issues here (beyond the scope of this blog) around international law and the interaction between different jurisdictions. However, in simple terms, the laws of a country apply to its citizens, and provide limits on behaviour as well as legal protections that apply even when the citizens are beyond the country’s borders. In the case of parents taking a child overseas for a prohibited medical option, it seems that the parents (if citizens) could be guilty of a crime in their home country, and that the child (if a citizen) should be protected from being the victim of a crime.
One option, (labelled “Exit” by Glenn Cohen in an excellent article on this topic), would be for individuals to renounce their citizenship. That would potentially allow someone to access options available overseas, without being subject to the laws of their original country. It could potentially be thought to apply to children too – though in practice a number of countries (eg US, UK) do not allow minors to renounce citizenship until they have reached the age of 16 to 18.
For some highly controversial issues, on which a community has divided views, one option would be to specifically allow patients to access that option overseas. For example, the Irish Constitution includes a subsection (focused on the rights of fetuses and on abortion), specifying that women have a right to obtain information about treatment available overseas and have a right to travel. Another compromise is to elect not to prosecute citizens who access prohibited medical options overseas. In the UK, while it remains illegal to do so, there have been no prosecutions of people for helping someone to travel overseas to obtain assisted suicide. It isn’t clear, though that this applies to children. Guidance from the UK director of public prosecutions implies that prosecution would be more likely in the case of a patient <18 years.
If particular medical treatment options for a child are clearly unlawful, and if the prohibitions on those options are valid, it seems justified for doctors and the courts intervening to prevent parents from travelling to obtain that option. This would seem to apply at least to cases 2 and 4 above.
But some controversial options may be legally as well as ethically grey. It isn’t clear what the legal status would be of gender reassignment surgery for a young child in the UK or of the Ashley treatment. If such treatment were requested, court approval might well be sought, and the court would assess whether such treatment were in the best interests of the child. It isn’t clear what the decision would be (in one review of UK court applications for sterilisation in intellectually disabled children and adults in the 1990s, 80% of full court reviews resulted in a decision that treatment was in the best interests of a patient with intellectual disability). If the court decided that it wouldn’t be in a child’s best interests to have gender reassignment or the Ashley procedure, it would then be unlawful to perform those procedures for that child. For example, if parents had gone to court for permission to perform the Ashley procedure, and this had been declined by the court – it would appear reasonable to stop the parents from travelling with C in order to circumvent the legal decision.
But what about where there has been no court decision, no determination either way? If a medical option isn’t clearly contrary to the law, and there are qualified overseas health professionals willing to provide a treatment, perhaps doctors shouldn’t intervene? (If that is the case, it may suggest that parents would be better to take their children overseas before a court reaches a decision – in case they determine that the option would not be in the child’s interests).
It isn’t obvious what the right answer is in that situation, and it may be that there isn’t a general answer – rather that it depends on the case. The key question is whether doctors feel that there is a risk of significant harm from the proposed treatment (or from forgoing treatment currently being provided in the UK). Professional bodies, such as the GMC, require doctors to notify child protection agencies if they suspect risk of harm, even if not certain. In the case of early gender reassignment surgery or the Ashley treatment, there does seem to be a risk of harm from the procedures, albeit it isn’t clear whether that harm outweighs the benefits. If doctors learned that a family planned to take a child overseas for the Ashley treatment, they would be justified in notifying child protection authorities of the concern for possible harm.
Returning to experimental treatment, and to the current controversial Charlie Gard case, one question worth asking might be why the treatment isn’t available in the UK. If nucleoside treatment for Charlie’s form of mitochondrial disorder is not available because it isn’t affordable within the NHS, or because doctors in the UK have no experience in providing it – that does not necessarily constitute a reason to suspect harm. It wouldn’t provide a reason to stop him accessing treatment overseas. That may apply to many forms of experimental treatment. Perhaps it applied to the proton beam therapy sought by Ashya King’s parents in 2014?
However, from court transcripts the reason that no UK specialists were willing to provide experimental treatment for Charlie appears to be because they genuinely felt that it posed no benefit and a significant risk of harm to him to continue life support. They may or may not have been correct in that judgment. That question of the benefits and risks of nucleoside treatment for Charlie remains to be adjudicated in the High court next week. The fact that overseas specialists are prepared to provide treatment is clearly relevant to the court determination about whether treatment would be in Charlie’s best interests. However, given their views about treatment, the doctors at Great Ormond Street had no choice. They were ethically and legally obliged to seek court intervention and to try to stop Charlie’s parents from travelling with him to America – at least until the court had reached a decision.
Further reading:
Glenn Cohen Circumvention Tourism Cornell Law Review 2012
Thanks Dom for an excellent contribution to this debate which really spells out the challenges of medical tourism. I would like to elaborate on one point. You say, “the doctors at Great Ormond Street had no choice.” I have no idea of the quality or basis of their deliberations. Few details have been released. We have been repeatedly told not to comment on that case because we don’t know the details. Whether they had a choice or not depends on how they arrived at their position. In the Lancet piece I wrote on this at the outset, I said deliberations about these issues (before we reach a conclusion about what ought to be done), should follow the principles of reflective equilibrium involving rational deliberators, who are empathetic and willing to revise their own moral views, or adjust the confidence they have that they are right. That is, reflective equilibrium requires a degree of epistemic and moral humility: that is, avoidance of overconfidence that we know the truth, either about the facts, or about moral positions. So whether they had a choice depends on whether a choice was open after engaging in reflective equilibrium. Should doctors report people for wanting to take their child overseas to excise her clitoris. Yes, because we can be confident that they are wrong. Should they report parents to the police or courts for wanting to take their male child overseas for circumcision when doctors in the UK won’t perform it. I think circumcision is wrong, but I am not so confident that this should become a legal matter. Good old attempts at moral persuasion are probably sufficient. What about parents who want euthanasia for a dying infant, when this would be performed by a responsible doctor in the Netherlands or Belgium, when it is illegal in the UK? Should doctors pre-emptively report parents who believe in euthanasia? I guess that depends on how confident we can be that they are wrong, after engaging in reflective equilibrium. One thing is sure: medicine has been dominated in the past by a lack of epistemic and moral humility, and by arrogance and paternalism. Perhaps it is time to wind back a bit when it comes to medical tourism in general. What these cases do need is ethical deliberation, not imposition of raw, brute moral opinion.
Thanks Julian,
In the case of parents taking a child overseas for euthanasia – there are different views about whether that would or could be morally justified.
Nevertheless, it is very clearly against the law in the UK. I think that a professional who became aware that parents had such a plan would be legally obliged to notify to child protection authorities. (Legally more qualified readers may correct me). I strongly suspect that they would be reportable to the GMC if they knew and failed to act. Whatever we think of the rights and wrongs of euthanasia in such a case, a professional would be taking some personal risk in turning a blind eye to the anticipated euthanasia of a British child. (They might choose to do so, as a form of conscientious objection to a law with which they do not agree. However, in doing so they would (and arguably should) be subject to sanction).
It is much more ambiguous in the case of parents taking a child overseas for innovative, experimental or just plain controversial treatment, where that isn’t illegal.
I think you are right that professionals should be cautious about imposing their own moral judgments about treatment onto parents, and should take into account diverging views about what would be reasonable in a particular case. (They shouldn’t merely fall back on their own view of what is ‘reasonable’). However, if, after undertaking reflective equilibrium, they remain convinced that the treatment is not reasonable and is contrary to the child’s interests, they are professionally, ethically, and probably legally obliged to intervene.
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