Charlie Gard was diagnosed with infantile-onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS), an uncommon hereditary illness leading to gradual muscle weakness and brain damage. Charlie also suffered from congenital hearing loss and severe epilepsy. There was a hypothetical prospect that a novel nucleoside therapy might improve Charlie’s prognosis. Great Ormond Street Hospital (GOSH) contemplated making a referral (1) but decided against it when scans showed that Charlie’s brain had been acutely damaged by his illness (2), presumably having progressed to the stage of severe epileptic encephalopathy (3). GOSH regarded nucleoside therapy to be opposed to Charlie’s best interests. His parents acknowledged that if there was zero possibility of an upswing then Charlie’s standard of living was not worth prolonging, but they saw hope in nucleoside therapy, contacted a Professor of Neurology in the United States (US) agreeable to offer it and raised £1.3 million via crowdfunding. The disagreement between GOSH and Charlie’s parents could not be straightened out and the dispute was referred to Mr Justice Francis in the High Court. Four statements were pursued by GOSH: that Charlie lacked capacity, that it was in his best interests for mechanical respiration to be removed, that supportive care should be delivered and that it was against his best interests to receive nucleoside therapy (4). Mr Justice Francis approved the declarations and in the subsequent months, his grant was maintained at three levels of appeal (5), and Charlie died at 11 months in July 2017.
The ruling that untested treatment was against Charlie’s best interests and the withdrawal of life-sustaining treatment (6) was crushing for his parents and hard for their advocates to understand. Many found it unfathomable that a therapy plan, presented and financed unanimously by both parents, which holds a possibility of improving a child’s prognosis could be dismissed. This essay aims to provide a critical analysis of the ethical principles surrounding the Charlie Gard case, with emphasis on limitations of ‘in the best interests’ argument. It highlights opposing advice and examines disparities in approach between clinicians, parents and independent child advocates.
Conflicting ethical principles
There are three rationales behind declining or discontinuing conceivably life-sustaining medical care: the patient rationally declines treatment (autonomy); the anticipated value is insufficient to justify the public resources required to provide treatment (distributive justice); or treatment is not in the patient’s best interests (7).
There is no dispute that Charlie’s parents had control over their son’s treatment, but the fundamental concern that surfaced was: should that control be unconditional and sovereign? Many proponents asserted that parents’ rights and responsibility should be a decisive factor regarding treatment. They claimed that when there is a rational dispute over sustaining life-prolonging treatment, “we should accede to the wishes of the parents and err on the side of a chance of life (8).”
However, British law permits for situations where physicians can pursue their own perspective of a child’s care against the parents’ opinions. The courts established that Charlie’s doctors should be permitted to withdraw his treatment if the treatment had no possibility of a favourable outcome and were putting him in pain or at risk of distress (9). With regards to the welfare of the child, the court assesses what is in the child’s best interests from the child’s point of view. Even though the parents’ opinion is a pertinent element, the court is not compelled to comply with parents’ wishes (10). Besides, the extent of parental rights is restricted where parents do not have ownership of children, as Mr Justice Francis tried very hard to specify in paragraph 18 of his ruling (1). The best interests of the child outweigh the parents’ autonomy. Parents are granted autonomy based on the premise that they act in the child’s best interests, but if parents’ decisions are distinctly opposed to the child’s best interest, then it is only reasonable to disregard them. It is unfair to presume that a child’s view is unlike his parents since a child unopinionated; neither is it right to consider parental viewpoint as the child’s. Essentially, parental autonomy gives parents the power to choose between other feasible options. For instance, the choice of either treatment a with a particular success rate, or treatment b with a better success rate but is more taxing in the short run (11). On the contrary, the choices were unequal in Charlie Gard’s situation as the other only feasible treatment could not be proven as effective.
This is not to discount that the parental opinion is not a significant aspect in ascertaining the child’s well-being. The parental opinion will be held in high regard and possibly be conclusive, but it is widely known that parents in this harrowing situation can find themselves lacking good judgement and be inclined to seek all available options, even if, when perceived impartially, their favoured choice is against the best interest of a child. The fundamental rule is that the child’s best interests must triumph and that must prevail even to situations where parents persistently hang on to a different viewpoint, albeit for the best of intentions (12).
Constraints in medical amenities, such as intensive care, indicates that not everyone who might likely benefit from treatment can be tended to. They must be ordered based on the principle of distributive justice. Therapies with a minimal likelihood of benefit should not be given as they deny someone with a more favourable prognosis. It is less contentious to withhold treatment if it will provide less benefit to one patient compared to another patient than to claim that it provides no benefit at all, particularly when not providing treatment will lead to death. Although nucleoside therapy is inexpensive, at the minimum three months of intensive care would have been required, amounting to roughly £150,000. A 10% possibility of a reduced lifespan of severe disability was the best result predicted by Hirano (13). Fifty years of life at quality 0.3 equal to fifteen quality-adjusted life years (QALYs), which means the predicted value of a 10% possibility of such a life is 1.5 QALYs. This would imply a value of £100,000 per QALY, considerably beyond the prevailing threshold of £30,000 per QALY. This is a legitimate and rational justification for withholding treatment even though the threshold itself is disputable. Hence, despite the fact that it was apparently in Charlie’s interests to receive treatment, it could still be limited on the basis of distributive justice (14).
Nevertheless, there was no basis backed by distributive justice to stop Charlie from receiving treatment in the US because Charlie’s parents have raised sufficient money for his treatment outside the UK. His treatment does not deny others a chance. Therefore, advocates might assert that because we are incapable of discerning whether life will eventually end up being in Charlie’s interests and worth living, it would no longer be justified to deny Charlie his shot at life (15). That being said, an alternative justification for declining treatment would be best interests, which is notably more complicated. The futility of treatment, the likelihood of success is too low as well as the outcome of having a life not worth living are all open for discussion. These might be convincing arguments for discontinuation of treatment and should not be disregarded.
Widely used reasoning for discontinuing treatment based on best interests was that additional treatment would be ineffective. Treatments can be ineffective either because it has no evidence-based reasoning, or because the patient had suffered irreversible damage to their health. Nonetheless, the effectiveness of a treatment is subject to the goals of care (16). In other words, if Charlie’s parents wished to prolong his life for as long as possible or if they considered this as a ground-breaking study on nucleoside therapy that could benefit future patients, then experimental nucleoside therapy may have been regarded as fruitful. On the other hand, if they anticipated him to make a complete neurological recovery, then flying to the US for a novel therapy that had not been proven to be effective for his condition may have been improbable or unwise. Therefore, futility, similar to best interests, is of moderate utility as it cannot elucidate numerous value-based disputes.
In Charlie’s case, there was a hypothetical justification, which both groups of clinicians came to terms with, resulting in GOSH originally planning an ethics committee request to give the therapy a go in January before Charlie experienced multiple seizures. The likelihoods of the treatment being successful were not zero and hence, from a physiological viewpoint, it was worthwhile. Eventually, the determining factor that ended the legal actions against GOSH was the conclusion that his illness had already caused permanent damage. The findings of the muscle imaging done in July brought about a common consensus between the physicians at GOSH, Dr Hirano, and the Vatican’s physician that Charlie’s health was beyond treatment, and his parents received this without demanding any additional court ruling (17). However, we cannot pinpoint specifically when Charlie’s condition became irreversible. Essentially, if a treatment might prolong life span, then it is a subjective assessment based on one’s principles and beliefs, not a medical or scientific opinion, as to whether before-mentioned treatment is useful, and this would be based on more circumstances explained below.
Low likelihood of success
Even if the claim that additional treatment would be ineffective is refuted, it would still be plausible to argue with the second line of reasoning on best interests: that the prospect of recovery, while not zero, was exceedingly slim. The judge in Charlie’s case frequently associated the extremely low probability to zero (1). Still, Dr Hirano asserted that a “vanishingly small” possibility is also the sole chance, with the alternative being death. The question then lies in determining what probability of recovery is considered too low. Would it be 1% or 0.1%? If there is also an extremely low possibility that the treatment would result in acute or extended distress, then even the slightest probability of recovery would seem plausible to treat.
For Charlie’s situation, this was a challenging question. As the legal case was proceeding, Charlie’s welfare was compromised, and he suffered distress associated with the procedures in intensive care (e.g. suctioning, tube feeding, ventilation) and epileptic seizures. Nonetheless, these complications can be handled with medical interventions like sedation and analgesia. His pain was originally controlled without morphine and subsequently with a small dosage, demonstrating that the pain Charlie was experiencing was presumably manageable. Hence, despite the low likelihoods of improvement, it would have been feasible to provide treatment on this basis for a short time in the beginning.
Life not worth living
The third justification for withdrawing treatment that could be against the best interests of a patient is the outcome of having a life not worth living. Despite turning out to be successful, the ideal result obtainable is still not one worth aiming for, with respect to both duration or standard of living. Supporters maintained that if Charlie was responsive and able to feel joy, then his life was worth living as it is considerably better than dying. They also argue that numerous severely disabled people considered their lives to be valuable and there is insufficient evidence to state that prolonging their life is against their best interests (18). On the contrary, others are in favour of acknowledging that even if the treatment were to be successful, Charlie’s anticipated welfare was not worth experiencing if he was unable to interact socially. Together with the judge’s evaluation that a slight hypothetical possibility of success was equivalent to none, it is sound to rationalise that death with dignity would triumph over living a life detached from human connections.
Many critics have mentioned the crucial value of mediation or engaging a different out-of-court method in circumstances like this. There are certainly several cases in which conflict between parents and doctors about the ideal treatment plan is settled agreeably via mediation. In various cases, especially where both parents share the same view, the escalation to court is suggestive of an unresolvable conflict. In spite of that, as Mr Justice Francis emphasised, mediation should be supported so that both parties completely grasp the other perspective. A breakdown in communication between parents and doctors brings about detrimental effects financially, emotionally, and physically. Doctors are also mediators to a great extent. The course of action for treatment is reliant upon mutual contribution and this requires a collaborative synergy. While the responsibility to interact with and advise parents is legally and ethically explicit (19), the discrepancies in the legal approach and the contradictory ethical advice on unproven, novel therapies make the situation more complicated.
In Charlie Gard’s case, professional advice from the General Medical Council (GMC) and Royal College of Paediatrics and Child Health (RCPCH) put forward ambiguities pertaining to the ethics of approving the unsubstantiated therapy. Also, legally, it was uncertain based on the current judicial model that it would fulfil either the best interests test or the Bolam test. All things considered, mediation could not have focussed on determining a middle-ground, for there was no such compromise. Parents may understand their children best, and their wishes may be driven by emotion, optimism, and empathy, but that judgment may still be against the best interests of the child. When communication breaks down, it was reasonable and fitting to take the issue to court. The resolution of inconsistencies in professional advice on permitting novel therapies might aid doctors in explaining and utilising risk-benefit analysis. Clinical ethics committees are crucial to evaluate the ethical tensions between parental autonomy, maleficence, and beneficence. Their objectivity and detachment from the issue are necessary mediation credentials.
With respect to life-prolonging treatment of a young child, best interests are not decided by parents or doctors, but either via a hospital-based procedure of accommodation and negotiation, or a court-based judge ruling. The opinions of parents will frequently triumph others in a hospital setting. Hospitals are reluctant to take matters to court because the physical and psychological effect from the legal case might undermine the child’s best interests. Doctors must be certain that any adverse effects on the child related to going against the opinion of parents are less significant than the adverse effects related to meeting their wishes. As soon as proceedings start, the importance of the parental opinion diminishes. It is pertinent in deciding the child’s well-being and to an extent that as the ruling will affect the involvement of the parent with the child and the impact this will have on the child’s well-being, but because well-being cannot be established in relation to the child’s opinion, principles and desires, clinical characteristics are extremely crucial (20). The case was brought to court for resolution and at this point, the formulation and utilisation of best interests were limited by the obtainable proof and the statements pursued by GOSH. Rather than being mediators, judges are instead restricted by the primary principle of best interests and the need to assess the treatment from the child’s perspective. The final verdict made in Charlie’s best interests would, therefore, be backed by the futility of treatment, low likelihood of success and ultimately having a life not worth living.
- Courts and Tribunals Judiciary (2017) Great Ormond Street Hospital -v- Yates and Gard judgment 24 July 2017, High Court of Justice, Family Division: Courts and Tribunals Judiciary.
- Great Ormond Street Hospital for Children (2017) Latest statement on Charlie Gard, Available at: https://www.gosh.nhs.uk/news/latest-press-releases/latest-statement-charlie-gard (Accessed: 12 February 2019).
- In the Matter of Charles Gard  EWCA Civ 410 .
- European Court of Human Rights (2017) GARD AND OTHERS v. THE UNITED KINGDOM, Strasbourg: European Court of Human Rights.
- The Supreme Court (2017) Permission to appeal hearing, Available at: https://www.supremecourt.uk/news/permission-to-appeal-hearing-in-the-matter-of-charlie-gard.html (Accessed: 12 February 2019).
- Judiciary of England and Wales (2017) Decision and short reasons to be released to the media in the case of Charlie Gard, Available at: https://www.judiciary.uk/wp-content/uploads/2017/04/gard-press-summary-20170411.pdf (Accessed: 12 February 2019).
- thebmjopinion (2017) Julian Savulescu and Peter Singer: Unpicking what we mean by best interests in light of Charlie Gard, Available at: https://blogs.bmj.com/bmj/2017/08/02/unpicking-what-we-mean-by-best-interests-in-light-of-charlie-gard/ (Accessed: 12 February 2019).
- Julian Savulescu and Peter Singer (2017) Charlie Gard: Why Donald Trump and the Pope are right, Available at: https://www.abc.net.au/news/2017-07-13/charlie-gard-donald-trump-and-the-pope-are-right/8706390 (Accessed: 12 February 2019).
- Arthur Caplan and Kelly McBride Folkers (2017) ‘Charlie Gard and the Limits of Parental Authority’, Hastings Center Report, 47(5), pp. 15-16.
- Royal Courts of Justice (2006) An NHS Trust v MB & Anor, High Court of Justice, Family Division: Royal Courts of Justice.
- Iain Brassington (2017) ‘Charlie Gard: An Ethical Analysis of a Legal Non-Problem’, Journal of Medical Ethics, -(-), pp. -.
- Sean Morrison (2017) ‘Charlie Gard: Judges who ruled baby’s life support should be withdrawn publish conclusion as parents hope for Supreme Court fight’, Evening Standard, 5 June.
- BBC (2017) ‘Charlie Gard has 10% chance of improvement, US doctor claims’, BBC, 13 July.
- DJC Wilkinson and J Savulescu (2011) ‘Knowing when to stop: futility in the intensive care unit’, Curr Opin Anaesthesiol, 24(2), pp. 160-165.
- J Savulescu (2017) ‘Is it in Charlie Gard’s best interest to die?’, The Lancet, 389(10082), pp. 1868-1869.
- Jessica du Toit and Franklin Miller (2015) ‘The Ethics of Continued Life‐Sustaining Treatment for those Diagnosed as Brain‐dead’, Bioethics, 30(3), pp. 151-158.
- Telegraph Reporters (2017) ‘Charlie Gard: Mother’s full statement – ‘we are so sorry that we couldn’t save you”, The Telegraph, 24 July.
- Bruno, M.A., Bernheim, J.L., Ledoux, D., Pellas, F., Demertzi, A. and Laureys, S., 2011. A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: happy majority, miserable minority. BMJ open, 1(1), p.e000039.
- Rob Heywood (2012) ‘PARENTS AND MEDICAL PROFESSIONALS: CONFLICT, COOPERATION, AND BEST INTERESTS’, Medical Law Review, 20(1), pp. 29-44.
- Royal Courts of Justice (2017) D (A Child), Court of Appeal, Civil Division: Royal Courts of Justice.