Savulescu J. Is it in Charlie Gard's best interest to die? Lancet. 2017 May 13;389(10082):1868-1869.
On April 11, 2017, the High Court in London, UK, ruled that it is in Charlie Gard's best interests to stop treatment and die. High Court Judge Mr Justice Francis explained: “although the parents have parental responsibility, overriding control is vested in the court exercising its independent and objective judgment in the child's best interests”. 9-month-old Charlie Gard has mitochondrial DNA depletion syndrome and the court ruling, which is being challenged by his parents, allows withdrawal of life-support treatment. Charlie Gard's parents have raised funds for experimental treatment in the USA with nucleoside replacement therapy. In his ruling, the judge referred to a previous judgment: “There is a strong presumption in favour of a course of action which will prolong life, but that presumption is not irrebuttable. The term ‘best interests’ encompasses medical, emotional, and all other welfare issues.” In other judgments, life has been deemed not in the child's interests when it would be “intolerable to the child” and “bound to be full of pain and suffering”.
It is not clear, however, what these criteria mean and whether Charlie Gard's life meets them. Charlie Gard's life currently lacks wellbeing, and he experiences discomfort related to treatment in intensive care (suctioning, tube feeding, ventilation, etc) and epileptic seizures. However, these difficulties can be managed with medical treatment, such as sedation and analgesia. His capacity for experiencing pleasure and engagement in social relationships is unclear. However, many severely disabled people, even on long-term ventilation, value their lives and it is not clear that continued life is against their interests.
Experimental nucleoside replacement therapy, which the parents wish to seek in the USA, offers a very small but non-zero chance of some improvement. The claim that Charlie Gard's life is objectively against his best interests turns, crucially, on the claim that a very small chance of a small improvement is outweighed by the suffering attending his condition and its treatment. But this not an “objective fact” but a value judgment. There is space for reasonable disagreement. For example, is a one in 10 000 chance of improvement worth some months of “unpleasantness”, of needles and invasive procedures? There is inevitably the escape to euphemisms like “death with dignity”.
Having spent 20 years in medical ethics, I do believe some lives are intolerable and not worth living, but this is extremely rare. The best example is severe dystrophic epidermolysis bullosa. In this condition, the skin relentlessly peels off, causing extreme pain and infection. In the most severe form, the child often dies of infection in the first year of life, even with medical therapy. Severe pain is an intrinsic part of the syndrome; this situation is not the case in Charlie Gard.
How should value judgments be made? Philosopher John Rawls described a process of reflective equilibrium. This involves developing principles (such as the best interests principle and those of distributive justice) and concepts (such as wellbeing and a life worth living), but crucially revising these in line with intuitions about specific cases, such as Charlie Gard's. This process is what judges engage in but judges, or doctors, are not necessarily or exclusively ethical experts.
Rawls described the qualities of people who should be engaged in reflective equilibrium. They should be knowledgeable about the relevant facts. Importantly, they should be “reasonable”: first, being willing to use logic; second, being disposed to find reasons for and against a solution; third, having an open mind; fourth, making a conscientious effort to overcome intellectual, emotional, and moral prejudices. Lastly, Rawls argued that they are to have “sympathetic knowledge…of those human interests which, by conflicting in particular cases, give rise to the need to make a moral decision”.
A group of such people outside the medical and legal professions might either conclude a slim chance of life was worth taking or that they do not know.
Consider the following thought experiment in support of the claim that it is not known whether Charlie Gard's life really is “intolerable”. Imagine that there is a baby with mitochondrial DNA depletion syndrome like Charlie Gard in the USA. However, he was already being treated with nucleoside replacement. He has been deeply sedated. He spends nearly all of his day unconscious on a breathing tube. Once every few days, his sedation is lightened to see if there is any improvement in his condition. Doctors have agreed with parents that if after 6 months of this treatment there is no improvement, they will stop artificial ventilation and allow this baby to die. Are these doctors acting in a cruel and inhumane manner? Should courts intervene to protect the baby's best interests? Is this baby being forced to live a life that is intolerable? Should the experimental treatment and artificial ventilation be stopped and this baby be allowed to “die with dignity” now?
In my view, the answer to all these questions is no. Presumably, many babies have been treated in similar circumstances. Yet we might also believe it would be reasonable for Charlie Gard's parents to have chosen to forgo experimental treatment and allow him to die. Thus, it could be reasonable to give or not give Charlie a trial of therapy. One need not argue that treatment is in the best interests of Charlie Gard. It is enough to say we don't know whether life will turn out to be in his interests and worth living. In that case, other considerations, such as the interests or desires of his family, the social value of engaging in experimentation, or distributive justice should dictate what is done.
Limitations in medical resources, such as intensive care, mean not everyone can be treated who might possibly benefit. They must be distributed according to a principle of distributive justice. Treatments with a very low chance of benefit should not be provided because they deny someone with a much better prognosis. It is less controversial to limit treatment because it will provide less benefit to this patient than to someone else (justice), than to argue it provides no benefit at all, especially when not treating will result in death (interests). “Futility” is better conceived as a decision about justice, than an interest in death. Thus, even if it were clearly in Charlie Gard's interests to receive treatment, it could still be withheld on the grounds of distributive justice. But those grounds do not apply because Charlie Gard's parents have raised funds to cover his treatment outside the UK. His chance does not deny others a chance. We are left with no grounds for denying Charlie Gard his chance of life.
Judges must make a decision in these kinds of cases. The decision of High Court Judge Mr Justice Francis was reasonable, as Dominic Wilkinson argues in an accompanying Comment. But in light of the appeal by the parents of Charlie Gard, a different judge might reasonably decide the opposite.