This essay on the Alfie Evans case was the main part of my Observer column this week. (The column included also a short piece on the IAAF’s new regulations on women athletes with elevated testosterone levels.) It was published in the Observer, 29 April 2018, under the headline ‘A court is an unfit place for a case like Alfie Evans and its moral complexity’.
It would be difficult not to share the heartbreak of Alfie Evans’ parents. Alfie was a 23-month-old child who suffered from an undiagnosed degenerative disease that had led to a ‘catastrophic degradation of his brain tissue’. Yesterday he died.
Doctors at Liverpool’s Alder Hey children’s hospital, deeming that there was no possibility of recovery, had wanted for almost 10 months to switch off Alfie’s ventilation machine. His parents, Tom Evans and Kate James, disagreed, and fought through the courts both to maintain ventilation and to transfer him to a foreign hospital. Last week, a high court judge sided with the doctors.
In being pushed through the adversarial court system, the intense private anguish of the parents was turned into a grotesque public spectacle; a spectacle further polarised by religious leaders and politicians jumping on the bandwagon and whipping up emotions. The often abusive responses towards both Alder Hey medical staff and Alfie’s parents reveal once again the growing Twitterification of life.
Disputes between parents and doctors are becoming more common, thanks to social and medical changes. In such disputes, someone inevitably has to make the final decision. The trouble is, institutions designed to pronounce on criminal cases, and on legal issues, are not necessarily best placed to make judgments on complex moral dilemmas in which there may be no single ‘right’ answer.
The problem is made worse by confusion over the criteria that courts use. In a medical case such as Alfie’s, a judge can overrule parents’ wishes if they are deemed not to be in the child’s ‘best interests’.
However, if social workers want to take a child into care then the criterion is not that of best interests but of ‘harm’. Even if parents are deemed not to be acting in the child’s best interests, a judge can only overrule their wishes if he is satisfied that, in the words of the 1989 Children Act, the child will ‘suffer significant harm’.
It seems incongruous that the criteria are so different in these cases. This was precisely the argument made by Alfie’s parents. As the supreme court judges summed up the parents’ view: ‘If significant harm (or its likelihood) has to be established before a child can be removed – perhaps only temporarily – from the home of his parents under a care order, why does it not need to be established before he can be removed, permanently, from them and from everything in this world, by death?’
It was a good question, and one the court failed properly to answer. The judges claimed that a higher threshold was required in imposing a care order ‘to avoid social engineering’. That seems an ad hoc argument with little real substance.
Usually, a decision about a child’s best interests involves two alternative futures. Is she, for instance, better off with her mother or father after divorce? Where courts have to decide whether to turn off life support, however, the choice is between a possible future and a definite non-future. After death, the child has no interests to debate.
This issue was at the heart of the tragic case of Charlie Gard last year. Charlie suffered from a rare genetic condition that caused catastrophic brain damage. Doctors wanted to switch off life support. His parents disagreed, pinning their hopes on an experimental treatment in the US, of which British doctors were sceptical. The courts decided it was not in Charlie’s best interests to receive further treatment and he should be permitted to die with dignity.
That decision may have been correct. But to deny the parents the right to treat Charlie further surely required particularly strong evidence that to do so would cause him harm?
In Charlie Gard’s case, there was a possibility chance of an alternative treatment (however slight the chance of success). In the case of Alfie Evans, no one expected him to live for long. Nevertheless, both cases highlight the problem of defining ‘best interest’ and of trying to discover it through the court system. It is not clear, for instance, that it would have been against Alfie Evans’ best interest for him to have received palliative care in an Italian hospital, as his parents wanted, rather than in Liverpool.
The courts need both to acknowledge the difficulties in knowing what constitutes ‘best interest’ and be particularly cautious about sanctioning death. At the same time, we need new means of resolving such cases, rather than hoping, as we do now, that institutions designed to provide justice in, for instance, criminal cases can also help unpack delicate moral conundrums.
Update: I thought I had better append a little note here as I spent much of Sunday debating on Twitter with barristers and solicitors and other legal experts, and don’t want to repeat the same arguments here. Yes, I am aware that there is more to the law than simply criminal law, that there are family courts, courts of protection, etc, and that courts often attempt at forms of resolution. The distinction I am drawing here is not between criminal law and everything else. It is between the legal and the moral with respect cases such as that of Alfie Evans. I am using the issue of criminal law as the sharpest expression of the problem I am trying to address. Where there are cases that involve complex moral issues in which there is no single ‘right’ answer, the court system, in my view, is not necessarily the best means of finding a resolution; and this is true even when we are talking of family courts, etc. The ethical and legal issues are distinct (even though they may overlap), and in these kinds of cases we need a system that both focuses on the ethical issues rather than the legal issues, and gives all the parties a sense that they are able fully to participate in the decision-making process. (The fact that, if Twitter is anything to go by, so many lawyers seem to regard abuse as a legitimate form of debate only confirms my view.)
The image is ‘Woman with dead child’ (1903) by Käthe Kollwitz.
Alfie has died, any situation where children die are particularly difficult for parents, in this case the long lasting turmoil is likely to be of a higher level for these parents because of the circumstances, most parents strive to always do their very best for their children, these parents were denied that possibility by the authorities involved at Alder Hey and the state, enforced by that state and it’s agencies.
That is unacceptable state power over parents and extremely dangerous, it reveals that, at the moment, an outside body beyond the NHS /Parents is prepared to deny the parents rights in an authoritarian and completely unreasonable manner, the parents simply wanted to extend treatment that was been offered elsewhere, they did not wish to bring harm or pain to their child, that can medically be alleviated, they only wanted the opportunity, which was offered, to do the best they believed was possible for their child.
This is one of a number of recent cases and there will likely be more where the circumstances differ and raise different questions.
These may appear difficult moral questions because of the human emotions involved, but they are actually socio/political ones.
There will always be situations arising where there is a conflict of interest with serious consequences, it could be because of over zealous hospital administrators and doctors wanting clarity for a variety of reasons, it could be because of over zealous parents with particular beliefs that may indeed cause harm or restrict life chances that could otherwise be enhanced by the medical professionals, or a plethora of other situations.
This indicates there will be specific and hopefully rare events where agreement cannot be achieved by opposing views, even if we do indeed manage to recapture the necessary bond of trust between patients/relatives/doctors etc.
So it seems reasonable that we do require some body that may have to rule over rare disputes where even a trustworthy relationship cannot bridge the gap to resolve differences.
But it absolutely vital that body is accepted by citizens as operating with our consent and indeed accountable to us and that it reflects the majoritarian moral/social and political culture of society. The body of judges and the law is antithetical to this requirement as seem by the actions it is presently taking over a whole series of issues including this one.
There can only be socio/political solutions to removing the obstacles that are preventing the primacy of consent and trust to flourish.
And it is that trust that is been seriously eroded at the moment by the authorities, unnecessarily so in recent cases,which quite logically strikes fear into patients and relatives that we have hovering above us, in life and death situations especially, an authoritarian state,trust cannot be built/rebuilt while this situation exists.
‘the parents simply wanted to extend treatment that was been offered elsewhere, they did not wish to bring harm or pain to their child’
Of course they did not wish it. But the view of the medical carers was that there was a risk of that, for no benefit. That conflict was what required resolution.
This case is a prime example of the bullying power of the state over familial rights. What a disgusting display of bureaucratic indifference and a stunning lack of respect for individual life.
Thoughtful as ever, Kenan. But surely whoever rules on such moral questions, they then have to be enforced. Enforcement can only take place with legal sanction, and is it not preferable that takes place on a case-by-case basis? Perhaps such hearings could take place in an augmented court – with some form of ‘citizens’ panel’ to guide the judge’s decision within the law?