The end of a chapter
25 July 2017
Great Ormond Street Hospital v Yates and Gard –  EWHC 1909 (Fam) – read judgment
“A lot of things have been said, particularly in recent days, by those who know almost nothing about this case but who feel entitled to express opinions. Many opinions have been expressed based on feelings rather than facts.”
So said Francis J, when dealing with an unusual application by Great Ormond Street Hospital (Gosh) asking for an order, rather than a declaration, that Charlie Gard should be allowed to slip away quietly. The involvement of the White House, the Vatican, the Bambino Gesu Children’s Hospital in Rome and Dr. Hirano and the associated medical centre in the USA in this story demonstrates the fact that a mere declaration carries too much ambiguity to allow the hospital staff to do what the courts have approved. The terms in which Gosh put its application were unambiguous indeed:
Therefore orders are sought to remove any ambiguity; orders are enforceable. Despite all of the hospitals best endeavours, this appears as potentially necessary. Not for the first time the parents through their solicitors raised the prospect of criminal proceedings against the hospital and its staff. The Hospital understands that no court order best interests proceedings can afford it or its staff from prosecution.
Throughout this case, the judge has made it clear that he can only change the decision that he made on 11 April on the basis of compelling new evidence. Such evidence has not been put before him. As a result of Dr Hirano’s visit to see Charlie, the child underwent further MRI scans of his entire body and it transpired that ‘in some places Charlie now has no muscle at all, and in other places there is significant replacement of muscle by fat.’ As a result,
The parents have had to face the reality, almost impossible to contemplate; that Charlie is beyond any help even from experimental treatment and that it is in his best interests for him to be allowed to die. Given the consensus that now exists between parents, the treating doctors and even Dr Hirano, it is my very sad duty to confirm the declarations that I made in April this year, and I now formally do so.
Addressing the question arguably at the core of the Charlie Gard case, Francis J laid out the circumstances in which the parents’ autonomy over their own child can and must sometimes be overridden by the state, in the form of its medical services, this intervention supervised by the courts. The “absurd” notion that gained traction in recent days that Charlie has somehow been a prisoner of the NHS, or that the NHS has the power to decide Charlie’s fate is quite the opposite of the truth. Most of the time, parents make decisions about what is in the best interests of their children and “so it should be”. Just occasionally, however,
there will be circumstances such as here where a hospital and parents are unable to decide what is in the best interests of a child who is a patient at that hospital. It is precisely because the hospital does not have power in respect of that child that this hospital makes an application to the court, to an independent judge, for a determination of what is in that child’s best interests. In circumstances where there is a dispute between parents and the hospital, it was essential that Charlie was himself independently represented and a guardian was therefore appointed to represent Charlie so that there was someone who could independently report to the court as to what was in his best interests. Our judges are fiercely independent of the state and make decisions, having heard evidence and having considered the law.
The ruling of the High Court, with the assistance of the expert evidence put before them by the doctors and staff at Great Ormond Street Hospital, should have been, and now is, the end of a very sad story.
Charlie could have been cured. Pity the parents did not take up the offer abroad.
Stella H Howell: but that is the whole point of the case: the parents could not make that decision because our law did not allow them. They wanted to take up the offer but the hospital authoritatively ruled against it. In case of dispute between parents and hospital, hospital has the final say according to our law! It is amazing how many people are still not even aware of this extreme legal situation! That is why I argued above that the law, as it is violates a number of human rights.
Has One Crown Row Office run out of secretaries, again?
Identifying the valid law is only the first, necessary step in examining compatibility of the rules with human rights as you will appreciate; a valid law (in force) still does not mean that a human rights violation is absent unfortunately. “There are rules and reasons for the rules” as D. Kennedy said. “Legal reasoning refers to interpretative fidelity of judges who are bound by the legal formulation of the right; the duty to be faithful to it in their interpretation and application; this duty is counterbalanced so to speak by legislative duty, which is appealing to the political values of the community.” („A Critique of Adjudication‟ 1997). In other words, the principal problem with the legal determinations that refer to identifying the valid law only is that we do not (often) question the secondary purpose of the rules, only the primary ones.
Human race have seen unfortunately many instances of extreme violations of human dignity by sticking to a crude positivism; this is neither the place nor occasion to remind the readers of those episodes. Describing myself as a “progressive positivist”, my principal problem with the case relates to the wisdom of circumventing biological parents’ views, position and intention in the final determination of their child’s fate or in the context of the case what the” best interest” of the child should be. I am not questioning the expertise; opposite I do believe that it was surely given in good faith and that it was correct. I am questioning the rationale for ignoring, almost humiliating and inflicting further and unbearable psychological pain on the parents by rejecting their intention to try an alternative treatment? Why would this particular aspect be left for the final determination to an authority other than biological parents? The reason is actually pretty obvious, but it is somehow absent from the debates: it is pragmatism, a political choice, apology and the protection of domestic institutions, rather than any particular moral standing or a result of widely debated issue in the society. And this is why inevitably the legal determination may conflict with human rights.
During this tragic episode it often reverberated in my mind: “What makes the GOSH so special? It has a lot of toys and it doesn’t smell funny”. Is it that we bring hope to thousands of children with complex and life threatening illnesses”? (GOSH advert) .And then a financial plea at the end…see: https://www.youtube.com/watch?v=BpphGTnt42c ).
“Of course, I will not allow the parents to go somewhere else for help because that may have negative consequences for the trust people have in my own hospital”. OK, I see, but this does not mean that there is no tension between this political convenience and human rights; opposite, there is a pretty serious potential problem with this. For the sake of widening the debate I am going to suggest the following potential tensions between this pragmatism and human rights:
1. Article 3 ECHR – appointing a guardian absent situations of inappropriateness, child abuse or other illegal patterns of behaviour by parents inherently constitutes a degrading treatment.
2. Article 2 ECHR – an authoritative determination that no alternative treatment exists conflicts with a positive duty to protect life.
3. Article 6 ECHR – a lack of sufficiently independent body to rule on the rationale of such legal determination.
4. Article 8 ECHR – for obvious violation of respect for private and family life.
I am including the family’s part of the statement that fits into my position and argument below:
“Charlie had a real chance of getting better. It’s now unfortunately too late for him but it’s not too late for others with this horrible disease and other diseases. We will continue to help and support families of ill children and try and make Charlie live on in the lives of others. We owe it to him to not let his life be in vain’.
R.I.P. lovely boy!
Quality of life must be considered in all such cases, and Charlies would have been very poor indeed, I am bound to wonder if the journey to the USA would have been too much for the little lad.
We cannot prolong life where there is suffering and zero chance of a full recovery, simply for selfish reasons. Having said that, my sympathy goes out to Charlies parents.
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