Great Ormond Street Hospital v Constance Yates and Others
| Jurisdiction | England & Wales |
| Judge | Mr. Justice Francis |
| Judgment Date | 11 April 2017 |
| Neutral Citation | [2017] EWHC 972 (Fam) |
| Docket Number | Case No. FD17P00103 |
| Court | Family Division |
| Date | 11 April 2017 |
[2017] EWHC 972 (Fam)
IN THE HIGH COURT OF JUSTICE
FAMILY DIVISION
Royal Courts of Justice
Mr. Justice Francis
(In Public)
Case No. FD17P00103
Ms. D. Powell QC (of Counsel) appeared on behalf of the Applicant.
Ms. S. Roper (of Counsel) appeared on behalf of the Respondents.
Ms. V. Butler-Cole (of Counsel) appeared on behalf of the Guardian.
JUDGMENT (as approved by the Judge)
DECISION AND SUMMARY REASONS
I start by just reminding everybody that this case is subject to agreed reporting restriction orders that have been made in order to protect the anonymity of the medical team and those that have given second opinions, both here and abroad. In the event of any doubt as to the nature and scope of those reporting restrictions, please obtain a copy of the orders made from any of the lawyers involved in the case.
I extend my thanks to the members of the press who have attended this hearing for their understanding of the sensitive issues that arise in this case and the need to protect the confidentiality of the medical staff involved, both here and abroad. It has been agreed also, and I so ordered, that the identity of Charlie's Guardian should remain confidential.
Following discussions with counsel acting for Charlie's parents, it has been agreed that I shall give my decision with brief reasons now and then adjourn for a short time before I give my full judgment. This note, which I am going to read now and then which I am going to distribute, is intended to be a summary of the decision; but any reporting of the case should be based on my full judgment shortly to be delivered in open court, subject to those reporting restrictions.
This, as we all know, is the final hearing of an application by the Great Ormond Street Hospital for Children NHS Foundation Trust, pursuant to the inherent jurisdiction of the court, in relation to Charles Gard (known to all as "Charlie") who was born on 4 th August 2016 and who is therefore just over eight months old.
By their application dated 24 th February 2017, the applicants ask the court to make the following orders:
(1) That Charlie, by reason of his minority, lacks capacity to make decisions regarding his medical treatment;
(2) that it is lawful, and in Charlie's best interests, for artificial ventilation to be withdrawn;
(3) that it is lawful, and in Charlie's best interests, for his treating clinicians to provide him with palliative care only; and
(4) that it is lawful, and in Charlie's best interests, not to undergo nucleoside therapy provided always that the measures and treatments adopted are the most compatible with maintaining Charlie's dignity.
Plainly, by reason of his age, it is not in issue that Charlie lacks capacity to make decisions regarding his medical treatment. Charlie has been represented throughout this hearing by his Guardian and by very experienced counsel.
The parents have been represented by experienced and dedicated solicitors and counsel who have acted pro bono and I wish publicly to pay tribute to them for their excellent assistance to the court and, I am sure, to their clients.
Great Ormond Street Hospital has been represented throughout by very experienced leading counsel.
Charlie's parents, Constance Yates (known as "Connie") and Chris Gard, oppose the orders that are sought by the applicants.
The matter came before the court on 3 rd March this year when I adjourned the proceedings so that Connie and Chris could file their evidence, and in particular obtain evidence from the USA, as to the treatment that might possibly be available for Charlie. When Chris started his evidence, he described himself as Charlie's proud father. I am in no doubt at all that he and Connie are Charlie's proud parents.
The duty with which I am now charged is to decide, according to well laid down legal principles, what is in Charlie's best interests. Some people may ask why the court has any function in this process, why can the parents not just make the decision for themselves? The answer is that, although the parents have parental responsibility, overriding control is by law vested in the court exercising its independent and objective judgment in the child's best interests. The Great Ormond Street Hospital has made an application and it is my duty to rule on it, given that the parents and the hospital cannot agree on the best way forward.
The relevant legal principles which guide the exercise of my discretion are well settled. It is important that I stress that I am not applying a subjective test. I am not saying what I would do in a given situation, but I am applying the law.
In Wyatt v. Portsmouth NHS Trust, the Court of Appeal set out what is referred to as the "intellectual milestones" for Judges making a decision of the kind which faces me today. The Court of Appeal said as follows:
"In our judgment, the intellectual milestones for the judge in a case such as the present are, therefore, simple, although the ultimate decision will frequently be extremely difficult. The judge must decide what is in the child's best interests. In making that decision, the welfare of the child is paramount, and the judge must look at the question from the assumed point of view of the child. 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."
Charlie's parents have sadly, but bravely, acknowledged and accepted that the quality of life that Charlie has at present is not worth sustaining. He can only breathe through a ventilator and, although they believe that he has a sleep/wake cycle and can recognise them and react to them when they are close, they realise that he cannot go on as he is, lying in bed, unable to move, fed through a tube, breathing through a machine. In my full judgment, I shall set out the full details of his medical condition.
All of Charlie's treating doctors at Great Ormond Street Hospital are agreed that Charlie has reached the stage where artificial ventilation should be withdrawn, that he should be given palliative care only and that he should be allowed to die peacefully and with dignity. Charlie has been served by the most experienced and sophisticated team that our excellent hospitals can offer. His case has also been considered by an expert team in Barcelona, which has reached the same conclusion. Charlie's condition is exceptionally rare and I am confident that I have had reports from around the world from those who know it as well as anyone can.
It seemed at the outset of this hearing that there might have been a lone voice in the USA that was offering what had been described in some reports as "pioneering treatment". Understandably, Charlie's parents have grasped that possibility. They have done all that they could possibly have done. They have very publicly raised funds. What parents would not do the same? But I have to say, having heard the evidence, that this case has never been about affordability, but about whether there is anything to be done for Charlie.
At one stage, Great Ormond Street Hospital got as far as deciding to apply for ethical permission to attempt nucleoside therapy here — a treatment that has never been used on patients with this form of MDDS — but, by the time that decision had been made, Charlie's condition had greatly worsened and the view of all here was that his epileptic encephalopathy was such that his brain damage was severe and irreversible that treatment was potentially painful but incapable of achieving anything positive for him.
I was aware that I was to hear evidence from the doctor 1 in the USA who was, reportedly, offering what had been referred to as "pioneering treatment". Before he gave evidence, I encouraged the treating consultant at Great Ormond
Street Hospital to speak with him which he was able and willing to do. I am truly grateful to these experts for the time that they have given to this case. The outcome of that discussion is illuminating. The doctor in the USA said as follows:"Seeing the documents this morning has been very helpful. I can understand the opinions that he is so severely affected by encephalopathy that any attempt at therapy would be futile. I agree that it is very unlikely that he will improve with that therapy. It is unlikely."
However, the US doctor made it clear that, were Charlie in the United States, he would treat him if the parents so desired and could pay for it. As I have already said, funding in this case is not an issue. The US doctor also confirmed during this telephone conversation that he had never treated with nucleoside therapy anyone who had encephalopathy. Therefore, he was unable to indicate from any scientific basis whether a patient with encephalopathy would respond positively.
Charlie suffers from the RRM2B mutation of MDDS. No one in the world has ever treated this form of MDDS with nucleoside therapy, although patients with a different strain, TK2, have received nucleoside therapy with some recorded benefit. In mouse models, the benefit to TK2 patients was put at about 4% of life expectancy. There is no evidence that nucleoside therapy can cross the blood/brain barrier which it must do to treat RRM2B, although the US doctor expressed the hope that it might cross that barrier.
There is unanimity...
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