In the matter of Charlie Gard – Permission to appeal hearing [here]. [Other posts on our blog about this case can be found here]

This is a case with intense poignancy. Charlie Gard is so seriously ill that it appears undisputed that he will never lead a full life as most of us would recognise it. His parents want an opportunity to try experimental treatment, and have raised the funds to do so. The hospital consider it is not in his best interests, and seek authority to end his life support. The Court of appeal agreed with the hospital. The Supreme Court refused permission to take the case further. The European Court of Human Rights will consider the case tomorrow.

Well, the title is clear enough. Perhaps I should deal with a quibble first. I recall legal discussions about whether the Supreme Court was wrong in the Miller (Brexit) litigation, being met with the retort that as a matter of law if the Supreme Court says it, it isn’t wrong. But the decision here is a decision refusing permission, not a decision after full hearing. My particular frustration is that the Supreme Court was wrong not to have allowed a full airing of the issues, which on their face were seriously and properly arguable and of real importance.

As is clearly explained in this blog on the UK Human Rights Blog, by the time the case was argued before the Supreme Court, a real issue was one around jurisdiction. Essentially, if parents agree on a course of action, and that course of action does not reach the significant harm threshold for the State to interfere with their rights, then why is the issue even justiciable (why do the courts have the right to interfere at all?) That is an important question. To put flesh on those bones, it’s worth noting (as indeed Lady Hale does note in the very short judgment) that many of these cases are about whether the State has a duty to keep someone alive at the State’s expense. But this is not such a case: it is about whether the State has the right to bring about death, where a privately funded offer to keep Charlie alive is on the table.

There are three strands to the reasoning that I want to tease apart. In each case, my frustration is that it looks as though, at the very least, there was so much more that could and should have been argued, that it is untenable for the Supreme Court to rule that the issue wasn’t even arguable.

  1. Significant Harm or Best Interests?

The first strand concerns whether the threshold test that the Court has to consider is one relating to the best interests of the child, or to significant harm to the child. The parents argued the latter; the courts accepted the arguments advanced on behalf of the hospital that they had to consider the former. But why? Lady Hale observed as follows:

…applications such as this are provided for by statute: the Children Act of 1989. There was an application for a specific issue order in this case, as well as under the inherent jurisdiction of the High Court. Both are governed by the same principles. Section 1, sub-section 1 of the Children Act 1989 provides that the welfare of the child shall be the paramount consideration in any question concerning the upbringing of the child in any proceedings. This provision reflects but is stronger than Article 3.1 of the United Nations Convention on the Rights of the Child, which says that in any official action concerning the child, the child’s best interests shall be a primary consideration.

In other words, since there are proceedings in front of the Court, to which the paramountcy principle in section 1 of the Children Act applies apply, the Court is bound to apply section 1, and consider the interests of the child as paramount.

Two points may be made in rejoinder:

Firstly, it is Lady Hale herself who has frequently taken time to point out that under the structure of the Children Act, significant harm is indeed the threshold which justifies compulsory State intervention in family life. If we are departing from that pretty fundamental point, we really want more of an explanation than we get in this refusal of permission.

Public authorities cannot improve on nature… That is not, however, to say that the State has no role, as the 1989 Act fully demonstrates. Nevertheless, the 1989 Act, wide ranging though the court’s and social services’ powers may be, is to be operated in the context of the policy I have sought to describe. Its essence, in Part III of the 1989 Act, is the concept of working in partnership with families who have children in need. Only exceptionally should the state intervene with compulsive powers and then only when a court is satisfied that the significant harm criteria… is made out. B (a Child), Re [2013] UKSC 33 (12 June 2013)

Secondly, however what of the argument that it is the existence of properly brought proceedings that has shifted the threshold? Lady Hale refers both to a specific issue order, and to the inherent jurisdiction of the High Court. Dealing with the latter first, section 100 of the Children Act, which specifically preserves the inherent jurisdiction of the High Court in cases where no Children Act order would suffice, also specifically preserves the significant harm threshold:

100 (4) The court may only grant leave [for any exercise of the court’s inherent jurisdiction with respect to children] if it is satisfied that—

(a) … [no Children Act Order available]; and

(b) there is reasonable cause to believe that if the court’s inherent jurisdiction is not exercised with respect to the child he is likely to suffer significant harm.

Of course, section 100 limits local authorities’ powers to protect children; but wouldn’t it be surprising if the common law was not similarly constrained to limit another public body’s power to withhold life-sustaining treatment? So on my reading of section 100, the mere invocation of the inherent jurisdiction is insufficient to displace the significant harm threshold in favour of the paramountcy principle.

What is more of a concern however, is to try to imagine where this kind of legal reasoning could end. If all it takes to displace the significant harm threshold, and to substitute it with the paramountcy principle, is a third party application or an invocation of common law, then it is hard to see where it would not be possible to displace parental rights and the significant harm threshold.

It feels to me, therefore, that the much better position is that a “mere” third party application or the “mere” invocation of common law is not sufficient basis for holding that the child’s best interests have become the relevant threshold. To put it another way, the jurisdictional argument was a good one, that should have been aired at a full hearing.

  1. The Rights of the Child?

Lady Hale observed this:

…the European Court of Human Rights has firmly stated that in any judicial decision where the rights under Article 8 of the parents and the child are at stake, the child’s rights must be the paramount consideration. If there is any conflict between them the child’s interests must prevail.

Once again, I observe that a few short lines are a sparse basis for invoking of such a significant legal principle. Of course, it is frequently asserted that where parental rights and children’s rights are in conflict, that of the child must prevail. But as I have observed elsewhere:

…the atomisation of the interests of the child and the interests of the parents, setting the human rights of one in conflict with the human rights of the other is a peculiarly Western approach. Note in particular that whereas human rights may be conceived as privileging the rights of humans over the rights of States, this atomisation approach puts the State straight back in the picture as the arbiter of the dispute between the conflicted interests of parent and child.

And these observations can draw some legal comfort from the idea that the Article 8 right is essentially a right of the individual asserted to prevent unnecessary or disproportionate interference by the State.

Once again, we are faced with the “where would it end” dilemma. If all it takes is the invocation of a conflict of interests to warrant the State taking over from the family as the arbiter of the competing interests, then it is hard to see when the State couldn’t intervene.

So let’s look closer at the assertions that “the child’s rights must be the paramount consideration”. What rights exactly? The question of whether the Article 2 Right to Life embraces as its corollary a “right to die” has been considered on many occasions. The robust conclusion of the European of Human Rights has been endorsed and followed in this country before. The European Court said this:

Article 2 cannot, without a distortion of language, be interpreted as conferring the diametrically opposite right, namely a right to die…The Court accordingly finds that no right to die, whether at the hands of a third person or with the assistance of a public authority, can be derived from Article 2 of the Convention. Pretty v United Kingdom – 2346/02 [2002] ECHR 427 (29 April 2002)

Now, I would acknowledge that a recent European ruling has shifted towards a right-to-die, see Withdrawal of nutrition and hydration would not offend right to life – Strasbourg Court. But I have to say the case was controversial, not least because Mr Lambert himself had not actually sought a right to die.

Moreover, I am not aware that the Courts of this country have embraced that the right to life encompasses a right to die. Indeed, in a case which I have myself criticised (see Corollaries of the Right to Life: A Duty to Live or a Right to Die?), for the way in which it did not allow a right to die, the judge very memorably said this:

I accept that a resumption of treatment deprives E of an imminent and relatively peaceful death.

These are all weighty factors.

Against them, I place E’s life in the other scale. We only live once – we are born once and we die once – and the difference between life and death is the biggest difference we know. E is a special person, whose life is of value. Re E (Medical treatment: Anorexia) (Rev 1) [2012] EWCOP 1639 (15 June 2012)

My criticism was, that this presumption in favour of life was incompatible with section 1 of the Mental Capacity Act, and its presumption in favour of the capacity to decide even issues of life and death concerning oneself. But I would be the first to argue that the same issue does not apply here. A 9 month old baby does not have the capacity to make an unwise decision to die. Surely for a 9 month old baby, the presumption in favour of life has not been displaced – at least where, as here, the State is not being asked to artificially preserve life at the State’s expense.

One might question the purpose of an intensive focus on the right to die, in a case which is so plainly about the right to live. But that is my point. I wonder at the assertion that “the child’s rights must be the paramount consideration”. I find myself saying “quite so: and supremely among those rights is the child’s presumptive right to life.”

  1. Is the Child Suffering Significant Harm?

Sandwiched between the two strands of argument I have teased apart above is an assertion that Charlie might, in fact, be suffering or likely to suffer significant harm “if his present suffering is prolonged without any realistic prospect of improvement”. And once again, I am frustrated that this argument is accepted without full argument or full reasons from the Supreme Court.

Of course, they do refer to the Court of Appeal judgment, so what does it say? I have to say, what seems starkly clear to me is that there is in fact no clear finding that Charlie is suffering or likely to suffer significant harm. Instead:

Firstly, it is acknowledged that his actual experience of pain is unknown. Set against this, his parents observe that he has a discernible reaction to some interventions likely to cause pain such as a heel-prick – from which I presume we are invited to infer that he is capable of demonstrating pain, and therefore might be presumed to demonstrate pain if he were in fact experiencing it to any significant degree. But then it is asserted by the treating team that he is likely to experience pain, and that it is likely to be “significant” –note the use of the same word as appears in the Children Act “significant harm” threshold. But, of course, significant pain and significant harm are not the same legal concept.

Moreover, as a general point of legal principle, the mere crossing of a threshold does not in itself make intervention necessary. Normally, having once established – if it were established – that Charlie experiences significant pain, and that this crosses the threshold of significant harm, the next step would properly be to ask whether it was both necessary and proportionate to turn off his life-support as a response to that harm. Once again, the absence of any reasoning on such an important point of legal principle is troubling.

Secondly, there is much discussion of guidance which suggests that one basis for withholding treatment is the futility of existence if treatment is continued. The Court of Appeal noted that this argument did not engage with significant harm or pain, but concluded that the authorities seemed to accept that the futility of life justified the withdrawal of treatment. Really? And was it really not for our country’s highest Court to evaluate whether that guidance properly dealt with proportionality and necessity, in circumstances such as these where an alternative was on offer?

While I understand the arguments about the futility of life, I would also observe that there are many others in many other circumstances who consider life to be futile, and we would generally have a marked reluctance to accept such an evaluation at face value.

In one of my blogs refer to earlier, I opened with this memorable couplet:

“Thou shalt not kill, but need not strive

Officiously to keep alive”

– from The Latest Decalogue, by Arthur Hugh Clough

I went on to argue that the Court in that case had done exactly that, in respect of a person’s conscious and apparently capacitous decision to allow their own death. I reflect on the same couplet here to reason to the diametrically opposite conclusion: here, the courts seem to be officiously striving to bring about a death.

That is a tragedy for the individual family. What makes it worse is that the reasoning could bring whole swathes of intimate, painful and finely-balanced judgments in private family life and decision making before the Courts.


Allan Norman (@CelticKnotTweet) is an independent social worker at Celtic Knot. Between 2006-13 Celtic Knot was also his law firm.