Charlie Gard & the Socialised Medicine Myth

Conor Fegan
Jul 28, 2017 · 8 min read

The case of Charlie Gard has raised many legitimate questions about who-decides-what when it comes to difficult, end of life decisions. But despite the assertions of many American commentators, it is not a case which should be analysed through the prism of the on-going socialised medicine debate. The case provides no insights into that debate; and attempts to draw such insights fall into the sorry trap of misrepresenting the facts of this utterly tragic case, for cheap political gain.

Francis J — the High Court Judge presiding over Charlie Gard’s tragic case — took the unusual step in court on Wednesday afternoon of responding to one aspect of adverse public opinion surrounding the case: the idea that the case was a consequence of so-called ‘socialised medicine.’ That idea has gained traction amongst conservatives in the United States in recent weeks, receiving implicit endorsement from Republican Senator Ted Cruz who asked ‘[…]WHY govt should have power to decide who lives & dies’ [sic]. But as Mr Justice Francis made clear, it is an idea which has no basis in fact or law — the fact that the United Kingdom has a National Health Service has no bearing on the issues in the Charlie Gard case. Such is the importance of this conclusion — and the consequences which flow from it — that this piece is devoted to making it good.


Why has Charlie Gard’s case come before the High Court?

Many people have asked why the High Court — or indeed any court — has the authority to prevent Charlie’s parents from following the course of action which they believe to be in his best interests. That is a legitimate question to ask — most of us assume that those with parental responsibility have the right to make those decisions which are in the best interests of their children and that these decisions will be respected. And we would be correct in thinking that this is true — the position in English Law where a child lacks capacity, is that an individual with parental responsibility may consent to, or refuse to consent to, medical treatment on behalf of a child for which they have parental responsibility, but only when their decision is in the best interests of that child. This last point is important.

Those with parental responsibility do not have an absolute right to consent to, or refuse to consent to, medical treatment for those children which they have parental responsibility for — the ability of an individual with parental responsibility to consent to, or refuse to consent to, medical treatment on behalf of a child, does not extend to the making of decisions which are not in the best interests of that child. The decision making authority of parents is, therefore, confined by the best interests of the child.

In most cases this will cause no problems — parents and medical professionals are normally in agreement that a certain course of action is or is not in the best interests of a child; and the course of action which is in the best interests will be followed. But rare cases arise where there is a genuine dispute over best interests — medical professionals might disagree with the course of action proposed by the parents; or parents might disagree with the course of action being proposed by medical professionals. In these rare cases there needs to be a mechanism for deciding what is — at law — in the best interests of the child, so that the legality of treatment can be determined.

That mechanism is, in essence, a declaration made by an independent judge, who hears all of the evidence and rules upon the best interests of the child. This is precisely what has happened in the Charlie Gard case.

The original dispute can be briefly stated — Charlie suffers from a rare inherited mitochondrial disease — infantile onset encephalomyopathic mitochondrial DNA depletion syndrome — with the following serious symptoms: progressive respiratory failure; myopathy; encephalopathy; and sensorineural hearing loss. Great Ormond Street Hospital (‘GOSH’) believed that it was in Charlie’s best interests to: (i) remove artificial ventilation; (ii) provide palliative care only; and (iii) not to be subjected to nucleoside therapy in the US. In short, they believed it was in Charlie’s best interests to die a peaceful death. But his parents disagreed — they believed that it was in Charlie’s best interests to receive nucleoside therapy in the chance that it would improve his health, even if it did not provide a complete cure.

This was the basis upon which the matter first came before Francis J in April — a genuine disagreement between GOSH and Charlie’s parents over his best interests had arisen. GOSH applied to the court for a declaration as to Charlie’s best interests and Francis J was charged with the difficult task of weighing up the evidence and ruling upon the matter. He declared that it was not in Charlie’s best interests to receive the therapy and that he should die a peaceful death in accordance with the plan laid down by GOSH — that conclusion was upheld by the Court of Appeal, the Supreme Court and the European Court of Human Rights.

Nothing in this narrative turns upon the fact that the United Kingdom has a so-called ‘socialised’ system of medicine. The reason that Charlie’s case came before the High Court is because of a genuine disagreement about the best interests of Charlie; and, following on from this, the legality of treating him. The benefits or otherwise of socialised medicine did not feature in Francis J’s judgment, or any of the appellate judgments in this case. The ‘paramount consideration’ was always Charlie’s welfare. And it is important to note that, if Charlie was being treated in a private hospital in the United Kingdom as opposed to the NHS-funded GOSH, the position would have been the exact same — medical professionals in the private sector must also refer disputes over best interests to the courts, or they too risk being prosecuted for battery and / or assault.

The punchline is that the underlying legal issue remains irrespective of whether the treatment is publically or privately funded.


But why does the state decide?

The simple answer to this question is that the state has not decided anything in this case — an independent judge has made a declaration as to what is in Charlie’s best interests; and in order to adhere to the requirements of the civil and criminal law, GOSH must recognise this ruling and act accordingly. The straightforward legal position is that no medical professional in the United Kingdom has a legal justification for continuing to treat Charlie in a manner inconsistent with the declaration made by Francis J.

It is worth emphasising that the declaration was made by an independent High Court judge after careful consideration of the relevant evidence and legal issues; it was upheld by three further independent courts. The Government did not decide; the NHS did not decide; the State did not decide — the independent judiciary decided, on the basis of clear legal principles that have been developed both judicially and legislatively over several decades. Any suggestion that the state sanctioned or encouraged the death of Charlie Gard should be vigorously denied — such suggestions misrepresent the tireless efforts of the judiciary and GOSH to do their very best for Charlie; and such suggestions — it must be said — are no more than reprehensible attempts to spin the tragic facts of this case in order to justify arguments against socialised medicine.

Anyone who reads the judgments and position statements associated with this case will be able to see through these reprehensible suggestions — a point which Melanie Phillips makes very well.


Nevertheless, should the parents not have the final say?

This question is perhaps the most difficult of all and is prone to differing views — on the one hand there are those who (sincerely) believe that parents should have the final say in tragic cases like this; that they know their children the best; and should be trusted to act in the best interests of their children in all that they do. Indeed, the tireless efforts of Charlie Gard’s parents throughout this tragic ordeal lend a significant amount of support to this argument — no one could accuse them of having left any stone unturned in their desire to ensure that Charlie’s interests were respected.

But GOSH present an equally compelling argument which is worth quoting in full:

‘…a world where only parents speak and decide for children and where children have no separate identity or rights and no court to hear and protect them is far from the world in which GOSH treats its child patients[…]GOSH believes in its core that every patient is his or her own, unique and special person and that it owes a duty of care to each…’

GOSH Position Statement (13th July 2017)

From the outset it is important to note that no one suggests that Charlie’s parents denied Charlie’s separate identity or rights —they always spoke up for what they viewed as being in Charlie’s best interests. Instead, GOSH argued that the parent’s voices should be but one, in a much wider conversation about Charlie’s rights and interests — his right to life; his right to dignity; his right to medical treatment; his right of autonomy; his right to be free from suffering.

Different voices bring fresh perspectives to each of these rights and interests; and it is when all of these voices come together — in joint conversation — that the best collective outcome is reached. Of course, the voices of parents will always be illuminating when discussing the best interests of children — but theirs should never be the sole voices.

This is a very complex way of saying, two heads are better than one.

That is why this case was never about the court or the medical staff overruling the decision of the parents, even if it was sometimes framed that way; it was, instead, about everyone coming together in a collective effort to represent Charlie’s rights and interests, in the best way possible. That is modern and responsible ethical ideal, which puts the patient at the core of medical decisions, even when they cannot speak for themselves.

Of course, Charlie’s voice would never have been heard in the way it was had it not been for his parents — that much can never be taken away from them. But it was through their collaborative efforts with everyone involved in this tragic case that Charlie’s voice was given the full amplification it deserved.


Concluding Remarks

There is no escaping the fact that end of life decisions encompass some of the most complex legal and ethical issues in modern society; Charlie Gard’s case is no exception. Indeed, it is a case which has — uniquely—brought the complexity of such issues into not only the homes of those in the United Kingdom, but also into the homes of those across the world. Widespread discussion of this case —provided that it is respectful and informed — is to be welcomed, even when it leads to vehement disagreement; indeed, it is only through such disagreement that we can hope to address many of the complexities which this case has raised.

But there is a difference between respectful engagement with the tragic complexities of this case, and irresponsible commentary that seeks to serve political ends. Unfortunately, recent commentary linking the facts of this case to socialised medicine fall into the latter category —they treat this case as a political football, to be kicked about on the harsh field of the socialised medicine debate. But they do so in ignorance of the fact that this is ultimately a case which is —above all— far too tragic, far too human for political point-scoring.

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