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Charlie Gard’s Ruling: The BREXIT angle

The similarities in both cases are that, one, they both involve terminal conditions with poor prognosis but with families that loved them dearly and won’t let go and two, the court clearly decide it is in the place of domestic authorities to take over responsibilities of those decisions particularly in deciding patient’s wishes or what’s in patient’s best

An edit has been made to this article since its publication clarifying that signatory to the European Court of Human right is not an expressed condition for European Union membership, but the overall conclusion of the article remained the same.

The Charlie Gard case came to a dramatic end yesterday following the final verdict of the European Court of Human Right.

The judgement accepted in full the verdict of the three British courts (The high court, the Appeal and Supreme Court) that have previously heard the case.

For benefit of objectivity and for folks that do not know about this case or have not followed it as much, here is a brief description of Charlie Gard’s condition in the words of Great Ormond Street Hospital (GOSH), the hospital treating him in a quote:

“Charlie Gard suffers from an exceptionally rare inherited mitochondrial disease called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, referred to generally as “MDDS”.

Charlie suffers specifically from the RRM2B mutation of MDDS

 Charlie’s brain, muscle and ability to breathe are all severely affected. In addition, Charlie has congenital deafness and a severe epilepsy disorder. Charlie’s heart, liver and kidneys are also affected.

 Charlie has severe progressive muscle weakness and cannot move his arms or legs or breathe unaided. 

 Charlie’s eyelids cannot stay open and his eyes point in different directions because of muscular weakness. Charlie’s retina would struggle to develop and his brainwaves suggest that he is not going to be able to lay down normal visual patterns that should be learned at an early age.

Eyesight is not something you’re born with; it develops over time.

There is no cure for Charlie’s condition which is terminal. GOSH explored various treatment options, including nucleoside therapy, the experimental treatment that one hospital in the US has agreed to offer now that the parents have the funds to cover the cost of such treatment. GOSH concluded that the experimental treatment, which is not designed to be curative, would not improve Charlie’s quality of life”

 (GOSH PRESS RELEASE)

GOSH concluded that best line of action is to withdraw life support and administer palliative care, allowing Charlie to die with dignity because his brain was shown to be extensively damaged at a cellular level.

Charlie’s parent like most parent would, disagreed with GOSH assessments, conclusion and treatment decision going forward.

 

At the very heart of the parent’s battle is hope and the promise of an experimental treatment which GOSH believe will be futile because it is not curative and would not improve his quality of life and astonishingly, GOSH claimed the American doctor who promised the experimental treatment agreed with the medical opinion of the UK medical team treating Charlie.

Their hope may have been boosted by the improvement experienced by Arturito, an American boy who suffers from a similar strain of Charlie’s condition and received the experimental treatment.

All hopes and everything came to a dramatic and emotional end though for the parents and everyone involved when the ECHR delivered the following judgement:

European Court of Human Rights has by a majority endorsed in substance the approach by the domestic courts and thus declared the application inadmissible. The decision is final.

Charlie Gard ECHR Ruling

A week ago, the ECHR granted an interim order mandating GOSH to continue life support treatment to allow it to consider the case. This new ruling also effectively lift that interim order, which means the hospital is now legally free to switch off Charlie’s life support, am not so sure of ethical and moral conscience though.

 

That is the summary of Charlie Gard’s story so far, but the reason am left scratching my head though is that, considering Britain is currently locked in BREXIT negotiation with the EU, and at the heart of the EU is the ECHR, an institution that has been accused in the past of interfering with the British judicial system and in some cases overruling British court judgments, could the BREXIT atmosphere have played into the thinking of the EU judges? Could the judges be thinking, now is not the time to overrule any judgement?

My thinking is so remote to be a reason, but the following line in their judgement said something:

it was not for the Court to substitute itself for the competent domestic authorities. From this perspective, the Court gave weight to the fact that a domestic legal framework – compatible with the Convention – was available governing both access to experimental medication as well as withdrawal of life sustaining treatment.

 

The question that comes to mind is, in those cases where the EU judges have overruled domestic (British) judges, does that mean the judges do not have competent authorities or there was no compatible convention in Britain?

RIGHT TO LIFE AND PRECEDENT:

In the proceedings before the European Court, Charlie’s parents argued – on their own behalf and that of their son – under Article 2 (right to life) that the hospital has blocked access to life sustaining treatment (in the U.S.A.) for Charlie

The excerpt above from the court ruling implies that Charlie’s parent primarily relies on Article 2 (right to life) among other rights, but there is a precedent for the type of ruling delivered by the ECHR yesterday, notably in the case of Lambert and Others vs France where the applicants complained against the judgment of the Conseil d’État authorising the withdrawal of the artificial nutrition and hydration of their son and brother.

Lambert and Others vs France

In the Lambert case, the court admitted that in the absence of consensus among European member state on how to deal with cases of withdrawal of life-sustaining treatment, the ECHR afford State’s margin of appreciation.

In complex medical, legal and ethical matters like Lambert and Charlie’s, it is primarily for the domestic authorities to verify whether the decision to withdraw treatment had been compatible with the domestic legislation and the Convention, and to establish the patient’s wishes in accordance with national law.

The key differences though are that Lambert was an adult but in a vegetative state, thus someone has to be responsible for him, while Charlie is a baby who requires someone to take a decision on what’s in his best interest.

The similarities in both cases are that, one, they both involve terminal conditions with poor prognosis but with families that loved them dearly and won’t let go and two, the court clearly decide it is in the place of domestic authorities to take over responsibilities of those decisions particularly in deciding patient’s wishes or what’s in patient’s best interest.

Based on the precedent of judgement by ECHR upholding judgement by relying on medical opinion arrived at after detailed clinical and extensive examination by the treating hospital, I don’t think the BREXIT atmosphere contributed to the judgement by the ECHR, the judges would have reached the same conclusion regardless.

Some believe that withdrawing from the European Convention on Human Rights would mean leaving the Council of Europe. However, the EU Treaties do not deal with any linkage between EU membership and ratification of the European Convention: whether, for example, adherence to the European Convention is a formal requirement of continued EU membership or a benchmark for a human rights standard that a Member State should achieve and sustain. ECHR

SHOULD TREATMENT BE ALLOWED TO BOOST RESEARCH?

The point whether if allowing Charlie to undergo an experimental treatment even if it was not successful could be a step forward in research towards finding treatment for the condition was also rejected by the hospital with the view that Charlie’s best interest supersedes the interest of medical science and research.

In my final analysis, though, the parents fought valiantly and can hold their head high even though this is not in any way a consolation and the outcome clearly is not what they want. The determination and sincerity of purpose demonstrated by the parents clearly showed their dignified personalities.

charlie and dad

Charlie and dad

I will leave you with words of Charlie’s father prior to the ECHR ruling “if there are wires coming out of everywhere and we can see he is in pain, then we will accept he is suffering, but when I look at him, he is just calm and I ask, how can I give up on you?” this to me is an evidence of a thoughtful father who clearly has the best interest of his child and willing to give everything to give him a chance.

 

 

 

 

 

 

 

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  1. Hope for Charlie Gard after a dramatic roller coaster week. Analysis: – The Analysts

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