Once again, a tragic and very intimate story raises a major issue, one that should concern us all. That does concern us all. Once more, it is related to the issue of major importance for each of us: Should we insist on finding therapeutic solutions for patients with life-threatening illnesses when doctors say there is no hope?
Here, it concerns a child. In the United Kingdom. And in this country, for more than a month, despite the Brexit and the chaos that followed Theresa May’s overall majority loss in U.K. Parliament, public opinion has been actively mobilized around the case of ten-month-old Charlie Gard, suffering from a rare genetic condition, causing progressive muscle weakness and brain damage. Charlie, since birth, cannot hear, see, cry or swallow. And he is kept alive by ventilator because his lungs cannot go up and down.
Faced with doctors’ powerlessness at London’s Great Ormond Street Hospital, where they are treating him, and who say that life support treatment should end for what they now consider to be excessive therapy, Charlie’s parents want to travel to the United States for experimental medical treatment. After a media campaign of several months, they raised the needed £1.3 million, owing to the support of more than 83,000 donors.
For specialists at Great Ormond Street Hospital, the therapy in the United States will be futile. Experts in Spain, consulted for a second opinion, reached the same conclusion: therapy in the US is unlikely to be effective and should not be attempted.
Given this refusal, the parents did not give up and then appealed to London’s Supreme Court, which ruled in favour of the London doctors, considering that the child’s interests should be the main concern, ahead of parent’s interests and that the therapy proposed in the US will not work. As the parents then expressed their intention to take their appeal to the European Court of Human Rights in Strasbourg, the London’s Supreme Court ordered London’s Great Ormond Street Hospital to continue treating the child pending the outcome of the appeal.
The European Court of Human Rights (ECHR) had scarcely been seized that it ordered life support extension for Charlie until midnight on Tuesday, 13 June, so ECHR could examine the case and then decide whether it would go to a full hearing. Here we are today, at the time of writing.
At a time when the United Kingdom is calling into question its subjection to European law, a major issue for a British citizen is thus being submitted to a European court: Do parents have the right to finance alternative treatment abroad for their child, while doctors in their country want to halt treatment, which they consider hopeless? More generally: Do parents have the best interests of their child at heart or their own when being so intent to give the child medical attention while doctors say there is no hope? Are they really trying to give their child every chance of pulling through, or only not to feel guilty, without regard for the patient’s suffering? Can such power of decision be vested in judges? Or should it be left in the hands of the parents?
Personally, I do not see how it would be morally and humanly possible to deprive parents of such a right to do everything possible to return their child to health, particularly if the child is not in a position to decide for himself. And I hope that the European Court will allow the parents to travel with their child to the United Sates.
Of course, another problem will arise one day, a broader one: Since we will not be able to finance through donations all similar cases, it will be necessary to decide whether the national community can, or must, finance the best possible treatment in the world, for any patient in that community, or at least for any child, that such treatment can save, or that at least can afford a chance of remission.
At a time when medicine, like the rest, is becoming globalized and where everyone will seek, demand, the best treatment available globally, this issue can no longer be overlooked.
The Charlie Gard case should urge us to do more serious thinking about this issue before it occurs.