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A desire to care

07 July 2017

IT IS notable that a child who has occasioned so fierce a legal argument is so well loved. Neither the parents of Charlie Gard nor their courtroom “opponents”, the medical team at Great Ormond Street Hospital, wish him any harm. The dispute has been over the best treatment for a boy who, all agree, is dying, as a rare mitochondrial disease takes its toll on his weak body. His parents wish to fly him to the United States for a treatment that might alleviate his symptoms; the developers of the treatment says it has not been tried on anyone whose condition is so advanced; and Great Ormond Street say that, while it is possible to keep Charlie alive and sedated, his life should be allowed to come to its natural end.

Even outside commentators have shown remarkable restraint, if one overlooks the emotive contributions to Twitter. Donald Trump tweeted: “If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.” And a spokesman for Pope Francis spoke of his hope that “their desire to accompany and care for their own child to the end is not ignored.” The Church of England has been reticent of late on medical ethics. Were it looking for an example of what to say, the Pope’s comment would do well.

The case acts as a reminder that there is a shadow side to medical advances that allow doctors to keep people alive longer: the need to make a conscious decision about when to withdraw treatment. It is odd that switching off life-support systems is labelled “playing at God” whereas routinely saving lives in the operating theatre or through good nursing is not. A paper in the Journal of Medical Ethics in 2012 argued that, while “any solution should allow due deference to a family’s beliefs and shared involvement in decision-making,” the religion of the parents “should not influence the management of their child”. It is not clear, or very important, whether Charlie’s parents are motivated by religion or by the near-unbearable combination of hope and grief which attaches to such cases. What is clear is that all involved — parents, staff, and Charlie himself — deserve our prayers.


Small voice, indeed

WE MAY choose not to be quite so cutting about the Synod’s “still small voice” motion about the state of the nation as one of our correspondents (Letters), but it is pretty feeble. There is a synodical tradition of composing a bland motion to allow Synod members free rein, but many would wish to vote to say something more robust to a political class that is making such a hash of governing the country. If by “cohesion of the nation” the drafters meant fair and just treatment for the elderly and vulnerable affected by the Government’s austerity measures, increasingly the concern solely of exasperated clergy and hard-worked volunteer groups (see Comment: ‘From a transient to a permanent presence), they should say so. It is by no means clear that the restoration of calm at Westminster by some means or other is in the best interests of the whole nation.

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