10 August 2017

Charlie Gard

A reminder of the other issues.

By John Watson

The Charlie Gard case leaves different images with each of us.  Some will simply see the parents’ anguish, their hopes for a miracle cure being dashed by the medical evidence.  Others will see the team from Great Ormond Street hospital prepared to put their reputations on the line and accept abuse as the price for preventing unnecessary suffering.  Then there are those making the judicial decisions, from the specialist judge of the Family Division, no doubt losing sleep over his difficult decision, to the members of the appellate courts and the European Court of Human Rights testing his decision against principles of law.  The lawyers, too, acting for the various parties and any number of social workers, specialist witnesses etc.

It has certainly been a massive exercise and (as is always the case) many will have fed from it.  Those who claim rights to pictures or to exploit statements, journalists writing their column inches, newspapers increasing their circulations, advisers of many different sorts to many different parties.  For them the case had pecuniary value.  There are also those who have sought to use it to boost their reputations: the Catholic Church, the President of the United States, those who wish to use the case to further a cause, advance a personal profile or give them a status as protesters.  Their interests may not be pecuniary but they are interests nonetheless.  Many of these will have seen the case as an opportunity, either exploited or missed. But for us, the members of the public, there is quite a different dimension.  The case has brought us face-to-face with fundamental questions to which we do not really know the answer.

The litigation over whether Charlie should go to America ended with his parents accepting that, in view of deterioration in his condition, treatment there would not be able to give him a worthwhile life. It must have been an agonising decision, particularly after all they had been through, and they took it with the dignity we had learned to expect from them.  Most of us will never have to decide whether a child should be “switched off”, or at least let’s hope we won’t; but of course analogous decisions fall to be made at the other end of life and here the issues bother us all.

As life expectancy increases and dementia becomes an ever increasing cause of death, more and more people are left in a condition where they have nothing further to contribute, little understanding of what is going on and where, in the words of psalm 90, their strength to continue has become “labour and sorrow”.  Yet with medical help they remain alive, absorbing resources which could help others, deriving no value from the deferral of death.  What on earth is the point of it?

The sanctity of life is deeply written into our way of life, not just because of the prohibition of killing in the commandments.  Here religion and genetics pull together, the latter contributing a near universal fear of simply ceasing to exist.  This approach is taken a long way.  For example, it is still an offence in the UK to assist a suicide even where the most appalling illnesses are in question, and although this ban is currently being challenged in the courts on the basis of Human Rights legislation, until now the judges have always said that the matter is one of Parliament.  Governments are of course reluctant to risk public displeasure by meddling in such a highly sensitive area, and prefer to use the fact that in practice charges are seldom brought as an excuse for doing nothing.

There, however, we are talking about suicide which means helping to end a life which would otherwise continue.  Much more difficult is the question of when people should be allowed to die.  That is partly a question of resources.  The current approach of fighting for life evolved at a time when resources were less stretched than they are currently.  People died younger and far fewer continued into old age.  That meant that the burden of looking after the elderly was far lighter than it is now, where it uses up an increasing proportion of health service capacity each year.

Now, though, it is different because the cost of preserving the lives of large numbers of elderly people is becoming a steadily heavier weight on later generations, a cloud darkening their place in the sun.  It is possible that the pressure will eventually be alleviated by robotics which will make the care of the elderly much easier but we are not there yet and there is already a need to ask ourselves when we should seek to preserve life as opposed to giving palliative care.  What should the test be?  Should it depend upon whether life is still giving some sort of enjoyment?  That would be difficult to apply as it depends on the state of mind of a patient whose response is bound to be difficult to gauge.  Should it be whether the patient is still capable of making any sort of contribution?  As machines take over more and more human jobs, the whole idea of a contribution begins to fade.

Questions like these are difficult for us to address because everyone will see them in the light of their own differing experience and prospects, and they play heavily upon natural insecurities and doubts. Really we would rather not face them, and when a case like that of Charlie Gard brings them to our attention we try to avoid them and put our heads back under the covers.

The test adopted by the court in the Charlie Gard case of putting the welfare of the child first was no doubt in accordance with the law, but it gives no guidance as to how scarce resources should be allocated.  That is a far more difficult issue, and the knowledge that sooner or later we will have to confront it and that we don’t know how to do so is one of the factors which makes the case so uncomfortable for us all.


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