Who breaks a butterfly upon a wheel ?

Who breaks a butterfly upon a wheel ?

It now appears that Charlie Gard and his parents have lost their war. It seems that Charlie will die over the next few days and that his parents have decided that all hope of any improvement is lost. All they now seek is to ensure that their son dies with dignity and compassion.

They gave up their commendable battle when they realised it was now, after all the delays, too late to meaningfully help their son. They faced enormous challenges and met them with dignity and were, without any dubiety, an example to many of the power of parental love. The showed a steadfastness that was remarkable and kept on despite many difficulties.

In the last week there was a campaign mounted against them which is likely to have originated  from GOSH’s legal team. Articles appeared in the British press praising at the medical and nursing staff suggesting that they were doing their best for the child and his parents could not wish for better advocates for their baby.

It was then suggested that the staff had been intimidated by online harassment and threats. This is a common strategy by those under pressure as it has the two fold action of both stifling criticism and also suggesting that those on the other side of the debate are associated with violent thuggery. This was especially unpleasant as throughout this dreadful time Charlie’s parents remained dignified and reserved. They never called the motives of the staff caring for their child into question and said no bad things about them.

Charlie Gard will not see his first birthday. But in his short life he will hopefully have opened many peoples’ eyes to the dangers of giving away our freedoms to authorities who tell us that they will look after us. He and his parents will have achieved much more than most of us, they are modern heroes. Heroes don’t need to win their battles they just have to be heroic. Heroes are heroic not because they win but because they fought.

In Loco Parentis – the terrifying tale of Charlie Gard

In Loco Parentis – the terrifying tale of Charlie Gard

As a doctor I have found the unfolding tragedy befalling Charlie Gard and his family extremely upsetting to follow.  This poor boy and his family are butterflies being crushed on a wheel to press home a legal point, they are unfortunates being punished having committed no crime.

Let us firstly be clear what this case is not about. Despite protestations to the contrary this case is not about the best interests of Charlie Gard. The best interests of the child (1)  are clearly important and made paramount both in the UN Convention of the Rights of the Child (2) and in British Law with the Children Act of 1989 (3) . It is clear that all the parties involved in this debate are acting because they have the best interests of Charlie at heart. The doctors and hospital feel that they, by virtue of their knowledge, know what is best to do. His parents, through love and affection, also believe that they can see the best plan and hope for their son. Both are acting in the best interests of Charlie, this is not the problem. The problem is who decides what exactly are Charlie’s  best interests.

It has always been the case that the parents of the child decide what is in the best interest of the child. This is as it should be as it reflects the natural law and ensures that the people most attached to the child’s interest are those who act as the child’s guardian. There are very few circumstances when this can be changed and they depend upon proving that the parent is being either negligent or malevolent. Neither of these factors are in play here and, if anything, the parents have taken extraordinary steps to secure chances for their child, well over and above what many parents would have been able to do.

It is interesting that, at the 24th hour, Great Ormond Street Hospital has made an application to court to revise its plans (4) possibly starting to realise that the parents’ opinion may have been closer to Charlie’s best interests, than had their own opinion been. So in this difficult calculus of what is the best plan of action it appears that Charlie’s parents may have been the better judge all along.

While these arguments over the ‘best interests’ may mean that the parent disagrees with the medical team it does not mean that the parent can compel a doctor to do something they feel is inappropriate or wrong. But again this is not the case in this situation. Charlie’s parents have never asked GOSH or the NHS to undertake treatments they do no agree with. They have gathered together sufficient resources to enable Charlie to receive this treatment by doctors who believe it is, worth a trial, in the child’s interests. This should have been the end of the dispute. Charlie and his parents should have used their money to go and try this last ditch attempt, to catch this glimmer of hope.

GOSH and its staff, however, stopped this. Their court battle stopped the treatment and refused the parents the ability to move their child. In their paternalism they not only refused to help but also stopped anyone else helping. The thousands of people who collected money to help Charlie were thwarted by this as well as Charlie’s parents and the other hospitals and doctors who wanted to help.

I am a very old-fashioned doctor and I don’t fear paternalism per se. A desire to act like a father, is a a desire to be benevolent, guiding, helpful and wise. In itself not a bad thing. It becomes bad when it belittles another party and reduces their agency. When doctors worked in a professional relationship with their patients, the doctor’s paternalism would drive them to seek the best for their patient and was usually leavened by respect for the patient’s autonomy. This combination could be valuable when there were difficult scenarios – when the future was unpredictable and  the efficacy of plans of action difficult to assess. Much of the placebo effect of medical intervention depends on this aspect of the relationship and large parts of the benefit of of healthcare comes from this caring, guiding, advisory aspect of medical care.

There was always one very good safeguard against this paternalism becoming intrusive or  belittling, when the relationship was between doctor and patient, the patient could always terminate the relationship. If they felt that the doctor’s approach was wrong they had no need to continue to use them. This was a way to safeguard the patient and also a way in which the doctor would know that they had overstepped the boundaries and they could learn where paternalism started to erode patient autonomy. But in the NHS this is difficult. The patient can’t change their doctor without a great deal of difficulty. If they change they will probably be labelled a “difficult patient” which might mar relations with their next medical practitioner.

In addition, under the NHS the patient is no longer the employer of the doctor in the UK. The most important relationship for the doctor is the one with his employer – the state, the NHS – not the the patient directly. It is the state who pays his wages, sets his targets and assesses his performance and we know “he who pays the piper calls the tune“. In this scenario paternalism is largely unchecked and can be very dangerous. Paternalism, appearing kindly and wise, can mask actions that are not in an individual patient’s best interest. Rationing and refusal of therapy is hidden as medical advice and choices are withdrawn from the patient. Doctors often find, when working in the NHS, that their attempts to maintain professional standards and a focus on their relationship with the patient can cause them difficulties. They are made to feel as if they are being disruptive when they call for what is appropriate for the patient. They can be told they are jeopardising the budgets, failing to be a team player by not following the organisation’s line, and generally made to feel awkward if they behave in a manner that was formed by their vocation and training.

In this case paternalism seems to be being employed to sweeten a bitter pill. The state wants to end Charlie Gard’s life before all options that are available have been tried. Despite having seen parents act heroically and selflessly for their child, without an ounce of malice, they would prefer Charlie died rather than allowing the parents to try all they can do. But rather than admit this we are told that they are the wise and kindly people who know what they are doing, we are awkward and unruly children causing a fuss.

Well thank God for the fuss that Charlie’s parents have made;  it may not save Charlie but they will have opened the eyes of many people and might save future families from the horror that they have had to endure. They truly are a heroic family who deserve our support (5)

 

 

 

 


[1] https://en.wikipedia.org/wiki/Best_interests

[2] https://en.wikipedia.org/wiki/Convention_on_the_Rights_of_the_Child

[3] https://www.publications.parliament.uk/pa/cm201012/cmselect/cmjust/518/51807.htm

[4] http://www.telegraph.co.uk/news/2017/07/07/hope-charlie-gard-great-ormond-street-seeks-explore-new-evidence/

[5] http://www.charliesfight.org/