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Hugh Byrne is an NHS hospital consultant in London.

Last year, the Science Post published a satirical article reporting that a large children’s hospital in Sydney were to replace their doctors with parents who’ve done their research.

This joke circulated the internet and struck a chord with the twitter doctors in this country, because the increasing availability of information online means that the traditional paternalistic doctor-patient relationship has changed. We also live in an era where patients are treated as partners in the decision making process.

Paediatrics is a difficult speciality because the patients often cannot communicate or they will not understand what is happening, and the doctor-patient relationship is mediated by a third party, the parents.

One must always act in the child’s best interests, and in the tragic case of Charlie Gard that is now before the courts, it is apparent that there is disagreement not only between his parents and his doctors, but also between other experts, as to his suffering. This is not case of a right to die, but of a right to live.

Cases that get to this stage of the legal process are unusual, and this situation is not one of a child’s parents refusing treatment. There is no dispute between his parents (unmarried fathers may not automatically have a say), they are adults themselves, and they are not putting anybody else at risk of harm, as do those parents who object to vaccination.

The last such case to attract as much attention was that of Ashya King, whose parents wished to take him abroad for cancer treatment contrary to the advice of the local hospital. He is still alivem and the courts ruled in favour of his parents, although it has been reported in The Sun that the relationship between his family and the hospital has not been fully restored.

Professor Rob George of the St. Christopher’s Hospice in London has commented that the courts are avoided in most such cases because the parents and hospital usually come to a mutual realisation that efforts are futile.

It is difficult to understand why in this case, where such a juncture has not been reached, Great Ormond Street Children’s Hospital (GOSH) would not release Charlie into the care of other doctors who are prepared to continue treatment. Cost is a factor in all healthcare decisions, but this treatment would funded by donations and not the hospital.

GOSH have released a statement that says it is their unanimous view “that withdrawal of ventilation and palliative care are all that the hospital can offer him consistent with his welfare”. This is not all they could offer, because they could also offer to discharge him into the care of other clinicians.

There has also been the emotive use of the expression that further treatment would be ‘prolonging the agony’ for the child in question, which his parents find offensive. The proposed treatment may not help, but it may not necessarily cause harm either, or else no doctor would perform it under the first Hippocratic principle of primum non nocere (first, do no harm).

Allowing the parents to have their wish may also help them to reach that stage of mutual understanding with GOSH that was mentioned above, and the alternative (a legal dispute) would certainly prolong the ‘agony’ for all concerned.

It is not that GOSH’s case mix is so esoteric that they have found themselves in this situation, because similar discussions about the withdrawal of care are being resolved in paediatric units on a daily basis all over the country.

Their reputation as a hospital is that of rightly deserved excellence, but does this does not imply infallibility. We know that it is heretical to criticise the NHS, and one must preface every critique of it with a virtue signal, but GOSH is even more sacred than usual in the public eye. The London Olympic opening ceremony of 2012 not only contained a tribute to the entire NHS, but also singled out GOSH for praise.

While the fans of the NHS value its homogeneity, internationally renowned hospitals like GOSH or the Royal Marsden have efficient fundraising machines and private income streams that ordinary hospitals do not. However, it is assumed that the legal costs in this case are being met by the state.

Professor Nina Modi, the president of the Royal College of Paediatrics and Child Health, has stated that outside interventions are unhelpful because none of us know the full facts and details of the case. I agree that we do not, but I would not like to think that public opinion or debate is of no value in this matter of ethics. The law is, after all, based on precedent and the judgement of our peers.

The Lancet published an article in May of this year with the irony-dripping title ‘Is the NHS in crisis?’, a reference to the fact that media commentary by doctors is usually shroud-waving rather than constructive advice about the best ways to use of our tax funding in the NHS. The same article reports Professor Modi herself saying during a debate that “health is a moral responsibility of the state, a great duty of the state”.

Putting aside the obvious duties of the individual with regard to their health, it is the public who provide the state with the taxes that fund the health service and so they are entitled to a say in how it is delivered. While we do need an evidenced-based, value-for-money system that avoids unwarranted clinical variation (wasted treatments or investigations), the various cancer patients who have also had to go to the courts to fight for a treatment know that there is expertise outside of the NHS, and that warranted individual clinical variation is sometimes necessary.

The media have reported on offers of help in this situation from the Vatican with their traditional distrust of Catholicism, forgetting that the Catholic church is the world’s largest provider of healthcare (free or otherwise). The American pastor Patrick Mahoney has been supporting the family and has said that the greatest strain put on the family has been from the courts and the hospital, although it is unfortunate that his background history taints this observation.

Mike Pence has used the case to argue against nationalised systems of health insurance and while this is reactionary, there is grain of truth in there. It is easy to speak from the sidelines, but women who contributed to a phone-in on the BBC Asian network last week with their personal stories of having had children on life support gave us a glimpse of the agonising decisions that they had to make as to whether to prolong care or not, as well as into the range of feelings involved, including guilt and regret.

There may be no right or wrong answer in this case but a respect for individual autonomy, in this case those of the parents to exert their right to do what they feel is best for their child, must be shown.

20 comments for: Hugh Byrne: The NHS must do more to respect patients’ individual autonomy

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