Under Sentence of Death: Charlie Gard and the GOSH
by Mark John Maguire
A child of 11 months is currently in the Great Ormond Street Hospital (GOSH), London, which determined in January of this year that his prospects for life were so limited that, in spite of his parents' wishes to save him, he should die. The case of Charlie Gard has attracted considerable attention worldwide in recent months and a great deal of misinformation has been peddled by media, by social media and by GOSH itself. The parents have tried everything to save their son, but armed with a Court Order, GOSH has prevailed: Charlie must die within the next few days. Effectively the appeals process to save Charlie ran out in June - in spite of last ditch attempts to save him by, inter alia, the Pope and the US President, such efforts have failed and Charlie's life has been ordered to be terminated by High Court Judge Francis. These are the barest possible facts of a complex and depressing case of a child born with a debilitating disease which he was unlikely to survive. The cutting-edge treatment proposed in the US was not proven and may or may not have saved Charlie - we and his parents will never now know. But as so often on such occasions, the case has long ceased to be about Charlie or about his medical condition: it has moved into the province of public polity and to the reputation of GOSH as a leading hospital.
The public face-off between the feisty and devoted parents, who refused to bow down to the State in its medical/political and judicial manifestations, has been compelling. The State won, of course, but the question should the State have power to end a child's life even when the parents wish to preserve it has become of great interest. In the UK at least, it has been ruled that a parent has no rights in this matter and the State has a direct responsibility to the child which may include the decision to take the child's life if it is deemed appropriate. This narrative has been played out very publicly and has become a flexing of muscles by Great Ormond Street Hospital and the UK Medical Establishment, which, since January 2017 has repeatedly blocked attempts by medical authorities across the world to try to preserve Charlie's life and this has led to accusations that it is seeking only to preserve its own reputation on the basis that successful treatment elsewhere would seriously damage the GOSH brand. Put in the bluntest possible terms, "Charlie must die". But this is certainly not simply a matter of ego: GOSH exists in the main on the basis of charitable donations which are given on the basis of its reputation for clinical excellence: to have that image tarnished by a baby they have declared incurable being healed by a medical facility elsewhere would seriously undermine that claim. The politics have become extremely ferocious as GOSH PR has gone into overdrive, wheeling out its celebrity doctors to espouse its cause: attacks have been made on US doctors, on their motives and the constant reassertion has been made throughout, as a mantra, that "we are the best in the world", "we have the best doctors", "we know what is best for Charlie". But this self-centred approach has rendered them open to widespread criticisms that GOSH has become blinded by an institutional arrogance - to the point where it seems Charlie has been forgotten and has become a pawn in their game. Indeed, the purpose of a hospital as an institution, which is to serve the community, to heal, seems to have been given scant regard in the sorry saga of Charlie Gard. Donations and funds have been squandered to preserve this position - reputation is at stake - and as a result of the delays, the unseemly bickering, the time spent on PR and Board meetings, the anger at the parents and at others questioning their competence, Charlie can no longer be saved. He will die by the hand of an unknown doctor who will turn off his life support systems in the next few days. "Nature will take its course" says the hospital; "Charlie will be executed" say the opponents. Between these 2 extremes there is only one certainty: that Charlie's life will be ended by the flick of a switch as surely as if it was a hangman's trap: Charlie will die within minutes. This minor tragedy which has captured the world and the plight of this 11 month old child has made the GOSH infamous across the world with good reason - not for its medical prowess, but for its arrogance; for its casual disregard for the parents and for the community it serves; for the sick children who deserve their care and attention; for the religious and political leaders who have sought to save him - and ultimately for its dismissal of Charlie himself as if he were a sick puppy.
The ramifications of this case are far-reaching too: is this the future for the UK in a Brave New World? That the State may determine life and death over a patient where they deem such life to be "non-viable" or "intolerable to the individual"? What then are the implications for the sick and disabled who are unable to communicate their wishes to medical staff? On the basis of this precedent, they are all candidates for termination. It is the deepest of human instincts to preserve life and that instinct must be respected above the needs of hospitals and governments and all the paraphernalia of the State to exert their authority for whatever reason.
Should hospital authorities be permitted to make decisions on behalf of individuals who cannot communicate their wishes? Of course they must as a practical necessity, but it must only be where there is no greater authority present - and certainly not in defiance of the family and others who would differ in their medical assessment: above all, that fine Hippocratic Oath, so neglected in much of our medical fraternity, should be observed: do no harm. Harm has been done and in the next few days Charlie must die.
Above all, when we allow the State to determine who should live and who should die over the will of the family we are admitting a great evil into our presence: only the natural unit of the family can make such decisions and where such decisions are equivocal, open to dispute and their consequence so final, we must err on the side of caution and trust them because the alternative is too dire to contemplate: to allow such decisions to be made by the artificial construct of a hospital Board with its internal processes and its conflicting resource and financial issues imperils us all. The prospect for parents of sick children in the UK is chilling: a parent who takes their sick child to hospital effectively loses control and they become the property of the State. Should the hospital determine that their life is "not viable", "intolerable" for any reason of its choosing, then their life may be terminated without the family being allowed to seek alternative treatment: they will simply be relegated to observers as their child is terminated before their eyes. The GOSH has since refused to allow Charlie to die at home and insists that the termination will be carried out in their premises and by their hand. It remains to be seen whether the hospital will release the dead body or declare it hospital property to use for research or the harvesting of organs. I have seen it suggested that if this had been in the US and the hospital had persistently blocked all attempts of the parents to seek alternative treatment, care and assistance from alternative sources, then it would warrant a charge of medical negligence or even of second degree murder being made against them. That does not apply in the UK, obviously, where the rights of the State to decide suppresses all other rights of individuals, families etc - but in moral terms at least, I believe that GOSH has a grave charge looming over it. It is a shadow it will find it hard to dispel.
Charlie Gard is under sentence of death, a hostage to the Great Ormond Street Hospital - and in a very real sense, so are we all.