Parents, the State and Charlie Gard

Parents, the State and Charlie Gard

Last Friday evening one of the most controversial ethical debates of recent years came to a heart-breaking, but by then inevitable, conclusion. Charlie Gard, the terminally ill baby who had become the centre of a drawn-out legal battle, died just days from his first birthday.

Great Ormond Street Hospital (GOSH) had argued it was no longer in Charlie’s best interests to continue artificial ventilation. His parents disagreed, saying their child had a chance of survival if he could undergo an experimental treatment in the United States.

The story gathered global media interest, with Pope Francis and Donald Trump joining the many interventions.

Catholics have appeared divided over the case, however, with some saying the hospital made the right call and others accusing it of violating fundamental parental rights.

Nowhere was this division more apparent than at the top of the Church. In June the Pontifical Academy for Life appeared to side with the hospital, saying that while the interests of the patient were paramount, “we must also accept the limits of medicine and … avoid aggressive medical procedures that are disproportionate to any ex­pected results or excessively burdensome to the patient or the family”.

The statement generated a considerable amount of criticism and, days later, Pope Francis offered a different message. The Vatican press office said: “The Holy Father follows with affection and emotion the case of little Charlie Gard and expresses his own closeness to his parents. For them he prays, hoping that their desire to accompany and care for their own child to the end is not ignored.”

Last week the bishops of England and Wales appeared more sympathetic to GOSH, saying it was “important to remember that all involved in these agonising decisions have sought to act with integrity and for Charlie’s good as they see it”.

“The professionalism, love and care for severely ill children consistently shown at the Great Ormond Street Hospital is also to be recognised and applauded,” the bishops said.

The Anscombe Bioethics Centre, a Catholic institute based in Oxford, took a position somewhere in the middle. It said stopping treatment might be the right decision, but criticised the erosion of parental rights: “Only after parents have been shown to be acting or seeking to act very unreasonably and exposing their child to a risk of significant harm, albeit with good intentions, should such decisions be taken out of their hands.”

The question centres on whether Charlie’s parents had the right to pursue treatment for their son to the very end, or whether it would be more prudent to switch off his life support, and end his suffering, if doctors said treatment was unlikely to work.

Although aspects of the Charlie Gard case are very specific, the Church does provide general rules on the rights of parents.

In Familiaris Consortio, St John Paul II spoke of the “irreplaceable and inalienable” right and duty of parents towards their children which is “incapable of being entirely delegated to or usurped by others”. Before that, the Vatican II document Gravissimum Educationis said parents had an “inalienable right” and “fullest liberty” to bear the main responsibility for their child’s education.

So does the Church ever permit the state to intervene against parents’ wishes? Canon lawyer Ed Condon says the Church does recognise the possibility of children being taken out of their parents’ custody in the case of abuse and neglect. However, this rests on the principle of defending the child’s life and innocence when they are clearly in danger. “The basic Church teaching would be the right and imperative to preserve life and, since it stems from this, that establishes the standards which must be met to remove a child, i.e., a threat to a child’s physical safety.”

No one would argue this applies in case of Charlie Gard, but Catholics do disagree on whether it is compassionate to keep someone alive in suffering when hope is apparently lost.

In the case of a terminally ill adult, withdrawing life support is permissible. But in the case of a terminally ill child who is still under the guardianship of his parents, the weight of Church teaching presumes parents have an instinctive and privileged natural law understanding of the child’s best interests.

Charlie Gard is unlikely to be the last case showing this tension. Perhaps next time Church authorities will be clearer on fundamental teaching, and provide a more united front.