Two Catholic bioethicists – one on each side of the Atlantic – agreed that parents in Great Britain do not have as much say in the medical treatment of their dependent children as they should.
Indi Gregory, an eight-month-old girl with severe medical issues, was removed from life support and died early Monday in a hospice in England. The case received worldwide attention, even eliciting special prayers of Pope Francis and an intervention by Italian Prime Minister Giorgia Meloni. The Vatican’s Bambino Gesù Pediatric Hospital offered to take the child for treatment, and the Italian government granted her citizenship and agreed to cover the cost of her medical treatment.
Born February 24 with a mitochondrial disease, Indi had received multiple surgeries and medical intervention at Queen’s Medical Centre in Nottingham, England. Her condition left her with brain damage. Her parents, Dean Gregory and Claire Staniforth, resisted the recommendation of her physicians to remove her from life support. Doctors testified in court that continued medical interventions were causing her severe pain and suffering and that the procedures offered little hope for recovery. They said her condition was irreversible and incurable, and that she did not have much time to live.
Justice Robert Peel of Britain’s High Court agreed with the nation's health system authorities, the NHS Trust, and ordered that life support be removed. He forbade the girl to be taken to Rome and in the end ordered that life support be removed in hospital or in a hospice, dashing the parents’ last hope that she at least be allowed to die at home.
“The legal battle between the NHS Trust and her parents shows again the need for greater weight to be given to the parental voice in these complex and sensitive cases," Bishop Patrick McKinney of Nottingham, England, and Bishop John Sherrington, Lead Bishop for Life Issues for England’s bishops conference, said in a statement. "A simple way to begin to remedy this would be to amend the Health and Care Act 2022 by reintroducing Baroness Ilora Finlay’s amendment on ‘Dispute resolution in children’s palliative care,’ formulated after the death of Charlie Gard."
There have been a number of high profile cases in the UK -- including Charlie Gard and Alfie Evans -- involving children being taken off life support at the order of a court against the will of parents.
Need for higher bar
While agreeing that there are cases where removal of life support is permissible – if the burdens of extraordinary care far outweigh their benefit and there is little prospect of recovery – David Albert Jones, director of the Anscombe Bioethics Centre in the UK, and Fr. Tad Pacholczyk, senior ethicist of the National Catholic Bioethics Center in the US, said in separate email interviews that there needs to be a higher bar for courts in Great Britain to take the decision away from such a patient’s parents.
“The parents, doctors, and courts should act in the best interest of the child, and sometimes this will mean withdrawing treatment,” Jones said. “However, the question is: Who decides what is in the best interest? The parents should be the first judges. However, in England the decision is taken out of the hands of parents too quickly, and when it goes to court the parents have little hope against the resources of the Hospital Trust.
"There is also a tendency, when a child is brain damaged, for doctors to overstate the burdens of treatment to the child and to dismiss signs of meaningful interaction between parents and child,” he continued. "It may be that for Indi the best decision was to withdraw invasive treatment but the decision was not made in the best way."
What is "meaningful"? What is "extraordinary"?
Jones noted that in legal proceedings, there was a tendency to deny that Indi experienced any meaningful quality of life, and never will. But, he asked, “what is ‘meaningful’ here?”
The ethicist contends that the Indi case and others like it “all show a tendency for the court-appointed guardian to say that people with brain damage have a quality of life that is not worth sustaining.”
Fr. Pacholczyk said the case and others like it “raise questions about whether the life support she was receiving should have been considered ‘extraordinary’ or not, and whether further therapy, even in an experimental form, might have been reasonable and worth pursuing, and whether the parents or others should ultimately decide.”
And who decides?
Even with the intensive interventions Indi had been receiving, “the ethical ‘rub’ in her case largely revolved around the question of who should be making determinations and decisions regarding care: the hospital, the courts, or her parents,” said the priest, a Yale-educated neuroscientist.
“Who has ‘inherent jurisdiction,’ as the court papers termed it? It is shocking how in several of these cases the hospital has apparently been allowed to retain and ‘hold captive’ the patient, ignoring parental jurisdiction even to the point of precluding transfer to other venues or health care settings,” he said.
Bambino Gesù declined to comment on whether they felt they could have provided some kind of care or treatment that Indi had not been receiving in England.
“The Bambino Gesù Hospital has chosen not to release statements or comments regarding Indi Gregory's case,” a spokeswoman, Chiara Santomiero, said. “In this, as in other similar cases, the hospital expressed its willingness to welcome the little girl and her parents.”
Heightened dialogue needed
Fr. Pacholczyk said that in cases of disagreement, there should be a “heightened dialogue and expanded interactions between the hospital and the family, so they can reach a shared and reasonable conclusion together.”
“It is tragic when hospitals do not energetically and persistently pursue such a goal with the families they are called to serve,” he lamented.
The priest opined that a decision to discontinue particular medical interventions should remain with the patient — or, in this case, with the parents as the patient’s proxy.
“The process of dying typically involves many twists and turns, and numerous circumstance-dependent decisions that may change over time, so parents who closely accompany their own children are typically best suited to assess these details and make the needed decisions in close consultation with the healthcare team,” he said. “The bar needs to be set very high if decision-making authority is going to be stripped from parents, and usually there needs to be a strong indicator that parents are seriously unfit to care for their children or are abusing them in some overt manner.”
“Parents are presumptively and reasonably assumed to have the best interests of their child in mind,” he concluded, “and when there are competing claims as in Indi's case, the parents’ judgment should be respected, and if needed, challenged and refined through further dialogue, rather than being forcibly transferred to an outside entity like Queen’s Medical Centre or The Royal Court of Justice."
