CNA Staff, Nov 17, 2023 / 16:20 pm (CNA).
Following the death of 8-month-old Indi Gregory last week, Catholics in the U.K. say the country’s medical and legal authorities need to place a greater emphasis on parental voices when difficult medical decisions arise — and codify that emphasis into law.
Indi, who suffered from a rare mitochondrial disease and was receiving life-sustaining treatment at a hospital in Nottingham since her birth, died in her mother’s arms in a hospice at 1:45 a.m. on Nov. 13. A judge had in mid-October ordered that it was in the child’s “best interests” to be removed from life support, despite her parents’ insistence that they wanted to seek additional treatment for their child at another hospital.
That hospital was the Bambino Gesù, a Vatican-run pediatric hospital in Rome, which offered to place a stent in Indi’s heart in an attempt to address cardiac issues and also carry out a number of additional experimental treatments. In a rare move, Italian officials convened an emergency meeting Nov. 6 to confer Italian citizenship on Indi in the hopes of facilitating her transfer to Rome, even offering to pay for her treatment there at no cost to British taxpayers.
In an ensuing legal dispute that baffled many non-U.K. observers, English judges largely ignored Italy’s actions and insisted that nothing more, medically, could be done to help the little girl. They also ruled that Indi’s life support was to be removed at the hospital or at a hospice and not at the child’s home as her parents had hoped, citing a need for “clinical treatment of the highest quality, carried out in a safe and sustainable setting.”
Indi’s case drew comparisons to the legal battles that ended in the deaths of Alfie Evans in 2018 and Charlie Gard in 2017. In both of those cases — which garnered international attention and criticism — courts ordered life support removed from the terminally ill children, despite offers of treatment at the Bambino Gesù and, in Gard’s case, in the United States.
David Jones, director of the Anscombe Bioethics Centre in Oxford, England, released a statement the day of Indi’s death on behalf of the Catholic bioethics organization, saying that the court’s decision to block Indi’s parents from seeking alternative treatment abroad — especially treatment in a European Union nation where the standard of health care is “certainly equivalent” to the U.K.’s — strikes many people outside the U.K. as “scandalous.”
Jones said in a subsequent interview with CNA that he believes the case is symptomatic of a wider societal problem in the U.K.
While acknowledging that having a national health system is good and positive, Jones said it is clear that the NHS and the U.K.’s court system need to “rediscover” the principle — a feature of Catholic teaching — that parents are and ought to be the primary caregivers for their children.
“[The] vision of subsidiarity that you have in Catholic social teaching is in tension with quite a common attitude in the United Kingdom, I would say, which almost takes the state position as the default…there’s a kind of distrust of parents, I think, in this country,” he said.
“There’s a tendency, in elements of English culture, to think that the state should just step in and solve the problem … which ends with disputes with institutions, with people dying in [the] hospital instead of at home.”
Why did Indi’s case end this way?
Jones explained to CNA that in his country, decisions involving a dispute between doctors and parents lie not with “the government,” per se, but with the judiciary. When a dispute arises between parents and a hospital, one of the parties — usually the trust running the hospital — will petition the courts to intervene. Specialized pediatric care is done at National Health Service (NHS)-run hospitals in the U.K., but the courts’ power extends over all U.K. hospitals, NHS or not, he said.
As a dispute progresses, the judge in the U.K.’s Court of Protection will hear arguments from three parties: the parents, the hospital trust, and a court-appointed guardian for the child. Then, the judge will make a decision — at least in theory — about what he or she thinks is in the “best interests” of the child.
“The court doesn’t have to wait until it’s shown that the parents are being harmful. They only have to show that there are two sets of people who are interested in the best interest of the child — the doctors and the parents — and they can’t agree. And so the court is going to make the decision for them,” Jones explained to CNA.
But, as demonstrated in the Indi Gregory case, this sometimes means the parents’ wishes are discounted in favor of the hospital trust, which he said “almost always opposes transfer of care.”
Medical disagreements in the Gregory case
Of course, disputed medical cases are by definition difficult to decide. In many cases, reasonable people might come to different conclusions. Jones said most cases of this type are resolved, usually by parents finally agreeing to withdraw life-sustaining treatment — but not always.
Citing Indi’s doctors, Justice Robert Peel’s original Oct. 13 order laid out details of the child’s condition at the time.
“She has been on full life support for about a month, critically ill and extremely unstable. She is intubated, ventilated, with multi-organ support, and sedated. She has the highest level of intensive care support and shows no sign of recovery. Her conditions are untreatable,” Peel wrote.
“It is of note that whereas her previous intubations lasted three to four days, this one has lasted a month, indicating the extent of her deterioration. Sadly, she is not, as the parents suggest, showing signs of improvement. There is no doubt in my mind that her presentation is on a rapid downward trajectory. She is now at the very limits of what is medically achievable for her.”
Indi’s parents, Dean Gregory and Claire Staniforth, disagreed with the doctors’ assessment that their child had shown no improvement. They insisted that Indi was responding to their touch and was happy when she was with her parents.
Later that month, the British advocacy group Christian Concern, which represented Indi’s parents, laid out the treatment plan they say they received from Tiziano Onesti, president of the Bambino Gesù Hospital, which included some experimental therapies.
“Two medical experts, a cardiologist and a medical geneticist, [a] pediatrician and an expert in mitochondrial disorders, have now provided opinion on the treatment Indi can receive, which is backed by the Italian hospital,” Christian Concern stated.
“One of the expert’s analysis, who cannot be named due to reporting restrictions, shows that Indi’s breathing problems are likely to be caused by her treatable heart condition, known as Tetralogy of Fallot, rather than — as previously thought — by brain damage from the mitochondrial disease.”
According to the statement, the unnamed expert said the problem can be fixed without surgery by inserting a catheter known as a “right ventricular outflow tract stent” through one of the vessels in Indi’s groin. The expert said that the treatment would “more likely than not” enable Indi to survive without artificial ventilation.
‘Final cruel twist’
In the final order Nov. 10, the U.K. judges ruled that the attempted Italian intervention in Indi’s case is “wholly misconceived” and “not in the spirit” of the 1996 Hague Convention, to which both the U.K. and Italy are parties and which Italian officials had appealed to as a basis for allowing Indi to be transferred to Italy.
“The court will not tolerate manipulative litigation tactics designed to frustrate orders that have been made after anxious consideration in the interests of children, interests that are always central to these grave decisions,” the order reads.
In his recent statement, Jones lamented the fact that the U.K.’s court system allows judges to “take this responsibility away from parents peremptorily… an injustice not only to them but also to children who have the right to be cared for by their parents.” He called the court’s decision to insist that Indi die in a clinical setting rather than at home a “final cruel twist.”
A hospital trust, in almost all disputed cases, is at a massive advantage, Jones noted, mainly because it has access to all the child’s medical information, as well as vast financial resources — in 2021, Nottingham University Hospitals NHS Trust had an annual budget of £1.3 billion ($1.6 billion), he said in his statement, while the Gregory parents are reliant on legal aid.
“The knowledge and the rights and the responsibility of parents for their own children isn’t given sufficient weight … the courts in the English courts always say, ‘Our paramount interest is not what the parents think or want or believe. It’s what’s best for the child,’ and treat the child almost as though the child were an orphan, I would say,” Jones continued, speaking with CNA.
“[The U.K. system] doesn’t have, I would say, sufficient checks and balances to give the parents a platform to have their say, and to slow down the process so the trust doesn’t act too soon,” he said.
‘Part of the human condition’
Indi’s parents are not Catholic, and Jones and others have noted that Catholics are not obliged to continue “extraordinary or disproportionate“ treatment if a life has reached its natural conclusion and medical intervention would not be beneficial, as St. John Paul II noted in Evangelium Vitae.
Speaking in a statement prior to Indi’s death, Bishop Patrick McKinney of Nottingham and Auxiliary Bishop John Sherrington of Westminster, the U.K.’s lead bishop for life issues, noted that the suspension of disproportionate therapies cannot justify the suspension of basic care such as hydration and nutrition.
“Prolonged terminal illness is, sadly, part of the human condition,” the bishops acknowledged.
“We should never act with the deliberate intention to end a human life, including the removal of basic care so that death might be achieved. We do, however, sometimes have to recognize the limitations of what can be done while always acting humanely in the service of the sick person until the time of natural death occurs. We hope and pray that, in the wake of this decision, the family are gradually able to find some peace over the coming days and weeks.”
What can be done?
As previously mentioned, Indi’s case was not the first high-profile one like it in recent years. In 2017, a British lawmaker, Baroness Ilora Finlay of Llandaff, introduced an amendment to the U.K.’s health care law following the death of Charlie Gard in an attempt to address the issues underlying that case.
Her amendment includes a provision that health authorities must take “all reasonable steps to ensure that the views of the parent, and of anyone else concerned with the welfare of the child, are listened to and taken into account.”
Jones told CNA that the proposed amendment also includes a requirement that the trust and the parents must have gone through some mediation procedure before taking the dispute to court. Oftentimes parents will be blindsided by the need to suddenly prepare themselves for a court case, which comes with significant financial and “human cost,” he noted.
Catholic leaders in the U.K. have backed the amendment, which would amend the country’s Health and Care Act 2022.
Bishops Sherrington and McKinney, in a statement released after Indi died, called the amendment a “simple way to begin to remedy” situations such as Indi’s.
“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,” the bishops wrote.
“With deep sadness we express our condolences to Dean and Claire … We assure them of our prayers and those of all the Catholic Community, including Pope Francis, at this sad time,” they continued.
“As a baptized child of God, we believe that she will now share in the joy of heaven after her short life which brought deep joy to her parents who loved and protected her as a precious gift of God.”