After having the hospital equipment that kept her alive turned off – even with Italy offering citizenship, transfer and treatment without burdening her home country – British Indi Gregory, just eight months old, was yet another victim of England’s healthcare system. Launched in 1948, the NHS [sigla em inglês para Serviço Nacional de Saúde], which prides itself on being “the largest publicly funded health service in the world”, has a history of going to court to terminate treatment of underage patients (mostly babies) deemed beyond cure. your doctors. As in Indi’s case, the NHS has won litigation in court, even though the parents of “terminal” patients appeal, presenting alternative treatments in other countries.
The same NHS that says that the “ideal that good health care should be available to everyone, regardless of wealth” uses, not infrequently, existing jurisprudence in England, to get the courts to apply it in cases like of Indi to section 8 of the Children’s Act 1989. In a simplified way, the legislation establishes the superiority of the court’s decision over that of the parents in deciding what is in the child’s best interests.
In other words, the government health system would be able to more clearly discern (among the reasons for not having the emotional involvement common to parents) what is best for a minor’s well-being. The medical staff at Queen’s Medical Center, where Indi Gregory was hospitalized, argued that she was dying and that the treatment applied only caused pain to an unconscious person. “Dying in peace”, therefore, would be the best alternative in the experts’ view. Although the parents disagreed, the courts sided with the doctors.
After a lower court ruled that removing life support was in Indi’s best interest and that she should die in a healthcare institution, the parents and the Italian government asked the court for permission for the little girl to be treated at the Children’s Hospital. Bambino Gesu, in Rome. The institution, linked to the Vatican, committed to covering all costs.
Court of Appeal Judge Peter Jackson said doctors caring for Indi and other seriously ill children were placed in an “extremely challenging” position in these legal disputes, and condemned what he called “manipulative litigation tactics”. , whose objective would be to frustrate court orders. “Such actions will not be tolerated,” Jackson said. According to the decision, the attempted Italian intervention in the case is “totally ill-conceived” and “not in the spirit” of the Hague Convention, which has the United Kingdom and Italy as signatories.
Researcher at the Independent Women’s Forum [Fórum Independente de Mulheres, uma organização americana conservadora com foco em questões de política econômica que preocupam as mulheres], Madeleine Kearns admits that “doctors may be best placed to assess Indi’s physical condition. The judge and the court-appointed guardian—a third party interposed when a child’s best interests are in dispute—can be more objective in their analysis of the facts.” Still, Madeleine argues that “clinical judgment should not be proxied . And medical expertise should not be understood as moral authority. Doctors can make recommendations. They can certainly refuse to do what they consider to be bad medical or ethical practice. But in the end, the patient – or in this case, the family of the patient – must be free to go elsewhere.”
For her, the fact that parents are prohibited from taking their daughter to receive treatment elsewhere reinforces a dangerous precedent in the British healthcare system. “If courts can intervene to usurp parental rights in these types of end-of-life cases, it is conceivable that in the future they could do so when a patient’s doctors prefer euthanasia,” she says.
Indi was born on February 24, with a rare mitochondrial disease, with no known cure to date, which affects energy production in her body’s cells. She died in the early hours of November 13, after hospital equipment was turned off by court order. Even the parents’ attempt to have her die at home was rejected by the courts, which ordered the baby to be transferred to a palliative care unit.
The previous week, English High Court judge Robert Peel banned Indi’s transfer to Rome, claiming there was no evidence that the treatment proposed by the Vatican hospital would improve the patient’s quality of life. According to him, the attempt, on the contrary, would “perpetuate a high level of pain and suffering” for the baby, who already had frequent pain and an “extremely limited quality of life”.
The Indi Gregory case is the latest in a series of legal disputes between doctors and families of children and teenagers in the UK. Among the battles won by the healthcare system in court are the cases of 12-year-old Archie Battersbee, who was removed from life support last year; of Charlie Gard, who suffered from a mitochondrial disease, like Indi, and died at 11 months, after his treatment ended in 2017; and Alfie Evans, who suffered from a rare degenerative brain disease and had his life support turned off at 23 months old, in 2018;
In September, Sudiksha Thirumalesh, 19, who suffered from a rare disease causing chronic muscle weakness, died after Birmingham hospital decided to stop dialysis treatment and transfer her to palliative care. Without brain damage, she asked her lawyers to arrange a transfer to Canada, where she would undergo experimental treatment, but the British court denied the request. I want to die trying to live. We have to try everything,” said the girl.
In 2014, the parents of five-year-old Ashya King, affected by a brain tumor, “kidnapped” their son from Southampton General Hospital, in England, so that the courts would not impose a death sentence on him as if it were something “ your greatest interest.” The couple were arrested in Spain, but managed to take their son to the Czech Republic, where proton therapy was effective in curing cancer.
“In some cases, families opted for the de facto route: directly taking the minor without waiting for authorization, as happened with Ashya King. It is the sad consequence of the restrictive jurisprudence that seems to be consolidated [no Reino Unido]”, says Guillermo Morales Sancho, lawyer at Alliance Defending Freedom [Aliança em Defesa da Liberdade]which offers legal support in such cases.