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European court rejects parents’ appeal against removal of 2-year-old’s life-support treatment

The European Court of Human Rights in Strasbourg, France./ CherryX via Wikimedia (CC BY-SA 3.0).

The parents of a two-year-old girl lost their appeal to the European Court of Human Rights this week to block a U.K. hospital from removing her life-support treatment.

The court said in a letter to the parents of Alta Fixsler on Aug. 2 that it would not intervene following a U.K. court decision that life-sustaining treatment can be withdrawn from their daughter against their wishes.

David Foster, the family’s lawyer, told the BBC that the parents were “extremely disappointed” by the European court’s response.

“We are considering our next steps. The legal route has ended but it is still the case that an agreement could be reached,” he said.

Alta’s parents, who are Hasidic Jews, moved to the U.K. in 2014. Their daughter was born on Dec. 23, 2018, eight weeks premature and with a severe hypoxic-ischemic brain injury.

The Manchester University NHS Foundation Trust, which has treated Alta since birth using mechanical ventilation and a feeding tube, applied to the High Court after her parents disagreed with its proposal to withdraw life-sustaining treatment and transfer the child to palliative care.

Doctors believe that Alta has no chance of recovery and suffers from consistent pain, while her parents do not agree that she is in consistent pain and say that as Hasidic Jews they consider the sanctity of life to be a fundamental tenet.

On July 9, the Court of Appeal in London upheld a High Court decision on May 28 that it was “not in the best interests of Alta for life-sustaining medical treatment to be continued.”

The parents failed to overturn the ruling at the Supreme Court, the final court of appeal in the U.K. for civil cases.

They then attempted to bring the case to the European Court of Human Rights, an international court that interprets the European Convention on Human Rights, which continues to apply in the U.K. although it has left the European Union.

The case has drawn international scrutiny as Alta’s parents are Israeli citizens and her father also holds U.S. citizenship.

Hospitals in Israel and the U.S. have offered to treat the two-year-old and U.S. senators have intervened in the case.

A bioethicist said on Aug. 5 that there was a “fundamental problem” in recent U.K. court rulings on removing life-support from children against parents’ wishes.

David Albert Jones, director of the Anscombe Bioethics Centre in Oxford, England, commented: “One fundamental problem in these cases is the idea that there can be only one option that is in the child’s best interests because ‘there can only logically be one best option.’”

“The judge therefore seeks to identify what is best for the child independently of the wishes of the parents. However, this approach rests on the mistaken utilitarian idea that moral reasoning is a matter of mathematical calculation.”

“On the contrary, moral choices are typically between options that are good in different ways, where there are several options compatible with virtue and none is ‘the best’ in all respects.”

Jones said that the case of Alta Fixsler was similar in certain respects to those of Charlie Gard, Alfie Evans, Tafida Raqeeb, and Pippa Knight.

“These are all cases where the healthcare team caring for a severely ill child wished to withdraw life-sustaining treatment and the parents wished treatment to continue,” he noted.

“While the hospital in the U.K. was unwilling to continue to provide treatment, in all cases but one, an alternative hospital in another G7 country was willing to accept the child.”

“In all cases but one, the court declared that it would not be lawful to continue treatment in hospital or to transfer the child to be treated elsewhere.”

Jones argued that judges in such cases should focus on whether parents’ wishes were reasonable and what impact they would have on the child.

He said: “The question that judges should ask is not ‘What would I do if I were the parent of this child?’ but ‘Is the decision of the parents in this case reasonable, or does it place the child in undue danger of suffering harm?’”

The bioethicist observed that religion played a significant role in three of the cases: those of Alfie Evans (Catholicism), Tafida Raqeeb (Islam), and Alta Fixsler (Judaism).

He said that from a Catholic perspective, however, the principal issue was not religion itself.

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“Rather, it is a matter of the responsibility and thus the natural right of parents to make decisions on behalf of their children according to the principle of subsidiarity,” he suggested.

The European Court of Human Rights recognizes a “margin of appreciation” in that way that countries fulfill their obligations under the European Convention on Human Rights.

“The same principle should, but currently does not, inform the way English judges regard decisions of parents concerning the best interests of their child,” Jones proposed.

He added that the principle still allowed the state to intervene in family matters to prevent harm.

“Thus, even if the English law were to reflect this principle, there would be circumstances in which the courts would overrule the parents,” he said.

He recalled that doctors believe that Alta Fixsler has a very poor prognosis.

“At the same time there is credible evidence that the current provision of treatment causes her significant distress,” he wrote.

The appeal court judge emphasized this point, Jones said, and believed that transferring her to a hospital in Israel was likely to cause further distress.

“Although the judgment exhibits some confusion, common in such cases, between the pain or suffering caused by the child’s condition and the pain or suffering caused by the treatment itself, it was right for the judge to focus on the acceptability of treatment,” he wrote.

“On Catholic principles, moral determination is not only a matter of the end and object of an action but also of the circumstances.”

“In decisions relating to life-sustaining treatment, evidence that treatment itself causes pain or distress is a morally relevant circumstance. It is a reason not to impose that treatment, especially if the prospects of benefit are limited.”

In conclusion, Jones said it was remarkable that in most cases parents and healthcare professionals agreed on the course of treatment for severely ill children.

Where conflicts occur, he said, it was vital that courts respected parents’ decisions, except where they would lead to significant harm.

“Whether such action by a court is justified in a particular case depends crucially on the circumstances,” he wrote. “Furthermore, even when such action by the court is justified, the inability of doctors and parents to find a common mind still represents a failure of communication and a breakdown of trust.”

“Taking the decision away from the parents cannot but add to their grief.”

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