Bioethicists: ruling to withdraw life-sustaining treatment from 5-year-old ‘deeply flawed’

SPUC quoted Pippa’s mother as saying: “I don’t understand why the hospital and the court wouldn’t let me find out whether Pippa could come home to be cared for with all her family around her, when two independent doctors from reputable hospitals in England both said that they thought this was worth trying.”

“Instead, the court has decided that all Pippa’s treatment should be withdrawn so that she dies.”

Judge Nigel Poole, who took evidence at a hearing in the Family Division of the High Court in London in December, said that specialists should continue treating Pippa while Parfitt arranges her appeal.

Pippa was born in 2015. In December 2016, she fell ill and began suffering seizures. Doctors diagnosed her with acute necrotizing encephalopathy, a rare form of brain damage marked by multiple bilateral lesions.

In a detailed analysis of the court judgment, also released on Feb. 4, Anscombe Bioethics Centre director David Albert Jones said that the case had similarities with those of Charlie Gard and Alfie Evans, in which ventilation was withdrawn against their parents’ wishes.

He said that withdrawing life-sustaining treatment could be justified if it no longer serves its purpose or is “excessively burdensome.”

“On the other hand, withdrawal of life-sustaining treatment when treatment would have been beneficial and not unduly burdensome is nothing less than abandonment,” he wrote.

“Furthermore, even if withdrawal of treatment is justifiable, it is important that the decision is made for the right reasons. In the case of Pippa Knight, as in the two former cases, the ethical reasoning is deeply flawed.”

Jones noted that the United Nations Convention on the Rights of the Child says that a child has, “as far as possible, the right to know and be cared for by his or her parents.”

“The right of Pippa to be cared for by her mother, as far as possible, includes the right of Pippa to have her mother make decisions in relation to her care,” he said. 

“It is a right that is violated when decisions are taken out of the hands of her mother without very serious reason.”

He argued that while the state can intervene in “extreme cases,” it must not “usurp the role of the parent unless it can show the parent is being clearly unreasonable such that the child is in danger.”

He said: “This principle is accepted in English law when it comes to issues of child protection and taking children into care. However, in relation to medical decision-making the law has been seriously distorted by a previous judgment in which Justice Holman stated [in a 2006 case] that the wishes of parents ‘are wholly irrelevant to consideration of the objective best interests of the child.’” 

“This sweeping statement now has to be qualified, thanks to the [2017] judgment of the European Court of Human Rights in the case of Charlie Gard. However, English judges still struggle to recognize that respecting the decision of the parent is respecting the right of the child to be cared for by their parent, as far as possible.”

Jones observed that medical experts offered different opinions on the best way forward for the five-year-old from the county of Kent, south east England.

“There was agreement that Pippa’s condition had been static for well over a year and that there is no prospect of any improvement. There was agreement that care for Pippa at home would not be straightforward,” he wrote.

“At best it would be risky and it might not be medically possible. Nevertheless, more than one doctor was of the opinion that it was at least worth trying, given that the alternative was immediate withdrawal of ventilation.”

He continued: “Given that medical experts took different views, it was clearly reasonable for Pippa’s mother to seek to follow the opinion that accorded with her view of the child’s best interests. It is unjust in such a case for the judge to take this decision away from her.”

The Anscombe Bioethics Centre recently raised concerns about a separate court ruling that allowed the withdrawal of food and water from a practicing Catholic patient. The patient, identified only as “RS,” died in January despite last-minute efforts by bishops and government officials to bring him to his native Poland for treatment. 

Concluding his analysis, Jones said: “The decision of the High Court is currently under appeal. It remains to be seen whether this deeply flawed decision will be overturned.”

“Whatever the legal outcome, the staff of the Anscombe Bioethics Centre wish to express our solidarity with Pippa, her mother and all her family as they go through this deeply painful time and assure them of our prayers for Pippa and for those around her.”