Doctors treating seriously ill babies are quitting their jobs due to “significant moral distress” caused by a right-wing Christian group behind a series of end-of-life lawsuits, the Guardian has been told.
Senior doctors claimed the behavior of some evangelical campaigners is ‘prolonging the suffering of seriously ill babies’. They accused them of “selling falsehoods and lies” to families and of using legal tactics that were condemned by judges.
A pediatric intensive care consultant has described being pelted with eggs and ‘choked’ in a hospital during protests over the case of Alfie Evans, a toddler whose life support was removed after a high-profile court case in 2018.
He said: “These groups are complicit in prolonging suffering and not allowing a good death, making someone’s death longer and more painful than it needs to be. That’s what keeps us up at night.”
An appeal court judge this month expressed “deep concern” about the use of “manipulative trial tactics” in the case of Indi Gregory, a seriously ill girl who died on November 13 after a legal battle over her treatment.
It was the latest in a series of high-profile end-of-life cases brought by the campaign group Christian Legal Center (CLC), which also represented Charlie Gard’s parents, Alfie Evans and Archie Battersbee.
Andrea Williams, chief executive of the CLC, said it was “very perverse” to accuse the company of prolonging suffering because “we don’t take legal action, they (the NHS trusts) do”.
In the Indi Gregory case, judges had ordered the eight-month-old child’s life support switched off after doctors showed that further treatment was “painful, hopeless and contrary to her best interests”.
Indi’s parents disagreed and appealed to the European Court of Human Rights, followed by a series of unsuccessful legal challenges, backed by the CLC.
The Guardian has learned that the London-based group worked with a right-wing former Italian senator, Simone Pillon, in an attempt to have Indi flown to the Vatican Children’s Hospital for treatment.
Pillon said Indi was a victim of ‘oppression’ and went ‘like a lamb to the slaughter’.
Lord Justice Peter Jackson said it was “deep concerns” that the legal maneuvers in Indi’s case had diverted attention from the seriously ill baby.
The judge said the six hearings in 25 days involved “very important preparation” by Indi’s medical team and “distracted attention from Indi herself”.
It had been “extremely challenging” for doctors, he said, who were caring for 12 other seriously ill babies at the same time.
Williams said Indi “would still be alive today” in hospital in Rome “if the NHS and the courts had released her”.
She added: “Evidence from medical experts had identified a cardiological treatment that would have allowed her to survive without ventilation, free from any associated pain or anxiety.”
The judge of the Supreme Court Sir Robert Peel found that the “entire medical evidence is unanimous” that Indi “was now almost certainly permanently intubated.” Her condition was “irreversible and untreatable,” the judge said.
The CLC says it is a lifeline for families who cannot compete financially with NHS trusts.
However, there is increasing concern within the judiciary and the medical community about its influence.
Prof. Neena Modi, president-elect of the European Association of Perinatal Medicine, claimed the CLC “preys on parents when they are most vulnerable.”
She said the company is causing “harm” by apparently destroying trust between parents and healthcare teams, and by giving families “false hope” instead of helping them grieve.
She said she believed they had tricked gullible citizens into giving donations, and that they were “prolonging the suffering of patients whose main need was to be helped to have a good death.”
A pediatric intensive care consultant, who did not want to be named, said she thought the organization was putting “enormous pressure” on families to feel that “the only way they can be a good parent is to jump these legal hoops. , otherwise they would not have done their best for the child.” She added: “While doing their best for the child limits their suffering.”
Another pediatric intensive care doctor claimed the abuse and burnout had led to “significant bleeding” among medical specialists, adding to the pressure on pediatric intensive care units.
They said: “The focus is always on the child, but a side effect is the significant moral distress of everyone who works with that child because we are essentially prolonging the suffering.
“We are in a sense complicit in it (the suffering) because we have to continue to care for that child clinically for longer.”
The doctor, who was involved in the treatment of Alfie Evans in 2018, said the targeting of medics in that case had prompted many professionals to quit: “The number of nurses lost in the aftermath of that was staggering. There was such a big crisis in retention. It was pretty terrible.”
The consultants agreed to speak on condition of anonymity because they were not authorized by the NHS to speak publicly about these cases.
Williams said it was perverse to blame the CLC for causing suffering to medical professionals.
She added: “It is true that involvement in life and death decisions can cause moral distress for the professionals, but how does this compare to the pain of families who have to go through the legal processes in which life and death decisions are made about their loved ones by the power of the state.”
A judge in the Indi Gregory case has singled out the CLC’s legal adviser, Pavel Stroilov, for criticism, suggesting he was “getting out of control”. Stroilov is not a qualified lawyer.
Stroilov, a former adviser to former UKIP leader Gerard Batten, was described by a judge in the Alfie Evans case as a “fanatical and misguided young man” whose “evil hand was”inconsistent with the real interests of the parents’ case”. Stroilov has been contacted for comment.
In 2020, a judge criticized it as “demonstrably unlawful” the actions of a woman represented by the CLC who had secretly filmed a severely disabled, estranged family member in hospital so that the clips, which lasted less than three minutes in total, could be used as the basis for a medical opinion by a doctor obtained by the campaign group.
The Christian Legal Center, part of Christian Concern, is at the center of a well-funded international alliance of right-wing evangelical groups that oppose LGBTQ+ rights, abortion and gay marriage.
Until August, families at the center of distressing end-of-life cases were not entitled to government funding, an obstacle described as “scandalous” by a Supreme Court judge in the Indi Gregory case.
This meant that families wishing to take on a legal challenge against doctors’ decisions had to fund this themselves at significant cost – or rely on organizations such as the CLC.
The Solicitors Regulation Authority (SRA) investigated the CLC following the Alfie Evans case in 2018. However, the firm does not fall under the SRA’s remit as it is not a registered law firm.
A pediatric intensive care doctor said this legal gray area allowed activists to act with impunity. He added: “There needs to be proper regulation for anyone acting in a legal capacity representing these families.”
The Pediatric Critical Care Society, which represents medical professionals who treat the most seriously ill children, said: “While it is critical to respect the rights of all parties involved and ensure that the best interests of the child are represented, it is it is equally important to take into account the possible consequences of protracted legal disputes between the families involved and the health care personnel involved.”