A ray of hope might be on the horizon for campaigners and parents seeking to challenge the absolute power of the NHS and the courts in deciding to end the life of seriously ill children.

Baroness Ilora Findlay has tabled an amendment to the forthcoming Health and Care Bill to allow parents a say in life-or-death decisions about children. This will involve a new system of mediation when parents and doctors disagree, a right to a second medical opinion, and access to legal aid. The proposed law would also prevent judges from stopping parents taking their children overseas for medical treatment from respected medical institutions, provided there is no major risk of harm to the child.

The amendment is something the parents of Charlie Gard have been campaigning for since they lost a five-month legal battle with Great Ormond Street NHS Trust. They wanted to take Charlie to America for experimental therapy to treat a rare genetic condition but his life support was removed by the Trust in July 2017, a week before his first birthday, after a tortuous legal battle fought in the full glare of the media.

In 2018, Alfie Evans died just before his second birthday. He had been suffering from a degenerative neurological condition. His parents Tom Evans and Kate James wanted to take him to Rome for treatment that may have prolonged his life. They mounted a spirited campaign supported by Catholics and others around the world but lost after a four-month battle with Alder Hey NHS Trust in the High Court.

In 2021, the Hasidic Jewish parents of toddler, Alta Fixsler, endured a year-long battle with Manchester University NHS Trust who decided that it was in Alta’s “best interest” to withdraw her life-sustaining ventilation. The Trust also secured a court ruling to ban Alta’s parents Chaya and Abraham from taking Alta home to die. Her life support was removed in October 2021 and she died very shortly afterwards.

In May 2021, six-year-old Pippa Knight died in hospital after her mother, Paula Parfitt, failed to persuade the High Court to let her take Pippa for a homecare trial with specialist doctors.

In February 2019, five-year old Tafida Raqeeb experienced a catastrophic brain injury. Barts Health NHS Trust tried to remove life support and block Tafida from being taken abroad for more treatment. Tafida’s parents were taken to the High Court by the Trust which lost. Her parents took her to Italy where her condition improved to such an extent that she came out of intensive care and off ventilation.

These cases deserve scrutiny because they reveal the powerlessness of the parents, the scant regard for the sanctity of life, and the horror of a system that drags parents through the courts when they are vulnerable and grieving.

The legal basis of the system that has trampled over parental rights in these cases is the Children Act 1989. The Act had hugely positive consequences for child safety, coming at the end of an era that saw serial institutionalised abuses on a horrific scale. Modern safeguarding regimes and public awareness are a direct result.

But good laws often have unintended consequences. In his 2017 judgment on the Charlie Gard case the Hon Mr Justice Francis says the Children Act’s central “best interest” proposition is “hard to criticise”. “When a court determines any question with respect to the upbringing of a child the child’s welfare shall be the court’s paramount consideration”.

Of course “best interest” is much more complex than that. As David Albert Jones, director of the Anscombe Bioethics Centre in Oxford, has said: “One fundamental problem 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, … 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.”

To his credit in his judgment in GOSH v Gard, Judge Francis acknowledged the need for mediation: “It is my clear view that mediation should be attempted in all cases such as this one even if all that it does is achieve a greater understanding by the parties of each other’s positions. Few users of the court system will be in a greater state of turmoil and grief than parents in the position these parents have been in.”

Fundamentally, however, this issue is about the power and behaviour of NHS Trusts. It is NHS clinicians and Trusts that choose to bring these cases to court. It is the NHS Trusts that ought to engage with and consult grieving parents in an appropriate way, resolving conflicts sensitively and carefully. It is NHS clinicians who apparently know better than clinical counterparts in America, Italy, and Israel, many of which boast world-renowned centres of excellence. In what way is it appropriate to deploy formidable legal and public relations resources, dragging desperate parents through the English courts, causing untold anguish while they should be caring for their sick child? 

Do not expect anybody to tackle the NHS on this issue in the coming weeks. The NHS has a kind of sacrosanct quality, and criticism is unpopular and dangerous. But Baroness Findlay may succeed in opening up a space for NHS and parents to resolve their differences in these heart-rending cases. There is, she says “no greater nightmare for a parent” than having to fight for the life of a critically ill or dying child and looking abroad for therapies under development only to find that domestic clinicians disagree.

The 1980 Declaration on Euthanasia, the Catholic Church’s official document on the issue states “What a sick person needs, besides medical care, is love, the human and supernatural warmth with which the sick person can and ought to be surrounded by all those close to him or her, parents and children, doctors and nurses.” If Charlie Gard’s legacy can become a reminder that care, love and warmth must be at the very centre of a dying child’s experience, then it deserves all the support it can get. 

Justin Doherty is a campaigner on end of life issues.

This article first appeared in the February 2022 issue of the Catholic Herald. Subscribe today.

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