Andrea Williams, chief executive of Christian Concern, comments on how legal cases determining the 'best interests' have shifted in the past thirty years.
So, it is happening again. Another judge in the Family Division has decreed, at a secret hearing, that it is in the best interests of an unknown baby to die now – contrary to his parents’ wishes. As is normal, this decision is taken and executed behind closed doors for the sake of the baby’s ‘privacy and dignity’. We are forbidden to know the name of the baby, the names of his parents, or the name of the hospital. All we know is that one of these days, a humane, respectable and anonymous health professional will switch off life support, causing a speedy death of the boy; and any resistance to this course of action by the parents or anybody else is a criminal offence.
Maybe the tubes have been pulled already, and the boy is now dead.
We know that doctors have said, and the judge agreed, that the baby had “serious heart and neurological abnormalities”, was suffering daily “discomfort” and “what is perceived to be pain”; so his quality of life was low; and it was predicted he probably would not have survived till Christmas anyway. To some, this is the end of the controversy - albeit, of course, not of the tragedy. At least, given the scarcity of the factual detail revealed to us, people tend to defer to the opinion of professionals who have examined the evidence thoroughly.
I beg to differ. We’ve only had a glimpse of the medical evidence, and from what we know, it does not seem to be very precise or very confident. It has never been properly tested in court. From the brief newspaper report, it appears that this was the usual duel between a highly experienced and professional medical and legal team advocating a speedy death - and a couple of parents, one of them with learning difficulties, not necessarily very articulate, not necessarily in the best form, knowing little law or medicine - begging for mercy.
Nor could there be any public scrutiny of the evidence, because the hearing was in secret. Those who presented the evidence knew from the outset that it would never be properly tested. One can take the view that the professionals (doctors, social workers, lawyers and the judge) know best and should be trusted. But it is absurd to pretend that the respective merits of alternative views about the best interests of this child have now been tested at a fair trial.
Whether a life is ‘worth living’ is a moral and philosophical question, not a medical or legal one. Illness, pain and suffering may make the dilemma more acute, but do not alter its nature. The modern secular consensus (which is reflected in the medical guidelines for withdrawal of life support) is that a life which is devoid of pleasures and/or accompanied by too much suffering is ‘futile’. As Christians, we absolutely reject this philosophy. This is not the place to argue this out. The point is that in a society claiming to be ‘free’ in any sense, decisions of this nature cannot be made by public authorities.
The ultimate question of all such cases is who has the right to make that agonisingly difficult choice about life and death of a very ill child - who, at his age, cannot take it for himself. By natural justice and reason, that right belongs to the parents. Parents can be assumed to love their child. State-sponsored professionals may be good, sincere, compassionate and altruistic people, but that is not the same thing.
Where the power to decide it taken away from the parents, it does not take long to result in the ghastly scenes we saw in Alfie Evans’s case: dozens of police officers enforcing the court’s decision that a child must die at an appointed hour in an appointed place, guarding him against his parents’ desperate attempts to save his life.
The cases of Charlie Gard, Isaiah Haastrup, and most recently Alfie Evans have awakened the world to the grim reality of the state determining the best interests of children to the point of enforcing their deaths. Indeed, given the strict secrecy of all the material details, last week’s decision of Mr Justice Williams probably would have never been reported if not for the acute public interest and concern generated by those cases.
Many are still unaware that such cases are not exceptional in the Family Division and children’s hospitals. We only know about Charlie, Isaiah and Alfie because, in each of these cases, the parents campaigned for them on social media before the NHS brought the case to court. Many other such cases (like the one last week) are heard behind closed doors, and/or with reporting restrictions which prohibit revealing the identity of the child, parents, medics involved in the case, often the identity of the hospital itself, and all sorts of other details – all in the interests of the child’s ‘privacy and dignity’. In theory, recent reforms have given accredited journalists certain limited rights to report ‘private’ hearings in Family Division; but if all the identities and details are expressly made secret, there is not much to report. Even when a case is reported, the picture remains too opaque for people to feel confident enough to question the decision.
In law reports (which are probably just the tip of the iceberg, too), one can easily find dozens of such cases. To give a few examples which are not as well known as Alfie Evans and others:
- In An NHS Hospital Trust v GM, DK, HK (by his children's guardian) [2017] EWHC 1710 (Fam), at an urgently convened late-night ‘telephone hearing’, Mr Justice Baker ordered that it was in the best interests for life-sustaining treatment to be withdrawn from a 3-month-old boy. The baby was born healthy, but his condition deteriorated after vaccination at the age of 8 weeks. His parents, immigrants from Democratic Republic of Congo who did not speak much English, unsuccessfully opposed the NHS application.
- In Great Ormond Street Hospital for Children Foundation NHS Trust v NO & KK v MK [2017] EWHC 241 (Fam), Ms Justice Russell ordered a withdrawal of life support from an eight-months-old girl, contrary to her parents’ wishes. Despite being very ill, the evidence was that ‘When her father arrived MK recognised him, he kissed her and her eyes followed him and she smiled. The guardian observed MK was able to sit up, control her head, roll over to her side and reach for toys. MK was put in her high chair which she seemed to like… "It is acknowledged by the nurses that she is a responsive, inquisitive and smiley baby and that all the nurses enjoy making a fuss of her."’. However on balance, because the doctors predicted she would not survive for long, the Learned Judge ruled it was in her best interests to die rather than endure ‘invasive’ artificial ventilation.
- In 2016 Mrs Justice Parker authorised Guy’s and St Thomas’ NHS Foundation Trust to withdraw life support from a two-year-old boy suffering from an undiagnosed neurological disorder, contrary to his parents’ wishes.
- In NHS Trust v Baby X [2013] 1 FLR 225, Mr Justice Hedley authorised the withdrawal of life support from a one-year-old baby who suffered brain injury in a domestic accident - against his parents’ wishes.
- In A Health and Social Care Trust v M and A and L [2014] NI Fam 3 (4 April 2014), Mr Justice O’Hara authorised the withdrawal of life support from a brain-damaged five-months-old baby, contrary to his parents’ wishes.
- Many more examples of such cases are known, and probably many more still remain unknown; but the outcome is always the same. The latest and the only reported case of this nature where the parents won was An NHS Trust v MB [2006] EWHC 507 (Fam), where the parents persuaded Mr Justice Holman that an immediate death was not in the best interests of their 18-months-old child with a severe spinal muscular atrophy.
As one reviews those cases going back to 1980s and 1990s, a further insight follows. The early cases (where the legal principles were developed and entrenched) were the exact opposite of what we see nowadays. For example, in in Re B. (A Minor) (Wardship: Medical Treatment) [1981] 1 W.L.R. 1421, a child born with Down's syndrome and an intestinal blockage required an urgent life-saving operation to relieve the obstruction. The parents thought it would be kinder to allow her to die than to live as a physically and mentally handicapped person until the age of 20 or 30. The local authority applied to High Court for an order authorising the operation, appealed a refusal to the Court of Appeal, and ultimately won.
That is typical of cases in 1980s and 1990s. Doctors and judges would only intervene to save a child’s life on occasions when parents did not want to save it, or refused life-saving treatment because of irrational hopes such as believing in the miracles of Chinese medicine. No such cases have been known in recent years, however. Today, from the cases before us, it would appear that the NHS and the courts have moved from enforcing life to enforcing death.
What has changed? Logically, there may be two potential explanations. One is that new generations of parents are keener believers in sanctity of life than parents in 1980s. So, more parents tend to demand their child’s life to be saved at all costs, sometimes unreasonably; and unlike in 1980s, no parent now believes it is better for their child to die than to live a handicapped life.
An alternative explanation is that the parents remain much the same as they were, but the state’s attitude has shifted in the opposite direction – in favour of death. So the NHS and the courts are now more willing to enforce death when they think that severe illness makes a baby’s life ‘futile’. If the parents agree, that death is arranged without much ado – unlike in the 1980s, there are no pro-life voices to contradict the consensus. If the parents insist on preserving life, there will be a court case where the state will enforce the prevailing new philosophy.
I leave it to the readers to work out which of those theories sounds more plausible.
The brave campaigns fought by the parents of Charlie Gard and more recently Alfie Evans have exposed the awful reality we can no longer ignore. We can rack our brains to find some less inflammatory words to describe it, but the fact is that there is a secretive court operating in this country which routinely hands out sentences which mean certain death for ill children. What has happened to Charlie, Alfie, and all the other the victims of secretive court judgments can happen to anybody. It will continue to happen until and unless enough public pressure is put on Parliament to change the law, recognising the God-given right of parents to try and save the life of their ill child.