Andrea Williams comments on the case of 12-year-old Archie Battersbee, whose case has gone to the Court of Appeal after a High Court ruling gave doctors permission to turn off his life support.
“See that you do not despise one of these little ones. For I tell you that their angels in heaven always see the face of my Father in heaven.”
Matthew 18:10, NIV
“While Jesus was still speaking, some people came from the house of Jairus, the synagogue leader. ‘Your daughter is dead,’ they said. ‘Why bother the teacher anymore?’ Overhearing what they said, Jesus told him, ‘Don’t be afraid; just believe.’”
Mark 5:35-36, NIV
The story of Archie Battersbee has captured the hearts and garnered the prayers of millions of people around Britain and the world. Archie, a 12-year-old boy from south-east London, suffered a serious brain injury while at home on 7 April and has been convalescing at Royal London Hospital in Whitechapel. The very first night, the doctors told the family he was not going to survive another 24 hours. Two days on, the doctors said he was ‘brain-dead’ and invited the family to discuss organ donation. Yet, over three months later, Archie is still alive, and in one sense, kicking. The ongoing legal battle for his life has highlighted serious flaws in the UK’s ‘end of life’ practices, and he has given some of the top legal minds in the country much to think and argue about.
The doctors were pessimistic, but Archie’s parents refused to give up on him – even after the hospital took them to court. Supported by the Christian Legal Centre, Archie’s parents, Hollie Dance and Paul Battersbee, mobilised some of the finest legal and medical minds to help them defend the case. Having initially lost in the High Court, they became the first family in recorded legal history to win an appeal to the Court of Appeal in a case of this kind. The case was sent for a re-trial, which again went against the parents last Friday; the Court of Appeal has now reserved judgment until Monday 25 July.
The case has focused on two issues of fundamental importance to the sanctity of life and the protection of the vulnerable. First, the controversial concept of ‘brain death’. Second, the everlasting ethical dispute between those who believe in sanctity of life until its natural end, in God’s way, in God’s time – and those who believe that ‘dignity’ requires a choreographed death, be that euthanasia, assisted suicide, or a planned withdrawal of life support.
Since time immemorial, death was identified, by doctors and laymen alike, with a complete and irreversible absence of heartbeat and blood circulation.
The theory of ‘death by neurological criteria’ or ‘brain death’ only gained currency in the 20th century. ‘Brain stem death’ theory became part of mainstream medical thought due to the influential works of Christopher Agamemnon Pallis (1923-2005), a consultant neurologist who spent much of his career in a hospital that was a transplant centre. Being able to diagnose death while the heart is still beating is an obvious practical problem in organ transplantation. Pallis acknowledged that “the criteria used to diagnose death on neurological grounds has to be rooted in an explicitly formulated philosophical concept of death and, moreover, one that would be widely accepted in a multicultural society.” His own philosophy was militantly atheist – Pallis had a secret alter ego as ‘Martin Grainger’, a radical left-wing author and an activist of the Revolutionary Communist Party.
‘Brain stem death’ is defined as an irreversible loss of consciousness and of the ability to breathe independently. It is diagnosed by a series of simple bedside tests, such as shining bright light into the patient’s eye, pouring ice-cold water into the patient’s ear, etc. The final test in the series involves removing the patient from the ventilator, thereby trying to elicit spontaneous breathing (the apnoea test). Defending this definition of death, Pallis wrote: “‘To live is to function: that is all there is to living,’ Oliver Wendell Holmes said. The argument is about permanence more than about pathology. And here the evidence can only be empirical. The first patient to speak again after having shown unequivocal evidence of a dead brain stem will create as great a sensation as if the decapitated head of Louix XVI had started berating his executioners.”
This neurological definition of death has now been written into the law in some countries. The United Kingdom has no statutory definition of death, nor any settled definition in common law. However, the Academy of Medical Royal Colleges has accepted the ‘brain stem death’ as real death in its Code of Practice for the Diagnosis and Confirmation of Death 2008. In two or three first-instance decisions, courts found people to be dead based on the outcome of the brain-stem test, most recently in Manchester University NHS Foundation Trust v Namiq  EWHC 5 (Fam), from which the Court of Appeal refused permission to appeal. There is still no binding precedent, from the Supreme Court or from the Court of Appeal, which would have settled the question conclusively.
It has been, therefore, an uphill battle for Archie’s family to re-open this issue in Court, when the Hospital sought to carry out the test on Archie so as to declare him dead. With the help of the Christian Legal Centre, Archie’s family enlisted the help of an eminent neurological expert and the leading critic of the concept of brain death in the US, Professor Alan D. Shewmon. His evidence to the Court was clear, well documented, not contradicted by any other expert, and could not be challenged in cross-examination. Professor Shewmon proved that:
- The apnoea test carries a significant, ethically unacceptable risk of causing the very condition it is meant to diagnose – killing the patient by starving his brain of oxygen.
- There are a number of documented cases where patients diagnosed as brain-dead subsequently recovered – Pallis’s hyperbole about decapitated head speaking came true more than once.
- The documented cases are undoubtedly just the tip of the iceberg, because most patients mistakenly diagnosed as brain-dead would soon die either from removal of life support or when their organs are removed for transplantation.
- Modern radiological tests, such as CT or MR angiography, even if used instead of or in addition to the bed-side brain-stem tests, do not enable a more accurate diagnosis, because they are unable to distinguish no blood flow to the brain from low blood flow. Low blood flow would be consistent with a condition known as global ischemic penumbra, which is potentially reversible.
Despite that evidence, Mrs Justice Arbuthnot authorised the brain-stem test to be carried out on Archie in May. However, the external doctors enlisted for that task began from doing preliminary tests meant to exclude potentially reversible causes of unresponsiveness, such as a spinal cord damage. They discovered such damage was a distinct possibility, and therefore that the brain stem test could not be carried out. Nonetheless, the Hospital’s lawyers then persuaded Mrs Justice Arbuthnot to declare Archie brain-dead “on the balance of probabilities,” based on an MRI scan and other radiological tests, despite Dr Shewmon’s warning. The ‘time of death’ was recorded as 12 noon on 31 May 2022, being the date of the latest MRI scan.
The family appealed on a number of grounds. Three of those grounds have much wider significance. Firstly, the family’s lawyers argued that the correct standard of proof for determining death was ‘beyond reasonable doubt’, not ‘the balance of probabilities’. The second ground was that the common law definition of death only includes the traditional cardiac death, but not ‘brain death’. Thirdly, they relied on Archie’s freedom of thought, conscience and religion under Article 9 of the European Convention on Human Rights to argue that he was entitled to be treated as dead or alive in accordance with his own and his family’s religious or philosophical views of death.
The Court of Appeal granted permission on all these grounds.
Ultimately, the Court of Appeal decided it was unnecessary to determine each of the grounds, because no doctor had diagnosed Archie as dead, and the Mrs Justice Arbuthnot had no competence to give her own diagnosis. The medical protocol for diagnosing death, right or wrong, had not been followed. Archie therefore was deemed alive again, and the case had to be re-tried on that basis.
However, the fact that permission to appeal had been granted has immense wider significance. The theory of ‘brain stem death’ is now clearly disputable in UK courts. A challenge to that theory is no longer a legal heresy. It is now a matter of time before that whole concept is questioned in another case by a family who disagrees with it, and debated at the Court of Appeal level and perhaps at a higher level. The Courts and/or Parliament will at last have to grapple with the scientific controversy and grapple with a proper legal definition of death.
Natural death vs planned death
In the meantime, Archie’s case was sent to a re-trial before a different judge, Mr Justice Hayden. Now that Archie was acknowledged to be alive, the issue before the Court changed. The medical evidence is that his condition is extremely serious and, if nothing is done, he is likely to deteriorate and die soon. When he was just admitted to Royal London Hospital, his death was said to be a matter of hours or at best days. Three months later, it became, in the doctors’ opinion, a matter of weeks or at best months.
The family wants to wait and see what happens, praying for a miracle, but being prepared for the worst. That position is one that is wholly unacceptable to the NHS and to the Courts. This is not because anyone else needs his bed in the intensive care unit – any hint that saving NHS resources may be part of the consideration in any way has been categorically denied by the doctors and by the Court. Yet, the NHS Trust’s lawyers have been pressing for the case to be decided with extreme urgency – racing against the danger of a sudden, ‘uncontrolled’, ‘unplanned’ death. The argument is that it is in Archie’s best interests, and necessary to ‘protect his dignity’, to ensure that his death is properly ‘planned’, and happens at an appointed time, when an appointed doctor (whose name must be strictly anonymised by the Court, with a threat of imprisonment for anyone who attempts to disclose the doctor’s identity) removes the ventilator tube from his throat, and he dies surrounded by his family.
It is surprising that this argument is even made in court in a country where euthanasia and assisted suicide are still illegal. Removing life support may sometimes be the right decision. But the logic being used by the lawyers for the hospital and state agencies in Archie’s case is identical to euthanasia advocates – anything less than a controlled and planned death, is an assault on human dignity. However, the trial has shown that the idea of a ‘planned death’ being an obvious necessity of every patient’s dignity and best interests appears to be the new orthodoxy. Giving evidence in Court, Archie’s treating consultant intensivist (who cannot be identified because of the reporting restrictions imposed by the Court) rejected the idea of a natural death as “unpredictable, chaotic in nature, and undignified.”
Ian Wise QC cross-examined the doctor on behalf of Archie’s parents, and suggested to her that: “very many people in intensive care die an unplanned death.”
The doctor replied: “Unplanned deaths do happen, but they are actually quite rare. That is not something we aspire to – when we can, we much prefer controlled final few moments.
“We always try our very best, to make that death as dignified as possible, as controlled as we can.”
She added: “The manner in which withdrawal takes place is very well thought through.
“The reason why we generally remove endocranial tube and stop ventilation is that this manner of death is a predictable one, it takes at most a few hours.”
The parents reject that philosophy, and their uncontradicted evidence is that Archie rejects it, too. The family’s view is that waiting for a natural death “in God’s time, in God’s way” is kinder and more dignified that any choreographed death the Hospital offers. Yet, Mr Justice Hayden echoed the doctors’ sentiments when he asked Archie’s mother Hollie “I wonder if something which is planned might offer [Archie] greater dignity. And you might have a more positive experience. Can you see?”
“Nothing can be more traumatic than seeing a planned death,” replied Hollie.
Summing up for the parents’ Ian Wise QC explained the difficulty of the hospital, or anyone else imposing their view of dignity on the family: “We have heard from doctors and from the Guardian about what they think is in Archie’s best interests. Their views are very welcome and very interesting, but those views do not anchor themselves in the fundamental common law principle of sanctity of life.
“Dignity can be seen by one person very differently from the other – it is what the beholder sees. In a case where issues are so profound, a finger in the wind is not good enough.
“Surely the views of Archie and his father and mother should carry more weight than the views of those who are, with respect, only passing through Archie’s life.”
In the judgment released last Friday, Mr Justice Hayden rejected those arguments. He acknowledged Archie’s own clearly expressed wish to be kept on life support if he ever finds himself in a situation of this kind; but found that this was still not in Archie’s best interests. According to Mr Justice Hayden, Archie’s dignity requires life support to be removed immediately, despite the opposition of his family.
We await the next decision from the Court of Appeal next week. But Hollie and Paul intend to keep fighting for Archie’s life.
Parents need support
Alfie Evans, Isaiah Haastrup, Zainab Abbassi, Charlie Gard… these are all highly publicised cases that came before Archie’s case, where hospitals and children’s guardians have gone against the express wishes of parents to continue care with the end result being court orders which directly led to the death of each of these children.
While these cases are always emotional and technically difficult, at the end of the day, hospitals should wait until parents are ready. One of the most frustrating elements of each of these cases, and one of the reasons these cases have captured so many hearts, is that each of these families had legitimate reasons why care should have continued. Archie’s case is no different.
Should it be the case that Archie ultimately will not survive, the process of doing everything that can be done on his behalf, helps the parents come to terms with the reality of the loss. There is tremendous life-long pain, helplessness and anguish associated with the wound of losing a child when you think he still had a fighting chance. In a compassionate society that respects the value of life and family, we should be doing everything we can in these situations.
This is not to question the compassion or motives of hospital staff. The reality is however, those in an environment with such profound tragedy and loss as palliative care tends to be, even experts can be conditioned to always live with, expect and rationalise the worst case scenario. This unconscious bias, formed from cumulative negative experiences, can never be allowed to trump the specific circumstances and hope of an individual family.
Imbalance of power
One of the defining features of end-of-life cases is the immense and insurmountable balance of power between the hospital and the families involved. The hospitals have taxpayer funded access to top solicitors and barristers, including QCs. They do not have in-house counsel running these cases, but hire outside counsel from leading chambers. These lawyers see litigation as adversarial. Their goal in the end is obtaining the outcome sought for by their clients. It is not doing what is in the best interests of the patient, but rather doing what they are professionally required to do, which is act in the interests of their clients.
Another perverse aspect of these cases is that the patient receives a court-appointed advocate for his ‘rights’. Invariably, these advocates support the position of the hospitals, and brutally, the child in question’s legal representation also becomes adversarial to the interests of the parents.
Equally troubling is the pace at which these cases run. The hospitals, in anticipation of filing their case, can prepare all of their evidence and testimony in advance. The family, often with no legal knowledge and limited funds, are left scrambling to fight these cases on an overly aggressive timescale. Moreover, hospitals are not always forthcoming with parents in their requests to provide the pertinent medical records needed for litigation. In Archie’s case, for example, the family, after filling out and re-filling out forms for 3 weeks to access Archie’s records, were then told that they would need to fill out an entirely different set of forms because of legal proceedings.
What many members of the public are not aware of is that at this first stage of proceedings, the factual findings of the judge are essentially set in stone. Precisely stated, whereas parents tend to be much more ready for appeals, having had time to understand the system a little bit better and digest what was happening, by that time it will be too late. Appeals are based on challenging procedure and points of law. The threshold for challenging a factual finding by a lower court is an incredibly high bar.
Proceedings before the Family Division of the High Court also tend to be highly secretive. Strict reporting restrictions are often commonplace for end-of-life cases, especially when children are involved. When these cases become the subject of national and international media scrutiny, it is only because the parents are zealous enough to make the cases public with the aim of gaining a public momentum to help save their child’s life.
Media coverage is often vital in these cases. Public scrutiny and mass public support do affect cases. Journalism often shines a bright light in an area of law where there is a distinct lack of transparency.
Having the appropriate legal support is also key, especially at the earliest stage possible. As these cases run at a pace not familiar to most practitioners and introduce novel areas of law and bioethics, having experienced representatives who understand what is at stake and the rules of engagement, is key.
The Christian Legal Centre has been privileged to support several such cases and the families involved. The cases are not easy. We operate under extreme time and resource pressure. We care about the families. We also care that how the law defines death and we do not want to see it weakened in any way.
We have worked alongside expert lawyers who have dedicated significant portions of their careers in this area of law and for these principles. Our team has often provided 24-hour support for the families for weeks at a time. These cases require non-stop attention from the moment proceedings are commenced until the final outcome. They feature twists and turns, and appeal upon appeal. Anything less than true dedication would be a disservice to the families involved.
Systematic reform is needed
What Archie’s case has shown is that systematic reform is needed to protect the vulnerable and their families in end-of-life matters. The lives of Archie, Isaiah, Zainab, Alfie and Charlie have value. Their legacies need to be honoured.
Legislation must be passed reforming the system.
How many more times will the nation be witness to such tragic dramas as these cases represent?,
Archie’s case stands in the gap. The precedent his case sets can go an incredibly long way to fixing a system which has no room for error.
Please keep Archie, and his parents Hollie and Paul, in your prayers.
Find out more about Archie Battersbee