Written evidence submitted by Christian Concern (ADY0412)

“Euthanasia, in the sense of the intentional killing by act or omission of a dependent human being for his or her alleged benefit, must always be prohibited.”

Parliamentary Assembly of the Council of Europe, Resolution 1859 (2012), para. 5.

Introduction

1. Christian Concern is an organisation dedicated to promoting the gospel message and protecting the rights of others to manifest their Christian faith in the public square. For more than a decade, Christian Concern has been at the cultural forefront of supporting the right to life from conception until natural death. As an organisation, we have supported numerous individuals and families where end-of-life issues have encroached on the threshold of what rightly should be labelled euthanasia: Alfie Evans, Archie Battersbee, R.S., Baby “A” and others. We have also supported Nikki Kenward with several legal challenges, after she became an anti-euthanasia campaigner subsequent to having suffered from Guillian-Barre syndrome.

2. For years, proponents of changing the law on assisted dying have sought to paint an idyllic picture of a velvet pillow death, based on raw self-determinism, with the sufferer surrounded by family and friends. The reality, however, is almost always the opposite. Credible evidence shows that the ‘choice’ to elect for assisted suicide is thrust upon those who are vulnerable, suffering from depression or otherwise lack meaning in their life not directly related to any physical ailment they may be suffering. More times than not, these individuals feel alone or as if they are a burden on others.

3. The other dark side on euthanasia relates to the increasing number of palliative care situations that result in Court of Protection cases, culminating in a court order against the emotional pleas of the family, to end the life of the patient in question by removal of life sustaining medical treatment, and failing that, through a combination of sedatives, dehydration, and withholding of nutrition and sustenance.

(a)    Palliative Care in England and Wales: The Liverpool Pathway

A Crisis of National Interest

4. The following case summaries represent individuals and families personally supported by Christian Legal Centre, the legal arm of Christian Concern. These cases garnered national attention because the families fought back against the system which sought end-of-life measures for their loved ones. The reality is that these cases represent what is likely only a microcosm of cases which happen across the nation each year. While the facts of those cases may be different, the end is always the same, that palliative medicine in these cases has become a form of euthanasia.

Archie Battersbee[1]

5. The story of Archie Battersbee 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 head injury while at home in April and had been convalescing at Royal London Hospital in Whitechapel. Weeks into his care, the hospital brought the matter to the Court of Protection seeking an order allowing them, over Archie’s parents objection, to deliver a brain stem test to determine if he was clinically dead. Archie’s parents, Hollie Dance and Paul Battersbee, supported by the Christian Legal Centre, had challenged the hospital arguing that Archie had not been given enough time to recover and that a brain stem test is notoriously inaccurate. Despite an order from the UN Committee on the Rights of Persons with Disabilities to refrain from taking any measures which would end Archie’s life while it reviewed the substantive merits of his emergency complaint to their Committee, the Court of Appeal wilfully ignored the request and moved ahead with plans to end Archie’s life. While the Convention on the Rights of Persons with Disabilities is an unincorporated treaty in UK law, the UK has nevertheless ratified the Optional Protocol submitting itself to the Committee’s complaints’ procedure. Archie passed away on 06 August 2022.

‘Baby A’[2]

6. ‘Baby A’, as he is described in court documents, was born healthy. Eight weeks into his young life, he was found by his father to be unconscious and unresponsive. On the way to the hospital, Baby A suffered a heart attack and lost circulatory function for nearly 30 minutes. He was admitted to Queen Elizabeth Hospital, which is overseen by the Guy’s and St. Thomas’ NHS Foundation and began undergoing tests. The Trust brought the matter to the Family Division of the High Court seeking an order allowing them to remove ventilation.

7. Remarkably, ‘Baby A’, before the first hearing, and two weeks after he was declared dead by Queen Elizabeth Hospital, was seen by a nurse to breath on his own and move. During the first trial, the hospital admitted the mistake and suggested that nothing of this sort had ever happened before (an opinion that is demonstrably false as many cases of people waking after being diagnosed brain dead have been documented). Nevertheless, after numerous appeals, it was determined by the courts that it was in the best interests of ‘Baby A’ that all life sustaining care for the infant was discontinued until his inevitable death which took place in October 2022.

R.S.[3]

8. In early November 2020, RS suffered a heart attack. In the absence of blood flow, RS sustained brain damage as a result of a lack of oxygen. Within a few days of being admitted, doctors at University Hospital Plymouth NHS Trust concluded that it was in his best interests that all life sustaining care, including hydration and nutrition, be withdrawn. At the end of November, an application was made to the Court of Protection to resolve the dispute between RS’s mother and other members of his family, both in Poland and in the UK, who insisted that he be kept alive. Despite the direct intervention of the Polish government, RS was also ordered to have all life sustaining care ended until his eventual death on 27th January 2021.

Alfie Evans[4]

9. Alfie Evans was born in Liverpool on 09 May 2016. Although born healthy, Alfie suffered from an incredibly rare mitochondrial disorder and his health deteriorated. In July 2016, he had his first hospital referral. On 14 December 2016, Alfie was admitted to Alder Hay Children’s Hospital in Liverpool. His parents Tom Evans and Kate James dutifully remained at Alfie’s bedside throughout the entire ordeal.

10. In mid-December 2017, the Alder Hay NHS Trust filed an application to the Court of Protection to discontinue life sustaining care. During the hearing in early February, Tom Evans, who was 21 years old at the time and had left school at the age of 16, represented himself, while the Trust was represented by Queen’s Counsel. The result, given the disparity in legal representation and the immense difficulty in having a layman cross-examine medical experts, the Court, on 20 February 2018 wrote a medically damning report together with an end-of-life plan for Alfie.

11. A unique element of the case was that the parents were pushing out videos on social media of Alfie doing things that the judgment suggested he was incapable of doing. During this same period, the Vatican’s Bambino Gesu paediatric hospital agreed to take on the care of Alfie, while Poland offered air transport for Alfie and the family to Italy. During the course of appeals, the Italian government, in its zeal to prevent Alfie’s death, granted him Italian citizenship on 23 April 2018.

12. Despite everything, the Court of Protection nevertheless refused the parents’ wishes to remove the child to a different hospital, instead withdrawing Alfie’s ventilation on the same day with a significant police presence at the hospital.

13. What is not often discussed in this case is just how wrong the initial judgment was about Alfie’s ability to survive off ventilation, which could in part be ascribed to the disparity in legal representation at the initial hearing leading to legal factual findings which were not in accord with the actual real-life facts of the situation:

“It is unlikely that he can breathe without assistance.” (Prof Cross, para 16)

“Alfie’s inability to breathe is a consequence of the disease and not likely from the medication administered.” (Prof Haas, para. 21)

“He is completely dependent on mechanical ventilation to preserve his life.” (Dr M, para. 25)

“Alfie is one hundred per cent dependent on ventilator support.” (Dr R, primary medical expert for Alder Hey, para. 30)

“Withdrawing of treatment will immediately lead to his death....” (Prof Haas, para. 43)

“It is the ventillator that has been keeping him alive for many months, he is unable to sustain his own respiratory effort.” (Hayden J., para. 61)

14. Despite the certainty expressed by the experts and Justice Hayden of Alfie’s immediate death, Alfie Evans survived without ventilation until 28 April 2018, five days after ventilation was removed, during which time he was significantly deprived of hydration and nutrition with the goal of ending his life.

15. As with the Charlie Gard case, the courts extended the reasoning of the Supreme Court in in Aintree University Hospital NHS Trust v James [2013] UKSC 67 (para 22) that it would be “lawful to withhold or withdraw” care to also mean that it is permissible to prevent parents, vis-à-vis police force, from receiving alternative care which is on offer.

Imbalance of Power

16. 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 tax-payer funded access to top solicitors and barristers, including QC’s. They do not have in-house counsel running these cases, but hire outside counsel from leading chambers. These lawyers see litigation as adversarial. Their only 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.

17. Another perverse aspect of these cases is that the patient receives a court appointed advocate for their ‘rights’. Invariably, these advocates are fully in accord with the position of the hospitals, and cruelly, the child in question’s legal representation also becomes adversarial to the interests of the parents.

18. 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, they were then told that they would need to fill out an entirely different set of forms because of legal proceedings.

19. 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 as they have 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.

20. Proceedings before the Court of Protection 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 take the cases public with the aim of gaining a public momentum to help save their child’s life.

(b)    Assisted Dying: Comparative Survey

Belgium

21. Just this past year, the European Court of Human Rights, in a Belgian assisted dying case originally filed by the Christian Legal Centre’s Roger Kiska[5], found a violation of the Convention’s right to life provision in that the Belgian Commission responsible for ensuring the suitability of applicants for assisted suicide, a role essential to protecting the vulnerable, lacked independence and was susceptible to abuse.[6] The applicant was the son of a woman who had undergone assisted dying by lethal injection. She had suffered depression for 20 years, which was exacerbated by a recent break-up with her long-term partner. The Applicant’s mother’s psychiatrist, as well as other psychiatrists, refused to sign off on the request for assisted suicide on the grounds that they felt that she could still be helped. Eventually she approached ‘Dr D’, who referred her to a psychiatrist who eventually signed her off as meeting the criteria for assisted suicide. During this period, the Applicant’s mother gave a donation of €2500 to ‘Dr D’s’ association LEIF. He also served on the committee which approved the assisted suicide. Mr Mortier was at no point notified prior to his mother’s death that she had been approved for the life ending injection or as to when it would take place.

22. The Belgian system has become so zealous in the area of assisted dying that in 2014, if became the first country in the world to extend euthanasia to children without any age limit.[7]

Canada

23. Similar safeguarding concerns have occurred in other jurisdictions as well. In Canada, in October of this year, a psychiatrist involved in drafting a national euthanasia training curriculum testified to a parliamentary committee that the legislated safeguards for assisted dying in Canada were impotent. She further noted that the Canadian populace, and even legislators, were likely unaware of just who was qualifying for assisted suicide.[8] The reality is that in Canada people are seeking euthanasia because of credit card debt or poor housing or difficulty obtaining medical care. While they may suffer from medical conditions, the underlying reason for their desire to die relates to material or emotional matters not intimately related to their physical health.[9] There are also numerous shocking examples from Veterans Affairs Canada, where veterans who had asked for help with PSTD[10] and another a ramp for her wheelchair[11] were asked by caseworkers if they would like to apply for euthanasia.

Switzerland

24. Studies about the euthanasia regime in Switzerland have similarly nefarious outcomes. In a published study conducted between 2003-2014, researchers discovered that the crude rate of assisted suicide more than tripled during the study period. The vast majority of those who ended their lives were older, had no children and had no religious affiliation.[12] Precisely stated, the majority of applicants were elderly individuals who lacked key elements allowing for human flourishing or an otherwise meaningful life.

Netherlands

25. A 2021 study analysing euthanasia deaths in the Netherlands found that the number of euthanasia deaths in the country has consistently risen since 2006. The percentage of deaths ascribed to euthanasia in the Netherlands between 2002 and 2019 has literally doubled. Evidence suggests, the study argued, that those who attend church are less likely to wish to prematurely end their life through assisted suicide.[13] This is consistent with the aforementioned 2017 Swiss study about lack of meaning being a root cause of the desire for premature death.

26. An earlier study done in 2005 suggested that as many as 19.8% of euthanasia deaths are illegally certified as death by natural causes.[14] The United Nations Human Rights Committee has criticized the Netherlands on numerous occasions for its lack of scrutiny or safeguards relating to assisted dying applications.[15]

UK Professional Bodies

27. A 2006 Royal College of Physicians study shows the clear correlation between the desire for assisted suicide and depression. The study also reports that, with the proper medical and psychiatric treatment, more than 98% of these patients would withdraw their request for assisted suicide.[16] A more recent study was done by the RCP in 2014 with similar results. Interestingly, the majority of respondents who opposed legislating in favour of physician assisted death were those who specialised in fields closely related to end-of-life cases such as palliative medicine, oncology and geriatric medicine.[17] For the avoidance of doubt, the position of the RCP is shared by the British Medical Association (2016), the Association for Palliative Medicine of Great Britain (2015), and the Royal College of Practitioners (2014).[18]

Conclusion

28. In many ways, the words compassion and dignity have been weaponised against the most vulnerable segments of society to justify assisted suicide. It is expedient and alleviates our collective consciences when it is said that it is in someone’s best interest to die. Fostering real dignity and compassion however takes work. It requires helping the suffering enjoy meaning in their lives and giving them a sense of worth.

29. Jurisdictions which have legalised assisted dying have several things in common. They all have issues with underregulated instances of assisted dying and in all of them, the rate of increase for assisted death keeps on growing. Studies have also shown that where meaning exists, such as having children or church attendance, the desire to die by unnatural means decreases. The government should therefore be focusing on enacting policies which will enrich people’s lives, not end them.

30. Lastly, reform is needed in the area of palliative care. The occurrence of nationally publicised end-of-life cases since Charlie Gard has become far too commonplace.  A system which prevents families, especially those with young children, from obtaining alternative care when on offer is draconian and unnecessary. Cases like Alfie Evans,  R.S. and Archie Battersbee have irrevocably damaged Great Britain’s reputation on the international stage. As 2 Samuel 22:26 proclaims, to the merciful, God will show Himself merciful. The Liverpool pathway and the broken families it has left in its wake needs to be brought to an end.

Jan 2023