The sad death on Tuesday evening of the young 19-year-old girl who can only be referred to as ST has once again highlighted the agonising dilemmas surrounding end-of-life care. The teenager – who has been suffering from a very rare form of mitochondrial depletion syndrome (MDS) for a number of years – died after suffering a cardiac arrest in hospital.
At the time of writing this article a draconian Reporting Restrictions gagging order is in place which prevents any media from publishing details which might allow the person concerned, her family, the hospital or its staff from being identified. Hence, despite the agony of her grieving family this week, we can only discuss this as the ST case.
The previously outgoing 19-year-old – who enjoyed Love Island and coffee with friends and was studying for her A Levels – had lived a relatively independent life, coping with her condition and surviving against the odds despite doctors telling her regularly that she could die. Over recent months the girl, her family and their legal representatives have been involved in a heart-wrenching legal battle with the NHS Trust which placed her in palliative care after her MDS was made worse by contracting Covid in August last year, resulting in her hospitalisation and reliance on a ventilator, feeding tube and regular dialysis. She received a tracheostomy permitting her to speak, but also wrote notes with a Smartbox, similar to an iPad, which aids those with limited speech.
Matters took a more serious turn when it became evident that doctors were considering the removal of her vital life support equipment, having believed her to be in the final stages of decline. Their opinion was that the equipment should be switched off, and ST allowed to die with “appropriate” palliative support. They said this was the “kindest option” as she was “actively dying”.
ST – a committed Christian – disagreed with this, and expressed her strong wish to stay alive. She also wanted to be taken to north America, where clinical trials are due to begin in November of a new, experimental treatment for MDS.
Referring to the palliative care proposal, ST replied: “I do not want this and want to try the treatment being offered abroad. It might only be a small chance, but it is my only chance.”
Her parents told the Daily Mail that their daughter “firmly believed that life is the most precious gift from God.
“Every family faced with such a challenge and tragedy should have the opportunity to leave no stone unturned when trying to save the life of their child,” they said.
Around £1.5 million – not a difficult sum – would have been needed to send ST to Canada for the trials, but before the family could do anything more, the hospital took them to court to gain the right to end their daughter’s life and, having won the case, also managed to retain a previously enforced total press blackout on identifying any parties involved.
ST’s brother and father were present in court to hear the decision, and most tragically – ST herself had joined the hearing from her hospital bed.
The key points of the hospital’s Trust’s case were as confusing as they were disturbing, and this case was unusual in that, unlike most such ‘end-of-life’ cases, the patient was a fully conscious adult well able to convey her wishes.
In court there was a general acceptance that ST had consistently outlived or confounded their predictions of her demise, and that such medical predictions could be infallible. No-one could dispute that ST had expressed a clear desire to remain alive and have her treatment continue. This left a gaping hole in the proposition that ST was “actively dying”, so the Trust opted for an argument that ST’s desire to live in the face of almost certain death placed her ‘in denial’ of the reality of her situation. If this was the case then she could be regarded as being incapable of making a rational judgement about her treatment, and the hospital could proceed as it saw fit.
Despite eloquent and powerful representations from ST’s legal team, which included leading Catholic human rights barrister Bruno Quintavalle, the Honourable Mrs Justice Roberts concluded that: “I find on the balance of probabilities that ST’s complete inability to accept the medical reality of her position, or to contemplate the possibility that her doctors may be giving her accurate information, is likely to be the result of an impairment of, or a disturbance in the functioning of, her mind or brain … It is not necessary for me to seek to further define the nature of that impairment. I am satisfied that it exists and that it operates so as to render her unable to make a decision for herself in relation to her future medical treatment.”
This decision was devastating to all concerned, and one can only shudder at what it meant to ST herself, as she listened to what was effectively her death warrant being read out.
Hopefully the world will soon be able to put as name to ST. Reporting Restriction orders rarely last very long when there’s an overwhelming public interest. No doubt with her death the Daily Mail will make the strongest possible representations to the courts to have this brave young woman named and memorialised, though the hospital and its staff will also resist firmly for fear of reprisals and negative publicity. For the sake of her family I hope we can find out who she was, as it seems in this day and age that we mustn’t let anyone die with such anonymity.
Beyond that, there are fundamental questions – and worries – raised by this tragedy.
It’s now more than 20 years since the landmark Tony Bland case, which changed forever the default position on patient care.
Anthony David Bland (21st September 1970 – 3rd March 1993) was an 18-year-old Liverpool FC supporter of Liverpool F.C. who suffered severe brain damage during the 1989 Hillbrorough disaster that left him in a persistent vegetative, though he was still breathing on his own until his death. He is generally recorded as the 96thvictim of the tragedy. With no sign of meaningful brain activity after four years the hospital, with the support of his parents, applied for and obtained a court order allowing him to “die with dignity”.
Prior to the Bland judgement, any doctor who deliberately withdrew life-prolonging treatment under any circumstances, and where the patient subsequently died, could have been charged with murder.
The Bland case was perhaps the first public test of attitudes to the continuing care of severely ill patients, and it also struck at the core of Catholic views on the sanctity of life – which said that all human life was sacrosanct, but equally need not always be sustained and extended if the means was wholly un-natural. Such theological grey areas are often typical of Catholic teaching and – applied to the Bland case – there were no obvious answers. At one extreme the firebrand Scottish pro-life campaigner Fr James Morrow took direct protest action to save Bland’s life, and even tried to prosecute Bland’s doctor. Conversely, Bishop David Konstant (in whose diocese the Bland family lived) controversially declined to support Fr Morrow and the efforts to keep Bland alive – agreeing with the medical team and Tony’s family that there was no sign of meaningful life and he should be allowed to ‘died with dignity’.
Two decades and many subsequent cases on, we have unquestionably arrived at a default ‘euthanasia-by-omission’ position where hospitals and doctors now have full legal powers to make ‘end-of-life’ judgements.
That may be bad enough, but now the ST case enables that even when a fully conscious, objecting adult makes it absolutely clear they want treatment and support to continue. Furthermore, this can be paired with comprehensive reporting restrictions that seek to prevent the general public from knowing pretty much anything about such judgements.
Frankly, the combination of a National Health Service where doctors can decide whether a person lives or dies regardless of their patient’s wishes, combined with the power to prevent knowledge of their decisions becoming public, is a state of affairs that everyone should be profoundly worried about, and Catholics in particular.
Just this morning, the Vatican’s new Prefect of the Dicastery for the Doctrine of the Faith, Archbishop Victor Manuel Fernández, has stated that he wants a fundamental change in the presentation of Catholic theology, one that he says places ‘an emphasis on engaging contemporary culture and real-life experiences’. The archbishop is known to favour complex theological concerns being presented in a way that can be understood as widely as possible without ambiguity or unnecessary nuances.
Complex and humanely painful issues such as the continuation of end-of-life care are a case in point. It’s all very well to say that the Church teaches on the one hand that all human life at all stages is sacrosanct, and at the same time to say that a human life must not always be extended unnaturally, but you do need to define in some way what you mean by ‘not always’ and ‘unaturally’. The tendency to make theologically complex statements and leave it to the masses to work how it works in practice offers no useful service to the laity, nor to the teachings of the Church itself, and invariably leads to a lot of confusion and heartache.
At present we Catholics seem to have no trouble defining very precisely and unambiguously what constitutes a ‘start-of-life termination’, but we’re woefully short on a definition for what constitutes an ‘end-of-life termination’. Two decades on from the Bland case, our failure to reach a defining theological position is letting incredibly dangerous and damaging legislation roll onto the books, and it’s also doing a profound disservice to our neighbour – who in dark places so often looks to the Church to provide support, comfort – and meaningful answers.
Joseph Kelly is a Catholic publisher and theologian