Currently, as I’m sure you know, assisted dying is banned in all forms throughout the British Isles and carries a potential maximum prison sentence of 14 years. Repeated attempts have been made to legalise assisted suicide, without success, but this week the Isle of Man, a self governing UK Crown dependency, has come a step closer to becoming the first part of our islands to legalise it for terminally ill and mentally competent people. And Scotland is hard on its heels with the formal introduction of a new bill to their parliament on 27 March.
discrimination
The clock is ticking …
Big week this week. Tomorrow (29 November) Westminster Parliament will debate and vote on the Assisted Dying Bill in England and Wales – or more properly The Terminally Ill Adults (End of Life) Bill.
NB. Scotland has formulated and debated its own version of the legislation for assisted dying which is currently being examined minutely by Holyrood’s Health Committee, although they will be unable to proceed to formally legalising assisted dying without authority from Westminster.
It’s an emotive and conflicting topic, and I can see arguments for both sides. But it’s by no means as straightforward as some suggest. Of course, no one wants people to die horrible painful undignified deaths, but is medically assisted dying the answer?
Proponents of the proposed new bill claim that safeguards will be stringent; in essence:
- Patients must be over 18, registered with a GP for at least 12 mths
- 2 independent doctors must be involved in the decision
- They must ensure there is no coersion or pressure, the decision is voluntary and informed and a settled wish, and the patient is fully aware of other options, eg palliative care, and that they can change their mind at any time
- An expert should assess mental capacity
- The patient must declare their wishes for death on two separate occasions, witnessed and signed
- A high court judge must approve the case
- The Chief Medical Officer must monitor and report on how legislation works in practice.
Stringent …? Ahem. That’s just how such bills were introduced in countries like Netherlands, Canada, Belgium. Within a few short years the safeguards had already been eroded. Scary statistics and reports show a huge escalation in numbers dying this way, and they include couples choosing to die together, young people with autism or anorexia, people who are depressed or lonely but otherwise well, young children. Indeed in the Netherlands plans are in process to allow the healthy elderly (>75) to be helped to die if they undergo 6 months of counselling.
And there’s another stumbling block which hasn’t had much airing. Human rights barristers and legal scholars have warned that slippage is not just likely but inevitable, because to deny other groups of people access to assisted dying would be seen to contravene the European Convention on Human Rights, and be discriminatory. So initial qualifying conditions are sure to expand here as they have done elsewhere regardless of the care taken with framing the law.
Even if all the intentions are really sincere, there are issues too with the criteria themselves. We all know medical prognoses can be wildly wrong. Who can really confidently predict death will occur within six months? Senior practitioners and experts in palliative care agree, it’s impossible until very much closer to the end than ‘months’, and research has verified this fact. Then, who is going to train doctors in this additional work? How will the medical world deal with doctors whose consciences don’t allow them to be party to this service, even referring patients on? Are there going to be enough high court judges available and willing to add this task to their existing load? Prominent legal experts have already questioned the role of the judiciary in what is essentially a medical matter.
Then there’s the whole question of viable alternatives. Hospice care is an amazing service and certainly one I personally support wholeheartedly. It focuses on living well right to the end. It’s sensitive to all aspects of a person’s well being – physical, emotional, spiritual, psychological. It includes caring for the whole family. What’s more, it is already assisting people to die humanely and compassionately. But – and it’s a colossal but – we all know that palliative care is woefully underfunded and its availability seriously limited. Only a small fraction of its total cost is paid for by the Government. In order to survive at all it must rely heavily on fundraising, and the escalating cost of living crisis has meant the generous public now have less to donate. As a consequence of this proposed new legislation, it’s feared governmental support will be reduced further if hospices deline to sign up to ending lives in line with the new bill.
Another avenue that’s under-utilised is that of Advance Directives or Living Wills, legally binding documents that state a person’s wishes for the future in certain circumstances or conditions where they might not be able to convey those choices for themselves. Withdrawing or withholding treatment is legally permissible already. However, only a small proportion of the population fill out such an expression of their wishes.
Should we then return to the pre-Shipman era where doctors could give sufficient opiates to end pain and distress, even if the double effect was to hasten death? This was generally regarded as a kind and compassionate response to intractable suffering before suspicion clouded the supposed intentions of healthcare providers.
This is by no means an exhaustive discussion of the issues, but hopefully underlines the need for huge care in deciding on this matter while there is still time. As one doctor put it: It’s a dangerous trajectory from which there can be no return.
Disability and Assisted Dying
The topic of a good death just won’t go away, will it?! But this week there’s tangible progress to report.
But of course, as ever, these attempts to change long established laws in such a sensitive and nuanced area, prompt strong opposition from some parts of the medical profession, disability and human rights groups, and religious communities, with concerns that it might put pressure on vulnerable people to end their lives for fear of being a financial, emotional, or care burden on others, compromise the ethical standards of the medical profession, and create fear and mistrust among the patient population.
So, I was fascinated by a BBC documentary, Better off Dead?, which devoted an hour to the topic on Tuesday this week (14 May, 9pm). It was written and presented by actor and disability rights activist, Liz Carr, who is herself disabled and in a wheelchair. A recent poll found that 73% of Britons support doctor-assisted suicide for the terminally ill, but Liz and many other disabled people fear their lives will be put at risk if it is legalised. She says:
Too many disabled people will have had the experience of someone, often a complete stranger, telling them, ‘if I was like you, I’d rather be dead’.
But she says with a grin, disabled people are the toughest people out there! To which her friend adds, ‘Cockroaches! Evolved for survival!’ And Liz certainly comes across as a feisty, articulate, and knowledgeable campaigner.
The pandemic cast a bright light on the inequalities in care, and the practice of ‘Do Not Resuscitate’ orders being placed on the medical notes of older or disabled patients, without their consent, also implies a low value is attributed to their lives. This documentary challenges the assumptions behind these actions, and shines a light on the many grey areas in this often one-sided debate. Seen through the eyes of those being discriminated against, it packs a hard punch.
In the course of making the programme, Liz also travelled to Canada to explore the repercussions of some of the most permissive euthanasia laws in the world, laws which include people who are disabled, not just the terminally ill. For me, seeing the illustrated information pack for children explaining what MAID (Medical Assistance in Dying) means in simple language, chilled the blood.
A palliative care specialist drew attention to the paucity of such care, and her cry to protect the vulnerable struck a particularly deep cord when we had this vivid image of assorted people with disabilities in front of us. Why don’t we hear more about the serious underfunding of this service, I wonder? Is this where we should be devoting our energies?
Even if there are to be changes in the UK law – which seems highly probable, they won’t be 100% safe. They can’t be. But the more practical question is: How safe is acceptable?
Back to my pile of books on the subject which I’m ploughing through systematically. But now with this niggle about disabled people’s perspective a much bigger alarm call.
Girl, Woman, Other
Did you know that last Thursday was ‘Super Thursday‘? – that day in the literary calendar when there’s a bonanza release of new books in time for Christmas. And this year, because of Covid-19 significantly delaying publication for authors across the board, as many as 600 new titles were released in 24 hours. 600! In one day!! SIX HUNDRED!! What hope is there for mid-or-below-mid-listers to be even noticed, huh? About as much as for a youngster with three C-grades-on-the-basis-of-teacher-assessment getting into Oxbridge, I’d say.
Seemed like a good week to home in on one title that has made the grade, big time: Girl, Woman, Other by Bernardine Evaristo which I mentioned in my post two weeks ago – co-winning the Booker Prize with Margaret Attwood‘s The Testaments. Evaristo is the first black woman ever to achieve this distinction, and she comes across at interview as a bundle of energy and zeal and determination. Positively effervescing! Given the high profile racial issues have been receiving of late, it could be argued that this book – its subject matter and its author – must surely be falling into fertile soil.
Girl, Woman, Other is Evaristo’s eighth work of fiction, which took her six years to complete. It’s written in a hybrid form that falls somewhere between prose and poetry, without capital letters or full stops for sentences, or proper paragraphs, line breaks being used to control rhythm and beat. Sound confusing? I know, and yet … it’s very readable (says this Booker Philistine with wonder in her voice). Here’s a wee peek inside …
The novel follows twelve characters, most of them black British women, moving through the world in different decades, from different backgrounds, having different experiences, making different choices. Each character has her own chapter, but their lives overlap and they are all interconnected in some way. Some of them are close – friends, relatives, lovers – others simply visit the same theatre on the same night. But common threads pervade their stories: oppression, prejudice, discrimination, racism, injustice, sisterhood. Which come in all shapes and sizes. Typically of literary books, there’s no real plot, but the characters challenge the reader to consider British attitudes and practices towards black women through the ages, and more importantly, one’s own prejudices and preconceived ideas.
The primary character and lynch-pin is probably Amma, a black lesbian playwright, now in her 50s, whose new play is being produced at the National Theatre in London. Her vignette starts the book; her after-play party almost concludes it. This part of the story is semi-autobiographical: Evaristo was co-founder, with two other women, of the Theatre of Black Women in the early 1980s. In between, we meet eleven other characters who range through frustrated teacher, abused partner, sassy teenager, nonagenarian farmer, non-binary person, adopted waif, and so much more besides.
Did it work for me? On one level, yes. I found the unusual writing style surprisingly fit for purpose. The characters come alive through their patois/pidgin, their disjointed paragraphs, their learned experiences over time. I especially enjoyed Carole, a Nigerian girl who rises above her circumstances – poverty, gang rape at 13, schooling in an establishment that specialises in producing teenage mothers and early career criminals – to acquire a degree at Oxford amongst future prime ministers and Nobel Laureates, and goes on to set the world of finance alight. And yet still finds herself overlooked and suspected. Then there’s her indomitable mother Bummi, determined to make a success of life against the odds, setting up her own very professional and superior cleaning services company, gradually accepting her daughter’s steps away from her African heritage, but herself accepted by the young English high society man Carole marries. I couldn’t help but take to the sassy teenage LaTisha, the queen of backchat, spouting her unique brand of philosophical wisdom and researched facts, all the while emoting pure insolence – a special skill of hers according to her teachers. And I really took to Hattie, 93 years old, a great great grandmother, still living alone and running the family’s 800 acre farm, outspoken about modern hifalutin ideas like mobile phones and non binary identity and central heating.
But for me, their brief biographies lacked a certain overall depth, and I’d have liked more development of their individual and collective stories. That in itself is a remarkable reflection. Booker Prize winners usually leave me shrugging my shoulders and saying, So what? This one left me wanting more. I’d call that a success.
Locked in to a fate worse than death
Tony Nicklinson is 58. He’s paralysed from the neck down, can’t speak, and his only means of communication is by moving his eyes on a screen linked to a special computer. And yet his brain is so alive and intelligent that he can hold his own in arguments with twitters and QCs alike.
Prior to the stroke, Mr Nicklinson was a handsome, successful, fun-loving man, keen on extreme sports. He was in Greece on a business trip, when he suffered a catastrophic stroke in 2005. Now he is in a locked-in state, dependent on carers for his every need, with no hope of recovery. He considers his life as ‘miserable, demeaning and undignified‘. He ‘has no privacy or dignity left‘, and he rates it a state worse than death. He’s held that view since 2007; it’s no passing whim. It’s what’s described as a ‘voluntary, clear, settled and informed wish’ in legal parlance. Watching him on The Channel 4 documentary, Let Our Dad Die, surely no one could help but sympathise with his viewpoint. Even the Greek doctor who saved his life is appalled by the consequences of his actions, although no blame attaches to him.
In March Mr Nicklinson won the right to have his case heard by the High Court. The hearing took place last week (starting 19 June). There was considerable media interest in the run up to it. Lord Falconer visited the family at home. BBC’s Fergus Walsh went to see for himself what kind of a life a locked-in patient has. Channel 4 aired its documentary. Though he could communicate with these people in his own home, Mr Nicklinson was unable to attend the hearing in person, so he stated his arguments through emails and lawyers.
His case? Simply put, he is incapable of taking his own life, so he wants the judges to rule that, when he decides he wants to die, a doctor will be immune from prosecution if he/she helps him. Mr Nicklinson fully realises that the law as it stands prohibits anyone else taking his life; that would be murder. His defence rests on the view that he is being discriminated against, because of his disability. He is looking for assistance to do what he would do for himself were he able. Furthermore he adds poignantly, why should other people be allowed to condemn him to a life of increasing misery?
His barrister described it in more ponderous legal terms: ‘a serious interference of his common law and Convention rights of autonomy and dignity’.
It’s important to note that Mr Nicklinson is not seeking a change in the law. He is seeking two declarations from the court.
1. That in the circumstances of his case – and where an order has been sought from the court in advance – ‘the common law defence of necessity would be available to a doctor who, acting out of his professional and human duty, assisted him to die‘.
2. That the current law of assisted suicide and euthanasia is incompatible with his Article 8 rights of autonomy and dignity .
The QC acting for this family argues that a prior sanction by a court ‘would provide the strongest possible safeguard against abuse’. And furthermore ‘it would also provide a safeguard against the concern, often expressed by disabled opponents of legalisation, that a change in the law would lead to a change in people’s attitudes to disabled people, who they predict would come under subtle pressure to seek an assisted death through fear of being a “burden”.’
But any loosening of the limits frightens the legal fraternity. Speaking directly to Mr Nicklinson, Lord Falconer made it perfectly clear that in his judgement, modifying the law to accommodate such an act would be ‘crossing the Rubicon’. He was himself sympathetic to assisted suicide in cases of terrible disability with no prospect of improvement, where the patient expressed a sustained wish to put an end to their misery, but ending someone else’s life is murder and that must always be unacceptable.
Pause here for a moment and ask yourself: What answer would I give to Tony Nicklinson?
Watching the documentary I wanted to weep with this man. His chagrin, his pain, were palpable. But there again, as Christina Petterson put it in The Independent,
‘… the law isn’t about how we feel. The law isn’t about how you feel if you were once healthy and fit and happy, and now aren’t. The law, as Lord Falconer said on that Dispatches, is the same for everybody. “If people want to kill themselves,” he said, it’s an “entirely private matter”, but “they can’t kill somebody else”. The law, as the disability rights campaigner Kevin Fitzpatrick also said on the programme, is meant to offer protection. “When you develop a society where some people judge that other people’s lives are not worth living,” he said, “that’s the Rubicon.”‘
There can be no happy ending for the Nicklinsons, neither Tony, nor his wife, nor his daughters. But each time a tragic case like this comes to court, and I watch the family being forced to parade their lives in front of others, to expend dwindling energy on fighting their cause, I feel there has to be an alternative.
I can, of course, see the dangers inherent in a change to the law against taking life. The consequences could be inconceivably horrible. I accept too that these extreme cases make bad laws. But the fact remains, that these exceptional circumstances do present from time to time. And they seem to cry out for special judgements.
Would it be so terrible to openly acknowledge this fact, and to relieve these families of the necessity of taking their cases to the courts? Why not constitute a sort of Ombudscommittee – a gathering of carefully selected, experienced and wise folk, representing law, medicine, religion, ethics, patients – who could quietly, rationally, compassionately, debate the very few cases which fall into this terrible legal limbo, taking guidance from others as and when they need it? Not in such a way as to drive the debate underground, not to sweep the anomalies under the carpet, but to take individual cases away from the heat and distortion of media coverage, protecting and supporting those for whom this dilemma is a lived reality not a theoretical argument.
I haven’t ever seen this idea promoted, and it’s the first time I’ve aired my own view on this. So what do you think? Would you be in favour? Or can you see some glaring reason why this would not be an acceptable way forward?
What would your solution be?