dignity
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.
Reflections from the sofa
It’s all very well to theorise about how we would act in certain circumstances from a safe distance, but real life in all its chaos can feel very different from the calm scenarios of our speculations. And in that context I’ve experienced some very sobering realisations this past few weeks in relation to medical ethics. Don’t get me wrong, I’m not feeling maudlin or morbid; rather I have an unusual amount of quiet time on my hands to reflect at the moment. So I thought I’d share some of my reflections with you to illustrate my initial statement.
There’s a lot to be said for simply accepting whatever life throws at you and dealing with it as it happens. It also saves a lot of angst if you just go along with whatever doctors say, take whatever treatment they advise, leave all the thinking to other people. But I’ve spent decades pondering ethical questions and challenging received wisdom, and my brain is now hard-wired to do so. So, let me illustrate where I’ve been going with this.
My own mortality has been brought into sharp relief since my heart started doing crazy things and I’ve been in and out of hospitals and GP surgeries. Lying on the floor waiting for the next heartbeat, watching a monitor recording 200 beats a minute, feeling the world receding, concentrates the mind wonderfully.
I’ve been working in the field of medical ethics for decades so not surprisingly I’ve given due attention to my end-of-life wishes. My ideal? To die with dignity, free from suffering, in full possession of my mental faculties. Nothing unique there, then. If things go pear-shaped, I’d rather not prolong a life of disability, lack of cognitive function, or suffering. Fair enough. Given that I’m entirely reliant on medicine to stay alive, I even have the wherewithal at my disposal to effect my own death should I wish to, without breaking any laws or implicating anyone else, or indeed doing anything other than refusing treatment.
I’ve duly prepared myself and others: I’ve thought (ad nauseam) about my own tolerances and limits. I’ve written an advanced directive – and even acquired a medical signature for it. I’ve had the conversation (many) with my nearest and dearest. All textbook stuff so far.
But real life is full of fine lines and unknowns which make actually carrying out those clear wishes problematic. I won’t bore you with a comprehensive treatise on how far short of the textbook reality falls in my own case; merely give a couple of examples by way of illustration.
I have options. I could simply ignore all my current symptoms of dizziness, nausea, blackouts, arrhythmia, get into the car and drive. I could keep doing strenuous things until my heart just gives up. Either, in my judgement, would be totally irresponsible. And my family and friends and doctors and lawyers would certainly have plenty to say – legitimately – about such a reaction. No, I have little choice at this moment but to listen to my body and accept that all is not well, and I believe I have a moral duty to take certain actions in recognition of that.
My heart is not maintaining a steady rhythm. One of the consequences of this is that I’m currently at greatly increased risk of a stroke. But nobody knows how bad such a stroke might/will be. If I suddenly had one, would I want to be resuscitated or treated? Well, it would depend on how severe the consequences of the stroke would be, and nobody could predict that at the time of the stroke. By the time anyone does know, the decision to treat has already been made … hmmmm. And it could be that by then I’m no longer mentally competent to make a decision for myself … ahhhh. How quickly and easily events spiral out of control.
At the moment we don’t know what’s causing the problems; I’m scheduled for more tests. Once we have a better idea of the underlying diagnosis, other questions will surface. They’re contingent on the facts: cause, statistics, outcomes, possible treatments, side-effects, risks-benefits ratios, etc etc. My medical team can supply the information, but I’m the one who must assess what I want. No one can force me to have treatment against my wishes. But my tolerances, my wishes, might not square with those of my medical advisers who have their own professional and personal standards and ethics, although it has to be noted, the consequences of what they do to me will not be borne by them. My assessments might not match those of my family who could be left to cope with my disability or death or worse. For their sakes I might feel an obligation to choose something different from what I might wish for myself alone.
See what I mean? We might think we have it all buttoned up, but life is unpredictable and no man is an island.
I’ve seen up close and personal the effect of heart problems like mine – both instant death from a heart attack (my father), and the slow decline of repeated strokes, vascular dementia, prolonged total dependency (my mother) – so I’m not naive. I know what I would choose for myself; my family do too, but it’s not at all clear to me at the moment that I shall actually be able to put my wishes into effect. I rehearsed these dilemmas with Adam O’Neill when I walked alongside him as he died from Motor Neurone Disease six or seven years ago. I’m rehearsing them again now in real life for myself. It’s an interesting occupation.
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?