What is the current state of the law?
The current position, in which the DPP has not decided to prosecute any of the 40+cases which have arisen since 2009, is not entirely satisfactory but the answer to that dissatisfaction does not therefore lie in a change in law to introduce assisted suicide/euthanasia.
It is difficult to see any better compromise, when assured of the DPP’s diligence in examining individual cases. We take that assurance seriously and regard this as the best of a bad situation. For the moment, we take a little comfort (but not completely) when someone of such stature is charged with deciding whether to prosecute, whether prosecution is in the public interest. We might still feel the need to disagree with what is and what isn’t ‘in the public interest’.
However, the press for a change in the law began with the desire to protect those who assisted a suicide from prosecution.
So now, when the threat of prosecution has all but been removed, it is important to ask: why do people still campaign for this change in the law? I think it’s worth pondering over some possible answers to that question, and not simply accepting at face value that it must be because the threat remains – it doesn’t in reality.
‘What do some people get out of continuing their campaign?’ is one question that keeps coming back to me. I leave you to make up your own minds on that question.
- What principles should the law be espousing, and is existing law fit for purpose in this context?
The law is there to protect people from harm; that’s the principle on which existing law is premised and should continue to be so. Its purpose is to make us pause in each individual case. The pause is critical – makes us take at least a moment to think ‘is it really right to assist this person’s suicide?’ – because each one is an individual, each case is different, and in that sense the law is roughly ‘fit for purpose’.
The biggest problem with introducing any law to allow assisted suicide/euthanasia is its generality – we can’t escape that – a law will cover everybody. That’s what laws do and no matter how much sympathy we feel for individual poignant cases we cannot generate a law from that sympathy.
Disabled and terminally ill people reject the view that our lives are a tragic burden. Not one organisation of or for disabled and terminally ill people has campaigned for the changes proposed. This includes organisations that advocate on behalf of people with multiple sclerosis and motor neurone disease.
We won’t feed the stereotype that our lives are so tragic, burdensome and intolerable that we must all want to die. Suffering may be a part of the framework of our lives but we value those lives in ways that give us the will to rise above such views.
But we recognise that many are encouraged to fall into the fear and lazy fatalism of low expectations of their disabled lives, especially when such views are held by loved ones. Whatever a law espouses, it should not be anything to add to that vulnerability, driven by lack of services, fear, and even at times exploitation.
Discrimination
- Are there any circumstances in which the existing law could be considered discriminatory against certain people (such as those with conditions preventing them from committing suicide without assistance)?
‘Discrimination’ is an interesting word here and much misused in this debate. If there is no service for anyone, then there can be no discrimination. If there are no disabled toilets in any church in the country built before say the middle of the 20th century, there is no discrimination against disabled people attending services in 16th century churches. I just give this as an example. The service of an accessible toilet is not given to others, to anyone, and therefore is not be denied to disabled people based on their disability, which is where discrimination comes in.
Some disabled people argue that other disabled people are discriminated against because they cannot physically take their own lives. We cannot call that discrimination – people not physically impaired in this way are not denying others who are the capacity to take their own lives: the disease does that. We might call this the cruel discrimination of some diseases; in fact we are more likely to call it indiscriminate, ‘random’, but either way that is a different sense of ‘discrimination’. So in the absence of any assisted suicide/euthanasia service in this country, there is no sense inspeaking of discrimination against more severely impaired people.
Interestingly, the Falconer ‘commission’ argued that only people who could take their lives by their own hand should be covered by any change in the law.
Still, we know a small number of people want assistance to commit suicide – even the lobby for assisted suicide/euthanasia admit that the number of people who cannot die by their own hand, and want to, is vanishingly small (around a 250th of 1% of those dying each year).
And if we do wish to talk about discrimination against them, we need then to also talk about discrimination which arises against the huge number of people that will arrive with a law to introduce assisted suicide/euthanasia.
Institutionalising euthanasia means we deem some people as appropriate subjects for elimination – others are deemed worthy of preserving. That is discrimination, on a far wider far more damaging scale, affecting thousands, tens of thousands and maybe even greater numbers over time. I am no fan of utilitarian reasoning, but I would find it hard to justify risking thousands of lives against 20 or so each year, especially when I believe there is another way.
But let’s stick with the harm for a moment: older people are being routinely denied cancer treatments and with half of all cancers expected to appear in those over 70 years of age that is a serious problem of discrimination (see macmillan.org.uk).
Howard Martin a former GP who worked alongside Harold Shipman for a time, admitted killing three patients by overdose ‘because it was their time to die’. That is a fatal form of discrimination.
The idea that disabled people, including those who do not have long to live, are ‘better off dead’, is not new. And some disabled people subscribe to this themselves but often do so from a place of grief.
The law as it exists does not discriminate against anyone. The proposed changes will bring that discrimination against many thousands of disabled and terminally ill people with it. The licence to take such views, and to kill as a result, is the discrimination that will inevitably arrive with such a law.
- Do the Commission’s recommendations go far enough in dealing with the issues that arise from a loss of mental capacity, for example, due to Alzheimer’s disease?
This was not a commission – it was a group of privately funded self-proclaimed supporters of assisted suicide/euthanasia. But even so the report it produced is full of evidence as to why a law would not be a good idea.
At the very least however, they have managed to be clear that a change to the law of murder is not on the cards: therefore Tony Nicklinson’s hopes were dashed and he is pursuing his case in the courts. They were clear too about the dangers of opening the door on euthanasia for people who do not have full decision-making capacity. In those two ways Falconer’s report agrees with us, and I think it is instructive to ask why.
The loss of capacity is a very complex issue especially in Alzheimer’s and other forms of dementia when lucidity may still appear if more and more fleetingly as disease progresses. But we speak as though it is easy to imagine what ‘loss of capacity’ means. It is not. And it does not always mean that someone has dementia – many people lose the capacity to fight against the lack of support from family, and that can be a major factor in their decision to die, as the Falconer report also shows.
Just as with prognosis of death, timing of when ‘capacity will be lost’, is not scientific and absolute. No-one can say this terminally ill person will die at 3.42 to day or on June 23rd next. No-one can say that in a month this person will have absolutely no power to make decisions. Even someone in an advanced state of dementia can state clearly their desire to brush their teeth.
Medicine, as one doctor has pointed out, is a ‘probabilistic art’ and even just one example can show this – a young man with MS in S Swales given 3 months to live in 2002, and still living at home, a respected member of his village community in 2012.
So it’s not just mental, intellectual capacity that’s at stake here: there is emotional capacity, and social capacity to enjoy life. None of them exists in isolation, although in end-of-life situations the medical ones are taken as primary. And yet none of them can be ‘measured’ despite the claims made about quality of life measurements – and certainly not with any accuracy. All the factors that can drive someone to feel worthless can be considered as ‘capacity’ but can also be reversed, and the vast majority of people change their minds about wanting to die in those better circumstances even when they’re already terminally ill.
- How would a change in the law be likely to affect public attitudes and values towards disabled or otherwise vulnerable people?
It would be catastrophic…. it would place a new and invidious pressure on disabled and terminally ill people to ‘do right’ by their families and the state by dying now. It would legalise, legitimise and institutionalise the lazy thinking that goes with ‘you wouldn’t do this to a dog’ and worse, it will be acceptable. Some will consider death as preferable to fighting for health and social care. It will be the cheapest, quickest and simplest option. All research studies conducted on assisted dying show ‘not wanting to be a burden’ as the principal reason for seeking death.
Dangers, safeguards and outcomes
- What are the dangers of legalising assisted dying?
The same kind of consequencesas we have already witnessed in Holland and Belgium, the under-reporting, the thousands of deaths, extensions of the service to children, older people ‘tired of living’ and so on. The numbers will grow year on year as this becomes practice. In short, horrors to come…and disabled people will be first in line – history teaches us that. If we accept the mindset of ‘mercy killing’ we know where that will lead – again.
- Are there practical safeguards that could be deployed alongside a change in the law that would mitigate such dangers?
No. The only really valuable safeguard in our current position is to continue to have the DPP review each individual case and even that is problematic.
- What outcomes would panellists envisage implementation of the Commission’s recommendations producing?
To suggest assisted dying is the answer is to abandon the hope and support we need to get on with our lives, however limited that may be. Legalising premature death undermines our right to demand support to live with dignity, however disabling our condition. It questions the state’s responsibility to ensure all citizens can live without pain and access public support and care services so we can live and not simply survive.
Many individual disabled people’s suicidal cries for help come from a lack of proper practical, emotional and medical support needed to live dignified lives, rather than from the suffering they experience as a result of a medical condition. Such loss of hope – which forces some to see death as their only option – is easily misinterpreted in a society that continues to see and treat disabled people as second class citizens. Individuals risk being easily exploited by the ‘right-to-die’ movement or, worse, by family, friends and health care professionals. Their attitude is not compassion – it is prejudiced and disablist.
Changing the law
- Can the Government be relied upon to tackle the issue, one way or another, through legislation, given successive Governments’ failure to do so since Diane Pretty’s case ten years ago?
These were not failures and I think it is a pretty biased point of view which describes them as such. They were triumphs of good sense over a wealthy lobby and the pressure they have created.
- In the context of Government intervention, what is the balance of public sentiment on the issue?
Public sentiment is largely based on emotional reactions to individual hard cases and not real deep thinking, and is notoriously ill-informed. To base anything on ‘a whole lot of people say so’ is nonsense: if a whole lot of people said all red-headed people should be excluded from the acting profession, we wouldn’t just agree and say ‘well, lots of people say so’. Wilde said public opinion was ‘the attempt to organise the ignorance of the community, and to elevate to the dignity of physical force’; and Russell said that ‘One should respect public opinion in so far as is necessary to avoid starvation and to keep out of prison, but anything that goes beyond this is voluntary submission to an unnecessary tyranny’; Churchill thought there was no such thing as public opinion; only published opinion.
In all of them we find the same thing: there is real danger in elevating public opinion beyond its limits.
If we just simply roll over on public opinion every time something was to be decided we would have the death sentence, and we would probably have corporal punishment of Dickensian proportions. Despair will be endorsed as a reasonable expectation for which early state-sanctioned death is an effective remedy. Is that really the message we wish to give to disabled and terminally ill people? Is this really the future we wish to offer those who become disabled and terminally ill? Those of us who know what is to be disabled with a terminal condition are fearful that the tide has already turned against us. As Jane Campbell has said: ‘If I should ever seek death at those times when my progressive condition challenges me, I want to know that you are there supporting my continued life and its value. The last thing I want is for you to give up on me.’
- What are the prospects and implications of the courts changing the law (for example in Tony Nicklinson’s case), in the absence of Parliamentary intervention?
Hopefully nil. Even Lord Falconer spoke clearly in a recent radio interview about changes to the law of murder being well away from anything his ‘commission’ would consider or want government or the courts to consider.
People already have the right to refuse unwanted treatment. Suicide is no longer illegal. Making it legal to assist someone to die does not give that person a ‘new’ human right – it provides a new immunity from justice for those who provide the assistance. Killing is not just another medical treatment option, and it must not be made any part of routine health care. In these days of cost cutting in the NHS and social care, assisted dying could all too easily become an attractive ‘treatment’ remedy. But the killing of Tony Nicklinson is a step too far even for Falconer as it would require someone to actively take his life.
Finally, research in the Netherlands has shown that legalising assisted suicide has led to nearly a quarter of overall intentional killings of patients happening without request. This research has also shown that intentional killings, by either withdrawal of treatment without the patient’s permission or by deliberate over-doses of symptom control, have increased. Nowhere is there evidence to show that legalising assisted dying has deterred medical practitioners from intentional killings, or that the number of these killings has declined.
In Holland the numbers of people recorded as having died by euthanasia (around about 11,000 a year) are seriously under-reported. The focus is on the patient’s experience of life/suffering as intolerable and thus it is easier to make the person themselves responsible for the judgement. But also, in Holland, a death is only recorded as euthanasia if the patient asks for it (that’s the 11,000) – if they don’t ask and are ‘euthanased’, they are recorded in a different way. We don’t know how many die this way. But you can be sure that this assisted dying/euthanasia practice will not reduce the numbers of untimely deaths – they will only increase in number and range. And as one medical practitioner, speaking about what she considers to be strict regulation in Holland, put it to me: and if it’s difficult here, you can always slip over to Sweden and get it there.