A right to die?

Simon Thomas outlines a recent debate on assisted dying.

Last week at the National Assembly I initiated a debate on support for the principles of the right to die as set out in Lord Falconer’s Assisted Dying Bill. The Assembly rejected the proposal by 21 votes to 12, but the large numbers of abstentions – 20 – reflects I believe a real uncertainty about how to address this issue in an ageing, medicalised society and I am sure the proposal will return to the Assembly at some stage.

It is important at the outset to emphasise that the Bill deals with assisted dying for those facing certain death only: it is not voluntary euthanasia. But the debate threw up important issues, and showed how well the Assembly can work across parties on occasions.

I believe that good law should empower the individual to control their lives as much as possible. Towards the end of life, we need to allow and support people to be in as much control of their exit as they have been over the rest of their lives.

Already in the UK some 25-30 people a year choose to travel abroad for assisted death. Assistance for these people to achieve their wish has been effectively decriminalised by DPP guidelines. Yet do the same in Wales as you would for your partner in, say, a Dignitas clinic in Switzerland and you run the risk of prosecution.

The dilemmas faced by families and individuals can be overwhelming. People have gone to court to ask for permission for their doctor or relatives to help them die peacefully. This permission has been refused. The courts correctly judging that it is for parliament to decide. Yet we shy away from a full debate about the conflicts that our increasing longevity and a technically advanced, medical model of care are throwing up.

This was put succinctly by Atul Gawande in the third of his enlightening Reith lectures this year: We’ve had I think an about 50 year experiment with medicalising mortality, with casting it as just another problem for us to treat like any other, and I think that experiment is failing. But we have an alternative emerging. It’s one where we learn and elicit what matters most to people in their lives besides just surviving

Prof Gawande points to evidence of how a patient’s control over his or her treatment can lead to better outcomes in alleviating suffering. The most high profile recent example of such choices was perhaps Lynda Bellingham.

He reminds us that 80 per cent of our population now will die in hospitals or institutions – a remarkable change from the 1950s when the majority of people died in their homes.

Some countries and states have tried to reconcile these competing demands – to save life but to allow the individual the right to end their life when unbearable – with changes in the law. Oregon is the template for Lord Falconer’s current Bill. And in fact, only a very small number of patients go on to have an assisted death in that state – fewer than 80 in total in 2013 out of the annual 30,000 deaths. Around 40% of dying people who meet the strict safeguards to obtain life-ending medication never use it, simply taking comfort from having the option. The law has worked well and safely there.

Now many may say this is precisely the task of good palliative care and that is undoubtedly the case for the vast majority facing terminal illness. But it cannot alleviate suffering for everyone nor give the choice that some desire.

Legal assisted dying complements palliative care; encourages open discussions around end-of-life care; and increases investment in end-of-life-care and uptake of training by healthcare professionals. Research by the Economist Intelligence Unit which ranked end-of-life care across the world found that debate and legislation on assisted dying was a catalyst for improved end-of-life care services. This is not an either/or situation.

The truth is that the current law is inadequate. It does not deter covert,  illegal assistance and places both professionals and friends and family members of dying people in a terrible position.

Surveys between 2010 and 2014 have consistently found between 75 and 80% of adults would support assisted dying for terminally ill adults.

As Atul Gawande put it in his Reith lecture: When faced with unavoidably unbearable suffering, it is heartless to think we might not offer the option of assisted dying

Though I was disappointed that the Assembly did not agree with the cross party motion regarding assisted dying, it was good to hear honest debate and some of that was reflected in the media. But it was both disturbing and fascinating to see that BBC Wales seems more interested in whether someone had their hand on their hips in the Senedd than this hugely important ethical topic.

If many people feel the Assembly is boring and irrelevant it may partly be because many of our citizens are excluded by a media obsessed with personalities, and political reporting that has sold out to that style of broadcasting.

Simon Thomas is an Assembly Member for Mid and West Wales.

9 thoughts on “A right to die?

  1. Don’t want to trivialise your article as the subject you have raised is important as well as being complex and equally of national concern – in my view a far better place for addressing the assisted death issues is the Westminster.

    Would like to pick up your last sentence as I happen to be one of those sceptics that sees the Assembly not only a boring and dull but equally irrelevant to most people of Wales – Perhaps the Assembly should debate assisted dying of itself for the sake of Welsh people, Welsh Education and Welsh Economy?

  2. Assembly debates can be stultifying and boring but Simon Thomas is quite right; media non-coverage and trivialisation make them more peripheral than they should be.

  3. Although the Assembly can be criticised for many things, it deserves credit on this occasion for considering the issue properly and coming to the right decision.

    The law is about general principles and that it is right to kill the sick is not a general principle that we should want established.

    Yet if we retain the contrary general principle that we should fight to preserve the lives of sick, as we should, that general principle should not be applied officiously or inflexibly or without reference to the wishes of the patient. In particular, there is need for greater debate about end of life issues, so that people are enabled to make more informed choices. Such choices should include whether or not to die at home, even if that is not the option most likely to prolong life. That applies not only to the terminally ill but to the elderly and infirm in general. It is a shame that the ‘assisted suicide’ debate is the only part of the question of how we treat the elderly or long-term infirm that gets any publicity.

    It says something about our ‘civilisation’ is that the only time we appear to talk about them is when we are debating whether or not to kill them.

  4. I am grateful to u for brining this issue up at the n.a I was very disappointed by some of my AM s I contacted on the issue, either because they passed the buck and said this was an issue for Westminster , hello? Or because they implied they didn’t want to upset some of their constituents . My point was they shd represent my point of view as well as ppl who think they have a right to dictate how those who do not want to die in agony or travel abroad should end their lives. Why is no one minds upsetting me but they pussy foot around religious beliefs? I respect other pls beliefs why shd nt mine be respected? I don’t force ppl to have abortions but I believe women shd have the right to have access to abortion in this country. We no longer decide that religious doctrines shd dictate women’s lives. Why r we happy to allow women to make a decision to end a potential other life but we won’t allow terminally ill grown ups to make a decision about their own lives? This seems totally non sensical to me and hypocritical. Ppl always argue we will be pushing R older relatives toward death. Good grief if we really believe we r all so horrible and selfish what r we saying about r society? That it’s only the law that stops us all murdering ppl we ve had enough of? I was particularly disappointed with the two labour women I contacted.i Wd have hoped for better from them.

    It seems to me it’s either plaid or the greens for me at the next election. I’d like to vote for poor old ed, I like him and think he’s a victim of the press, who lets face it seem to determine the outcomes of elections in our so called democracy, but these local labour a.m s have put me off. Plaid seems to share more of my values.

  5. It’s really welcoming to see that a cross-party group of Assembly Members brought this important debate forward, regardless of its outcome. Some of the best debates I have witnessed in Welsh politics (indeed politics altogether) reflect important topics such as this, which transcend the all too familiar party-political theatrics.

    Simon, you are entirely right in calling for better media coverage for the assisted dying debate. All to often coverage of this area, and in particular Lord Falconer’s Bill, has been characterised by subtle bias towards the status quo, inaccuracy, and a general recourse to emphasising religious opposition which does not reflect the plurality of opinion in 21st century Wales. The survey quoted in the above article demonstrates this. Sadly, the only time this issue really seems to make the headlines is when a legal challenge against the existing situation is lost, or when those suffering have sought to go to extreme measures to escape their pain; I refer particularly to the case of Tony Nicklinson who refused food to escape his locked-in syndrome which had made his quality of life intolerable. That such a situation exists in our current day and age is deeply distressing, but my letters of support for a change in the law to both number ten and various others received at best dismissal, and at worst no response at all.

    Of course, the specific legislation in question here would not go as far as to change the law in Tony Nicklinson’s circumstances, as it only provides for those facing certain death. But regardless of specifics, there is a broader question about the fundamental freedom of individuals to escape suffering where there is a means for them to do so, and they have expressed a clear wish. It is a simple but basic matter of equality; suicide has been decriminalized in England and Wales since 1961, but assisting suicide remains an offence. It is a situation which discriminates against those who are unable to act for themselves, and it follows that political defence of the status quo equates to discrimination too.

    When this Bill was first considered in the Lords, I exchanged some very constructive correspondence with Peers on both sides of the debate; correspondence which was broadly based in fact or informed opinion. It is in this manner that the debate should proceed. And media commentary should give this important issue the weight which it deserves. The right to end one’s life with dignity and escape suffering is perhaps the most difficult yet most important moral question facing our society today. It should not be shied away from, and this cross-party debate has been an important step in this process. I welcome the opportunity to engage with those on all sides of the debate and I am confident that, in time, the case for empowering those in pain to escape their suffering will be made.

  6. “deals with assisted dying for those facing certain death only” ??? Really? Who does not?

    Why are you spending unnecesary time on an issue you are not empowered, or elected, to deal with?

  7. I had the impression that the debate resembled the earlier Lords debate, on the Joffe draft, where there was an emphasis on rejecting the bill because of real or alleged weaknesses. The present, Falconer, bill has made it to a third reading in the Lords and the debate seems to have shifted away from wholesale rejection to concerns arguably to strengthening the wording to meet typical objections. With a longer and fuller acquaintanship with the issues I imagine we would see a similar shift in any further debate in the senedd. Certainly a stronger bill will surely be debated in the Commons after the general election, by which time there will doubtless have been further significant defections from the churches and the medical profession, bringing them more in line with the overwhelming opinion of the UK population as a whole

  8. I don’t want the WG deciding whether I can have control over the time, place, or method of my dying any more than I want them to have presumed control over my organs after I have died. In short I don’t want them!

    But if the UK government can get its increasingly defective ‘brain’ in gear to grant me similar rights to those I would have in Belgium then I would welcome that. IMO Belgium’s proposed extensions for dementia suffers and terminally ill kids also need to be put on the statute books sooner rather than later. Lord Falconer’s proposals don’t go far enough for my liking. Voluntary euthanasia and assisted suicide both need to be unambiguously legalised. It is totally insane that humans have fewer rights than a sick animal in the UK!

    The debate is gaining ground globally – there’s an interesting comparison site here:

    http://www.care.org.uk/advocacy/end-of-life/euthanasia-country-comparison

  9. Assisted suicide is an advanced form of medicalising dying, not an alternative to it. The only form of dying that is more medicalised than assisted suicide is active euthanasia.

    We mustn’t confuse a right to die with a right to kill. It is right that people shouldn’t be forced to have treatments that might prolong their life. That is not the point at issue. The aim of assisted dying legislation is to give some people – probably doctors – the legal right to kill other people. That cannot be described as reducing the medicalisation of dying.

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