Signal failure

The Assisted Dying Bill will receive its Second Reading in the House of Lords on 18 July. I’ve written about ‘assisted dying’ before here and here.   Having recently engaged in lengthy debate with advocates for the Bill, albeit within the 140 character confines of Twitter, I wanted to add a few further reflections on their arguments.

The Bill before the House of Lords is based on legislation which has been in place in Oregon since 1998, providing physician assisted suicide (PAS) to legally competent adults who are expected to live for less than 6 months. Importantly this legislation is subject to annual monitoring regarding the numbers, characteristics and motivations of those seeking PAS.

This monitoring reveals that since 1998 39% of people seeking PAS cited concern about being a burden on family, friends of care-givers as a reason.  In 2013 the figure was 49%. It also reveals that the main reasons given by people seeking PAS in Oregon to date have been loss of autonomy (91%), being less able to engage in activities making life enjoyable (89%) and loss of dignity (82%).  Inadequate pain control or concern about it was cited in only 23% of cases.

If an objective of ‘assisted dying’ is – as Dignity in Dying argue – to relieve suffering, the suffering most cited relates to what people feel able to be or do and to their sense of self, rather than physical pain.  As such we must conclude that their motivations are not wholly intrinsic in nature.

In addition to regarding these motivations as legitimate and accepting them at face value, the Bill’s advocates also argue that it is targeted only at those expected to die within 6 months and hence that it has no implications for others and for disabled people in particular. Yet while the option of ‘assisted dying’ may only avail itself once people enter a 6 month zone of anticipated death (and only then does it stop being called ‘assisted suicide’), people will for the most part have been living with a progressive condition for a considerable time – sometimes their whole life.  It is  during this time that their sense of being a burden, of losing autonomy and dignity will have developed or that they may have reached a ‘clear and settled intention’ to end their own life as a consequence, not necessarily during the final 6 months of their life.   Indeed, many campaigners are seeking a change in the law related to assisted suicide outside of the 6 month timeframe for just these reasons.  For example, the Daily Mail reported Tony Nicklinson’s daughter  as saying ‘Dad hasn’t got a life – his life consists of being washed by strangers, undignified moments watching the world go by around him. Life should be about quality and happiness, not just for the sake of it.’   Hence, while the Assisted Dying Bill will not allow a persons desire to die to find expression until they are deemed to have only 6 months left to live, it nevertheless legitimates their goal of doing so, irrespective of the motivations, from whatever point they arrive at a so called ‘clear and settled intention’.

This is why both the wider social and economic context in which such decisions are made and the signal that legislating for assisted dying might send cannot be ignored in any debate about the merits or dangers of this Bill.  People do not come to be viewed as or feel a burden, or to lose their sense of dignity or autonomy in a vacuum.  Such feelings are shaped by context, experience, the availability and quality of support and by expectations.  These external conditions prevail upon people with progressive conditions just as they prevail upon people with non-progressive conditions.

On Monday it was reported that 515,000 fewer people even receiving care in England since the economic downturn hit.   We live in a society that is rapidly dis-investing in older and disabled people – including those with progressive conditions -, rendering care an ever more private rather than public matter, with individuals and families left to cope alone increasing feelings of burden among carers and cared for.  We already lived in a society which devalues older and disabled people to the extent that medical professionals sometimes assume people prefer death over living without actually discerning their views. This is a particular risk for people with progressive heath conditions.

Surely even the Bill’s advocates recognise the dangers of providing a right to assisted dying in the absence of a right to assisted living?  That people may arrive at a settled view that they wish to die well in advance of reaching the 6 month zone because of the social and economic climate is a legitimate concern, and the statistics from Oregon regarding the motivations of those seeking assisted suicide do not provide any reassurance on this.

It is worth recalling at this point how the last unsuccessful attempt to change the law – Lord Joffe’s ‘Assisted Dying for the Terminally Ill’ Bill of 2005/6 – supported by Dignity in Dying did not include the 6 month time-limit, only that the person had a terminal illness, the capacity to decide and access to palliative care. While the new Bill’s advocates claim there are empirical reasons for it to impose a 6 month limit I believe the real reason is the limits of current public opinion and recognition that the scope of the Joffe Bill exceeded it. Given this and ongoing campaigns and strategic litigation such as that relating to Tony Nicklinson it is therefore not illegitimate as some have argued to express concern about a slippery slope were the Bill to become law.  There is every reason to anticipate that the scope of the law would, if enacted, eventually extend to those with terminally illness generally (if not also to people with serious impairments or health conditions that are not terminal in character).

It is true to say as did the recent British Medical Journal editorial in support of the Bill  that ‘That much mentioned victim—the elderly lady who believes she has become a burden to others and offers herself up for assisted dying—will not qualify’ under the Assisted Dying Bill.  But one does not need to be concerned that the Bill’s internal safeguards would fail to be worried about where the motivations to end ones life come from, the signal this Bill would send in the current context, accepting as it does that feeling a burden is sufficient reason to ask to be helped to end ones life, and the potential for the laws scope to expand to encompass such a scenario in future.

Laws – such as Equal Marriage, the Lobbying Act or prohibiting smoking in public places, send social signals, deliberately or otherwise which mean their impact extends far beyond their specific provisions.  That this Bill would indicate that our compassion should extend to helping people to die, but at the same time fail to give people the support to live seems to me a dangerous signal indeed.

 

 

 

 

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7 thoughts on “Signal failure

  1. The objective of assisted dying legislation is to give people control over a death which is going to happen soon anyway. The vast majority of people who opt for it – and there will not be many of them, if Oregon is anything to go by – will be people with end stage cancer or motor neurone disease or lung disease. A degenerative disease is not the same as a terminal illness. There will either be no cure (MND), or they will have gone through all the chemo and radio therapies and have run out of options. They may be unable to breathe easily. They may be unable to swallow. They may be in pain and discomfort. They may be coughing up their own faeces. They have no more quality of life. And they know it is only going to get worse in the weeks or days ahead. That’s what loss of dignity means and what loss of autonomy means, and what it means to say that you are not able to do the things that make life enjoyable. Many people rightly fear that. Living becomes pointless, it’s only a matter of waiting for an inevitable end. Some disabled people may say that their own lives are like that and they do fine. Well, I have met many disabled people who are physically very limited or breathe through ventilators, and their lives are nothing like the existence of the people with cancer who I have seen struggling on their deathbeds. The two groups are not in any way comparable. The people with terminal illness I have known have wanted to live, they have fought to live for years, but eventually, there is nothing more they can do because the disease has progressed too far, and then there is the end stage which is lonely and miserable. Unless you have spent time with someone with end stage cancer or motor neurone disease, I am not sure you can pass judgment on assisted dying legislation,
    And the example of Oregon is a counter-example to the slippery slope fear. There has been no widening. A tiny % of people choose to take advantage of the law. People are not pressured. It seems to work fine. Even militant pro-lifers cannot find much by way of “abuses” to criticise. Of course some people want a much wider law. But I cannot see them ever succeeding, you only have to look at the opposition to this Bill to realise how difficult it would be. There have been many attempts to pass this very limited assisted dying provision. I would oppose voluntary euthanasia for people who are not dying, and so would the majority, and I am confident that it would not happen in UK.

  2. Pingback: .@neilmcrowther on assisted dying / voluntary euthanasia | arbitrary constant

  3. Tom I really wish I had your confidence that this law will not lead to the slippery slope. You have “evidenced” this with using the Oregon stats. Isn’t it interesting that statistics can be used in ways to “prove” anything the author wants it? I remember only too well when I was doing my degree realising this. Also it is about whose statistics you choose to read when you wish to “evidence” this! What about the piece written last week by a doctor working in Holland who had been in favour of AS but has realised now that he was wrong?
    Disabled people are living in fear at present. Fear over their benefits being taken away, sanctions by DWP etc also cuts in care funding all these things have lead to people taking their own lives. You state that “Some disabled people may say that their own lives are like that and they do fine. Well, I have met many disabled people who are physically very limited or breathe through ventilators, and their lives are nothing like the existence of the people with cancer who I have seen struggling on their deathbeds” You fail to demonstrate why these peoples lives are fine. I would suggest that many disabled people have to cope with chronic pain everyday of their lives but some are able to have a quality of life because they have the right support. I have had two members of my family die with cancer. One died in hospital and one with her husband at her side with good support from the Marie Curie nurses. I will leave you to work out which one had a good death.

  4. Well we all have our opinions on why this bill is timely and potentially harmless because it’s given there are so few ‘abuses to criticise’. The fact that there are any abuses hidden under the guise of this legislation should be cause to scream out with rage with every fibre of your being.
    Since when did this government become the bedrock of compassion? I don’t think any of us can speak for groups of people with this, that or the other impairment, living well with their dying or fighting for every breath – unless of course they have all signed for one of us to become appointee? The plain fact is this is about enshrining in law the right to bump somebody off who in the bigger picture has become perceived to be a failed human, not worthy of further support. I have been present at the bedside of dear friends who have longed for more time, struggled to live longer and were in utter agonies at their final leaving. But I know they wouldn’t have wanted anyone else to have the right to assist that ending. It is not the personal choice towards a meaningful end of life that is at stake here. It is this legislation that gives powers to the privileged few to decide who is worthy of further economic support towards a good quality of life and frankly, which of the non-productive would be better dead. Yes the slippery slope begins here with this legislation.

  5. Tom I recognise what you say and in truth I support your central point that if we were having an honest disconnected from other worldly considerations, we would in fact be describing the wishes of a very small minority of individuals who as you describe have exhausted all form of medical intervention, up to and beyond the point that the medical interventions such as high dosses of drugs reduce the quality of life so much that it is often a very poor quality of life.

    The slippery slope argument is not where I am automatically heading here or at least not by the normal route of disabled people identifying that their fear is that the more AS is “normalised” the more people who are not in the last 6 months of a terminal illness will be considered “Better off out of it”. I would say though that the most troubling aspect of the slippery slope argument is that those who are FOR the bill are confused and confusing about what it is they want or why they want it.
    For example Paul Lamb said on Yesterday’s Sunday Morning Live programme on the BBC that what he actually wanted was to die because he hated the fact that he was disabled. Or that his level of disability meant he had to depend on others, how that forced him to accept the he no longer could have bodily autonomy. (He did not say all those things explicitly, I am using those words to describe his rational.) In other words he wanted euthanasia as he did not want to be disabled.

    Listening to the many debates on radio and other media, it is a common meme that members of the public say about their own views. The idea that they do not wish to be a burden is linked not with the notion of someone having to wipe their bum, but more the loss of ability and autonomy to be able to wipe their own bum. The notion that being dependent on someone for all personal care is a state of living so beyond the pale for many people that they gladly tell other viewers, listeners, or readers that this would be a “living hell” and they would rather die. This then sets up the start of the slippery slope from the pro AS side by allowing the mixing od the ideas that AS is NOT just confined to terminally ill people in the last 6 months of life who have outlived all the abilities of help that medicine can offer. Maybe you could engage with all sides of the debate Tom to reinforce what the bill is for not just one side in an attempt to alleviate our fears?

    The Slope gets steeper though and far more like sheer ice, when the pro AS lobby start to talk about the “RIGHT TO DIE” & “Human Rights”. In a world and in particular our country, that is for the moment dominated by neoliberal ideas around state support, deserving and undeserving poor, value for money, austerity, and my personal favourite “fairness for the taxpayer”, the idea that people have a right to die is like looking at the issues through the wrong end of a telescope. It also means that it underlines the feeling that many people have that life is reduced to a set of values that have nothing to do with personal wishes or what is best for someone who is terminally ill. It smacks of pandering to a part of society who want a choice about something that they may never face, or such a tiny number of people that it becomes making legislation for there few not the many. It also seems that, fairly or unfairly that the background music of austerity and rationing is making an impact on this debate. Again the impact or in terms of the slope, the next step on this slope is not just being made by fearful and headless chicken disabled people. Very often it is the pro AS side that introduce the idea that “We cannot afford it”, the it being intensive care, expensive cancer drugs, specialist therapy units, well funded and resourced home care options, nursing and care services provided 24/7 in the home by fully qualified staff at full professional rates rather than minimum wage. All of this is unaffordable so we are told but instead of talking about how it could be afforded or what kind of society we want to live in and how that can be delivered, we instead have a debate about killing people. oh yes let us not be mealy mouthed, the people who want this bill cannot do the dead for themselves. Someone will have to end their life, render them dead, force a state of mortality on them. Call it, or dress it as we want it comes down to someone acting on another with the end result of the cessation of life in one of them.This is something we do not even allow the state to do in our the peoples name, we outlawed state killing when we ended capitol punishment.

    I have read some of your work Tom, and I know you get all this and I feel like you have got the bad end of a really bad rant. I do though want to say to you that whilst you are right to keep the focus on what the bill actually does, in the face though of all I have said I know many activists and non activist disabled people who see what he has written as not acknowledging that we have legitimate fears, and memories that are full of broken promises and things that sounded at best benign which turned in to out right attacks on our civil liberties and human rights. Now you may think we are all barking, and are a ranting pitchfork waving bunch of doomsayers, it would be a better tactic then to both appease the mob by engaging with the whole issue not just the technical aspects. Also from your statements about meeting disabled people who need lots of support but who have no wish to die indicates you do acknowledge that some people perhaps the ones most likely for the proposed legislation to be aimed at, do recognise that how they are supported does mean that their right to life, not a life, is at some risk.

  6. Meanwhile, in the week leading up to Falconer, the ‘slippery slope’ objection/concern (i.e argument from precedent) is shown time and time again to be completely founded and reasonable. Tutu saying people who need assistance to breath cost too much money and should be dead. Carey going on about people in the prime of life having priority blah blah. Hacks supporting involuntary euthanasia for Alzheimers patients etc. Paul Lamb wheeled on to support Falconer and being well and truly shown to be campaigning for the extension of the terms of the Falconer bill. Yet in the midst of this, people are treated like scared and stupid children, for pointing out the obvious.

  7. Pingback: Slippery Slopes, Political Realities and Comparing British Apples with American Oranges in Assisted Suicide Debate

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