Friday, 11 July 2014

Signal failure - reflection on what's wrong with the UK assisted dying bill and euthanasia & assisted suicide bills generally

This post originally appeared on the blog of Neil Crowther - making rights make sense. Looking at the broader issue of the effect that the UK Assisted Dying Bill wold have on the social contract with the aged and infirmed, Crowther makes observations that hold true for all euthanasia & assisted suicide legislation:

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.

1 comment:

  1. When people say they don't want to be a burden on others this is always trotted out by anti-euthanasia folk as something that can be fixed by better care. I think the real reason people give this answer is that it will make them look less selfish. In other words, they are telling a white lie because suicide is regarded as a selfish act. Scratch beneath the surface of someone who is extremely old or ill, and you will find someone who is very, very tired. If you've ever been really sick, you will know the tiredness I am talking about. If you haven't you won't have a clue. I am referring to full-on fatigue that mere words will never describe, the sort of tiredness a week of sleeps will not fix. Death can seem a welcome release from such a situation.

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