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:
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.
Thursday, 10 July 2014
In an eleventh-hour intervention, former supporter of the Dutch Euthanasia laws and member of the Euthanasia Review Committee in The Netherlands, Professor Theo Boer tells Britain that he was wrong. This article from the UK Daily Mail:
Don't make our mistake: As assisted suicide bill goes to Lords, Dutch watchdog who once backed euthanasia warns UK of 'slippery slope' to mass deaths
Wednesday, 9 July 2014
This article in today's Herald Sun, by Beyond Blue chairman, The Hon Jeff Kennett AC confirms that a complaint will be made by that organisation to the Australian Medical Board. This follows confirmation yesterday that the West Australian Branch of the Australian Medical Association will do likewise.
Earlier, The Black Dog Institute suggested that they may also make a complaint, but this has not been confirmed. In all, that makes five or possibly six complaints to the medical board int he last two years including one from HOPE.
Tuesday, 8 July 2014
The recent news concerning Dr Nitschke, Exit International and the suicide death of two men in Australia who were not terminally ill has forced the Australian public to confront the issue of assisting someone to die.
As Herald Sun columnist, Andrew Bolt points out, this is not something new. Nor is the public commentary from Dr Nitschke at the pointy-end of the debate: when a bill is before an Australian legislature.
When Nitschke comments on such bills there's a noticeable cringe factor among state-based supporters of such legislation, with the most common response being that Nitschke's comments 'are not helpful'.
Even though these organisations have always been effectively 'on the same page' as Nitschke in seeking legislative change, what they reject is essentially that Nitschke tells it like it is. To his credit, he shuns euphemisms and advocates directly for any adult to die by euthanasia or assisted suicide whenever they want - regardless of whether or not they have a terminal illness. This stands in direct contrast to the rhetoric and design of most proposed legislation that seeks to limit access to people who are suffering terminal illnesses. They, the state-based groups, argue for the present (the bill under consideration) whilst Nitschke shows the public the future.
This remains the case whether or not the proponents of said bills genuinely seek a limited remit or not. I have met some whom I believe only want such a limited model. But there are others who will clearly understand the incremental nature of such legislation: first get one foot in the door.
So, it is hardly surprising that the man termed 'the other Dr Death', Melbourne Urologist, Dr. Rodney Syme should be bleating on the ABC National news network today saying that he (Nitschke) "represents a maverick who's on the extreme end of the debate."
The report continued:
He (Syme) is eager to make sure the public sees that there is "a huge gap" between his advocacy group and the controversial views of Dr Nitschke.
"He is fundamentally not supported by the organisations who support Dying With Dignity," Dr Syme said.
He would say that. Syme's organisation, the euphemistically titled 'Dying With Dignity Victoria (DWDV)' is currently working towards a push for their agenda at the Victorian State elections later this year. Syme is clearly concerned that the media furore over Nitschke and Exit makes his agenda harder to pursue. To put it bluntly, the stench makes them stink too!
And it is true that some of the state-based groups have distanced themselves from Nitschke on their websites, but as far as I can see, DWDV is not one of them. It's a while back now, but the DWDV website does say that in 1998 Syme's group, 'organized and supported Philip Nitschke’s election campaign as an independent in Menzies, standing against Kevin Andrews.'
Sure, people take different directions and relationships change. Apart from the frustration that groups like DWDV must feel when Nitschke effectively rains on their parade, this formerly-known-as a Voluntary Euthanasia Society has, itself changed its tune in recent years. But, like the chameleon, it remains the same creature.
Syme and DWDV now supposedly shun the use of the terms euthanasia and assisted suicide, Syme himself arguing in The Saturday Paper a few weeks ago: 'So, let us argue about voluntary assisted dying, not assisted suicide.' (see my reply here)
As I reported earlier, 'voluntary assisted dying' or simply, 'assisted dying' is the new buzz phrase adopted in the UK and elsewhere in recent years essentially because euthanasia & assisted suicide bills were getting exactly nowhere. This use of euphemisms was recently documented in an excellent article by Jacqueline Harvey on the website The Public Discourse:
Sanitizing Suicide: Killing as Compassion
Physician-assisted suicide advocates learned in the early days of their crusade that people do not like the word “suicide.” Prior to Vermont, states that decriminalized the practice did so through carefully crafted ballot initiatives that glossed over the academic literature and its concerns about state-sanctioned killing. These campaigns used clever slogans to suggest that assisted suicide is a positive act, a personal choice, and a matter of compassion for the dying. The Hemlock Society even rebranded itself, changing its name to Compassion & Choices. This suggests that offering an ill person poison is compassionate and that suicide is a legitimate choice for persons with terminal diagnoses. Word choice is critical: a 2013 poll showed a steep 19-point difference when people were asked if they support “assisted suicide” rather than “ending a patient’s life.”
Although the act is the same, the perception of euthanasia is shrewdly euphemized as “aid in dying” or “death with dignity” to make what is tragic and cruel appear helpful, empowering, and even compassionate. Conversely, such euphemisms imply that pain control and palliative care are somehow lacking in empathy.
The organization now known as Compassion & Choices condemns the term assisted suicide, insisting that there is a distinction between taking one’s life when mentally competent and terminally ill, and taking one’s life due to depression when not facing a terminal illness. Again, this glosses over theacademic literature that shows the extent of untreated depression among those seeking such “aid in dying” and the failure to refer for mental health evaluations in other states that have legalized this practice.
By “aid-in-dying” standards, as long as a person has a prognosis of fewer than six months to live, regardless of the accuracy of that prognosis, it is not suicide for that patient to choose “death with dignity.” This, of course, disregards the number of physicians who misdiagnose patients as terminal who may have years to live. Pro-euthanasia groups claim that suicide chosen by those with mental illness ought to be prevented, yet they argue that suicide for those with physical illnesses is a right that others must support.
Unlike abortion advocates, who employ the word “choice” and shy away from the word “death,” voluntary euthanasia proponents do not recoil from the words “death” and “dying.” Instead, they try to present assisted suicide as a positive form of death; the phrase “death with dignity” implies that natural death is undignified. “Aid” and “dignity” are positive terms, like the appeal to autonomy implicit in the mantra “My Life. My Death. My Choice.”
All of this rhetoric conceals the substance of what is being chosen: suicide. It seems that euthanasia advocates know that most people naturally believe that taking one’s own life is a tragedy of those without hope.
Every lobby group looking to prosecute its case will use slogans and adopt the kind of language that they hope will resonate and help them achieve their goal. But we're not talking about run-of-the-mill causes, schemes or projects here. This is about death and the protection of citizens from the ultimate injustice.
More than any other debate, euthanasia and assisted suicide demands that a spade be called a spade.
Monday, 7 July 2014
Shortly after NZ List MP, Maryan Street introduced her now-withdrawn 'Énd of Life Choices' Bill in 2012, Prime Minister John Key weighed into the debate.
His comments showed, unfortunately, that he had little grasp of the issue. I commented at the time:
Mr Key said yesterday that he could understand the argument that legalising euthanasia might put pressure on the elderly to end their lives early, in the face of "rapacious grandkids", but "I don't really buy that argument".
So, Elder Abuse is not a problem in New Zealand? Sure, and New Zealand's full of hobbits, too!
". . . If I had terminal cancer, I had a few weeks to live, I was in tremendous amount of pain - if they just effectively wanted to turn off the switch and legalise that by legalising euthanasia, I'd want that." He added.
Here again Key appears not to understand that pain can be effectively managed at the end-of-life. And I thought we'd long gotten past the curious and erroneous notion that euthanasia was about 'turning off the switch'or 'pulling the plug'.
The Prime Minister also indicated 'in principle support' at the time but has recently changed his mind on that point at least in a recent interview with Family First New Zealand's Bob McCoskrie. The New Zealand Herald reporting:
But he said he would not vote for a bill proposed by Labour MP Maryan Street that would allow any adult suffering from a condition likely to cause their death within 12 months to request medical assistance to die.
"If it's the same bill, I'll oppose it because I think the way that bill was structured is not good law," he said. "In the world that I live in, in my head, it's a conscience issue. So when someone says to me 'euthanasia' I think of the person that is terminally ill, that is going to die, and in a tremendous amount of times and in my world, euthanasia is a legitimate thing in that situation."Mr Key acknowledged that he voted for an earlier euthanasia bill in 2003 which supposedly limited the access to terminally ill people only.
Following the General Election in New Zealand in November, Maryan Street is expected to table yet another attempt at legalising euthanasia and/or assisted suicide.
In the wake of the ABC 7:30 report last week that highlighted the relationship between Dr Philip Nitschke, Exit and the suicides of two psychologically troubled Australian men, most news reports have focused on condemnation of these actions and Nitschke and Exit.