Thursday, 16 May 2013

Assisted Dying

For many of us, the thought of what "End of Life" really means will rarely cross our minds.  However, over the past few years "Assisted Dying/Suicide" has been discussed more openly, particularly by those with enduring health conditions.  SIR TERRY PRATCHETT

On 1 December 2010, the End of Life Assistance (Scotland) Bill,  introduced by Margo MacDonald MSP, was defeated at Stage 1.  However, in September 2012 Margo secured cross party support for her Proposed Assisted Suicide (Scotland) Bill.  VIEW THE BILL

The proposed Bill would enable a competent adult with a terminal illness or condition to request assistance to end their own life, and to decriminalise certain actions taken by others to provide such assistance.

Such an important piece of legislation has received considerable press coverage.  It has raised awareness and inevitably divided opinion as to the best way forward.  Both Margo MacDonald MSP and Dr Ann Wilson have recently contributed to the debate on BBC Radio Scotland.  

Below are recent statements both for and against a change in legislation.  I hope this will help you form an opinion or tweak your interest to learn more about the Bill.  

Stephen Wilson, Director Social Care Alba

TRy, try again

Margo MacDonald MSP was recently interviewed by HOLYROOD Magazine. Her response is kindly reposted in part below.  The full original publication can be viewed here. HOLYROOD  

Margo MacDonald MSP is not one to give up on something she believes in. During the last parliamentary session MacDonald succeeded, where others had failed, in securing enough preliminary support for her End of Life Assistance Member’s Bill to be introduced. To her great disappointment, it fell at Stage 1. And yet, since then the Scottish political landscape has changed dramatically. Forty-eight newly-elected MSPs entered the chamber following the 2011 Scottish parliamentary election, giving MacDonald a largely new audience to work with. However, to MacDonald, it is those outside of Holyrood who matter most and she says it was the supportive correspondence and comments she received since the first Bill fell that eventually persuaded her to look again at introducing another into the Scottish Parliament.
So, second time around, what is different about the proposals?  “This is better,” MacDonald states with confidence.  “It is better because we think we learned quite a lot from the last Bill. Public opinion has moved on and, I think, there is a better understanding of what it is we are proposing than there was last time.”
Underpinning the legislation is MacDonald’s enduring belief that competent adults with a terminal illness or condition should have the right to request assistance to end their own life. And she argues that whatever opposition is raised against the proposals, these rights of the individual are what truly matter.
“What we are proposing is a practical measure to meet what is an ongoing and sad situation for a very small number of people, it is to be admitted. But it doesn’t matter how small they are in number. Their needs and rights are the same as everyone else.”
The Assisted Suicide (Scotland) Bill ultimately seeks to achieve the same end as her first attempt and some aspects of the previous Bill remain, such as the requirement for two separate examinations by a doctor. However, there are also new additions. For example, the current version includes proposals to train facilitators to become “friends at the end” and help terminally ill people who want to take their own lives, such as by collecting medicine for sick friends. And there is also the introduction of a system of pre-registration, whereby, in a similar way to an individual registering an interest to become an organ donor in the event of their death, adults will be able to make a simple, freely-signed declaration to the effect that they regard assisted suicide as an option that they may or would wish to pursue.
“Our reason for suggesting it was two fold,” MacDonald explains.  “Firstly, we thought it gave lie to the argument that people were going to be coerced or persuaded against their will. If, when they are in absolutely unchallengeable full capacity, they say to their doctor, should I ever find myself in this position I would want to be able to have recourse to a law that allowed me to end my life with someone’s help. And we are quite sure that that is how it would work.”
She continues: “We thought also it gave the medical and legal authorities in the area an idea of what the future scenario they could expect — would they have to make special provision or in fact was no special provision needed. It gives them some sort of pre-intelligence about how the Bill was likely to be used.”
At the same time, she believes that public opinion has continued to grow in their favour, spurred on by cases such as that of locked-in syndrome sufferer Tony Nicklinson, whose story painfully illustrated the reality of why campaigners like MacDonald fight so hard for legislative change on this issue.
“The example of Tony Nicklinson did more, I think, than anything else. It is the old story about a picture telling a thousand words because you couldn’t see him, in my thinking anyway, without questioning the doctrine that says it is about society. In what way was society enriched and strengthened by that man’s suffering?”
MacDonald continues with passion: “That is what they never address and that’s why I get so angry because that is what it is about. It is not about people who already have lifelong conditions who have coped bravely or magnificently. It is about him. The people who are coping and who have a recognised syndrome will have a recognised support system and a recognised method of coping with it. He didn’t have that, that’s the whole point. He didn’t have a legally recognised way of coping with his absolute agony.”
The shelves of her parliamentary office are lined with folders full of letters from people who have written to share their similarly heartbreaking stories. And when she speaks of some of those whose lives she has been touched by it is a quieter, more emotional, MacDonald, rather than the political firebrand we are used to, who surfaces.
“We were at a funeral of a friend of ours on Friday. A fantastic woman who we got to know through working in this field. Agnes was typical of the sort of person that this was about. She knew that there was a likelihood of a dreadful death and I spoke to one of her close friends on Friday and she told me that it had been awful. The last two weeks had been awful. And she said, you know Agnes and you know what she would have been thinking. And, oh God, did I feel guilty that we hadn’t managed to do anything before now,” she says with evident emotion.
Having got to know some of those who believe they would benefit from such legislation, she knows how real an issue this is to them. And so she admits she personally found it very hard to see the last Bill fall.  “I’m hoping it gets easier. But so far, no sign,” she adds, sadly.
However, it is the feisty, forthright MacDonald that we have come to know who flares up once more when I ask how she will attack her latest campaign.
“I don’t make any apologies to anybody now because I have really thought about this and I’ve spoken to too many people. But whereas before I was prepared to concede and concede and concede — this time, no,” she says, determinedly.
“It is what is going to be best for the person we are talking about and the promotion of their right to have that ability to do what is best for them.”
The proposals are currently with the draftsman and Macdonald says she is pleased by the “care and attention” that the forthcoming Bill is being given.  “I’m glad they are doing it very seriously and properly because if this becomes a Bill and becomes legislation, it is legislation that everyone in the world will look at. So it has to be the best we’ve ever drafted.”
While the first Bill had initially been expected to go before the Parliament’s Health and Sport Committee, which was also considering legislation on palliative care at that time, it became caught up in the politicking surrounding convenership of the first Independence Bill committee.
Eventually a specialist bill committee was established, however, this time around, MacDonald wonders whether, given the focus on human rights, it might be heard by the Equal Opportunities Committee. Equally, it could find a home before the Health or Justice Committees and so, ultimately, she admits she is unconcerned about who hears it, so long as it goes through.
If it doesn’t, I ask if she will continue to pursue this issue for as many Bills as it takes?  She looks guiltily at her hard-working researcher as she answers.  “We’ve had five years of this already. If we didn’t get it in this time, I don’t think we could introduce it again in this Parliament. It would need to be in the next Parliament and I don’t know whether Peter feels he could do that in another Parliament. And I don’t know whether the people would put us back into another Parliament,” she jokes, adding that if they don’t then she’ll just stand outside and continue to argue for it from there.
However, she remains optimistic about this Bill’s chances of success, pointing out that it is a better constructed proposal that has been successfully road tested at home and abroad, and so expresses her hope, even confidence, that this time the story will have a different ending.
Holyrood, April 2013

Leave well alone

Dr Ann Wilson has over many years, been an advocate for the rights of disabled people.  She currently supports the work of DGVoice and has kindly given her thoughts below.

The law as it stands today should and must not be tampered with.  It safeguards all members of society against murder.  Let us not mince words.  We are talking of legalising murder.

The parallels with the law on termination of pregnancy are worryingly plain (again, let us not mince words, abortion).

In 1967 the law was changed to legalise abortion.  It was hedged with safeguards designed to make it the last not first choice in circumstances of unwanted pregnancy.  The intentions were good and the law was enacted at a time when women were dying as a result of illegal, back street abortions and reliable contraception was still not widely available. 

However, nearly half a century later in spite of freely available reliable contraception, abortion figures continue to rise steadily year on year.  This was not what was intended or envisioned when the law was brought forward.  Now termination of pregnancy is being carried out when even such minor conditions as hare lip are detected in the developing foetus or just as a convenient choice.  ISD SCOTLAND
The proposed Assisted Dying Bill has a chillingly familiar ring.  Many well intentioned people are in favour of this legislation out of feelings of sympathy and compassion for those in pain and distress.  What are not taken into account are the wider implications.  The door will be open to ever more lax interpretation of the ‘rules’ to suit the political and economic climate of the time.

In the not so distant future older and disabled people could well live in a climate where the socially responsible thing to do will be to request death rather than continue to be a ‘drain’ on society.  This, of course, might not be the case but the point is that this legislation gives a legal framework for such a possibility.  In a society where concerns are being expressed about the ability to provide for people as they get older and more frail or for people with impairments, this is not a farfetched scenario.  Is this what we want?  Is this what we mean?

In Holland where assisted dying has a legal framework, now the idea is being discussed that people over 70 should be able to request assisted dying even in the absence of a terminal illness.  This is a chilling glimpse into a future I believe few of us intend.

Assisted suicide is the easy option.  No need to waste valuable resources on terminal care.  After all, the less spent, the more people will opt to end their lives and no longer require the services of the state.           

My plea is to leave well alone.  Allow the judicial system to deal wisely and sensitively with any genuine cases as they arise.  Meanwhile improve the provision of care for those who are approaching death – both in the quality and quantity of dedicated medical care and in spiritual and psychological comfort.  For those with long term chronic conditions, concentrate research on improved and adequate treatment.

Yes, people should die with dignity, but at the time when death is marked out for them; with good pain relief and with good spiritual care of their choosing.  

Dr Ann Wilson, May 2013