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MEDIA BRIEFING – Not Dead Yet UK/Resistance campaign

What is Not Dead Yet UK (NDY UK)?

NDY UK is a network of disabled people who actively oppose any changes to assisted suicide legislation which would, if enacted, effectively legalise the lives of disabled and terminally ill people being prematurely ended.

NDYUK was formed in 2006 in response to concerns among disabled people about the increasing number of well coordinated campaigns aimed at promoting social acceptance of voluntary euthanasia and assisted suicide.

The Resistance campaign is being launched to highlight disabled and terminally ill people’s fears and to ensure legislation prohibiting assisted suicide and euthanasia remains in place.

Not one organisation of, or for, disabled and terminally ill people has campaigned for any change to current legislation. This includes organisations that advocate on behalf of people with multiple sclerosis and motor neurone disease; two disabling conditions that are often referred to when describing who would benefit most from a change in legislation.

Opposition to assisted dying is not confined to the medical profession and religious groups. Most importantly, it includes the very people whom would be most affected by any change in legislation. All those involved in NDY UK are disabled people including people with physical and sensory impairments, learning difficulties, and mental distress.

NDY UK’s concerns

Following Lord Joffe’s Assisted Dying for the Terminally Ill Bill (1), we also opposed amendments to the Coroners and Criminal Justice Bill (2) that could have led to legalising assisted dying, and even euthanasia, for people with terminal conditions.

We remain concerned about the Director of Public Prosecution’s guidance (3) on assisted dying legislation, which could be interpreted as opening the door for assisted suicide.

Facing the prospect of increasing cuts in the public sector, people with life-limiting conditions are worried that the support they need to continue to live fulfilling lives is dwindling, resulting in more people being forced to consider premature death as the only viable option. Our concern is that seriously ill, emotionally distraught people would come under intense pressure to end their lives, partly to avoid further suffering, but also to avoid becoming a burden on their families and their carers.

All too often, individual disabled people’s suicidal cries for help come from a lack of proper practical, emotional and medical support needed to live dignified lives, rather than from the ‘suffering’ they experience as a result of a medical condition. In a healthcare environment subject to increasing economic pressures, efforts to provide comfort for patients would diminish if the law were to be changed.

Furthermore, legalising assisted dying would reinforce attitudes that the lives of disabled people are not worth living – that they are a burden to themselves, their relatives and friends, and the state. The consequences of enshrining such negative attitudes in law would place disabled people in very real danger. Research in the Netherlands has shown that legalising assisted suicide has led to an increase in intentional killings, by either withdrawal of treatment without the patient’s permission or by deliberate overdoses of drugs used for symptom control (4).

Key events that give rise to concern include:

Lord Joffe’s Assisted Dying for the Terminally Ill Bill to legalise assisted dying which was defeated in the House of Lords in 2006.

Legal guidance, issued in March 2010, by the Director of Public Prosecutions, which make clear that someone “motivated wholly by compassion” to help someone with a "clear, settled and informed wish to die" is unlikely to face the Courts.

The End of Life Assistance (Scotland) Bill, currently before the Scottish Parliament, which enables ‘end of life assistance’, for persons who have been either ‘diagnosed as terminally ill’ or are ‘permanently physically incapacitated to such an extent as not to be able to live independently’

The campaign for legalised assisted suicide (5), fuelled by Diane Pretty’s applications to the courts for her husband to be able to end her life without risk of prosecution; the case of Debbie Purdy who has sought legal clarification on what would happen to her husband if he helped her travel abroad to end her life; and the paralysed former rugby player Daniel James who died at a Swiss clinic in September 2008.

What we want to see

Our ‘Resistance ‘campaign seeks to encourage MPs (and others in positions of influence) to focus on enabling disabled and terminally people to live more comfortable, rewarding lives, rather than end them prematurely.

For more information and media inquiries, please contact Ben Furner on ben@furnercommunications.co.uk, 01273 463461 or 07946 355795.

References:

1. End Of Life Assistance (Scotland) Bill

On 10 February 2010, the Scottish Parliament established the End of Life Assistance (Scotland) Bill Committee, to consider the general principles of Margo MacDonald's Bill and report on them to the Scottish Parliament. On Wednesday 3 March 2010, the Committee launched a public call for evidence, inviting individuals and organisations to make written submissions with their views on the Bill. The consultation closed on Wednesday, 12 May 2010. The Scottish Parliament has agreed a deadline of Wednesday 24 November 2010 for the end of Stage 1 consideration of the Bill.

The Bill’s catchment area is truly breathtaking. Section 4(2) says that, to be eligible for ‘end of life assistance’, a person must either have been ‘diagnosed as terminally ill’ or be ‘permanently physically incapacitated to such an extent as not to be able to live independently’. These two categories cover most people in Scotland who are moderately or seriously ill or disabled. They include not only those who may expect to die within the next six months, which is how the Bill defines terminal illness, or others who have degenerative illnesses such as Parkinson’s or multiple sclerosis but also people with very common conditions such as, for example, insulin-dependent diabetes, heart or lung disease or arthritis and anyone with a disability, ranging from tetraplegic paralysis to blindness, deafness and immobility, that makes them dependent on support from other people.

2. Lord Joffe’s Assisted Dying for the Terminally Ill Bill

Lord Joffe’s Assisted Dying for the Terminally Ill Bill (2006), which sought to legalise what it called “assisted dying”, was defeated on its second reading in the House of Lords on 12 May 2006 by a margin of 148 votes to 100. There is no current Bill before parliament on either assisted suicide or euthanasia. The text of the Bill, together with the Select Committee’s report, can be found at the Select Committee’s website:

http://www.parliament.uk/parliamentary_committees/lordsassisted.cfm

3. Coroners and Justice Bill

Following agreement by both Houses, this Bill became law on 1 February 2010. The Bill was controversial due to proposed amendments which, had they been accepted, would have made it lawful for people to assist others to go abroad to commit suicide. The resulting Act of parliament simplifies language in the offence of assisting or encouraging suicide, and tightens up the Suicide Act to outlaw internet websites that encourage suicide.

4. Guidance on prosecution around assisted dying

In March 2010, Keir Starmer QC, the Director of Public Prosecutions, was forced by a House of Lords ruling to publish guidance on prosecutions for assisted suicide after a long-running legal fight by Debbie Purdy.

The guidance stresses that assisting suicide will remain illegal and that any person who gives such assistance, whatever the circumstances, will remain liable to prosecution. However, there are some features of the guidelines which give rise to concern including the prospect that prosecutions for assisted suicide will be less likely when the “assister” was “motivated wholly by compassion” and the deceased had a "clear, settled and informed wish to die" .

5. Research in the Netherlands has shown that legalising assisted suicide has led to an increase in intentional killings, by either withdrawal of treatment without the patient’s permission or by deliberate overdoses of drugs used for symptom control.

'Physician-assisted suicide' is now practised with increasing openness in the Netherlands.

About every five years, statistics on Dutch euthanasia are released. The figures for 2005 show that, while there was a small decrease in voluntary euthanasia, this has been offset by a major increase in what is called ‘terminal sedation’. In 8.2% of all deaths, patients are given drugs which sedate them ‘continuously and deeply’ until they die. Voluntary euthanasia (1.7%), non-voluntary euthanasia (0.4%) and terminal sedation accompanied by withdrawal of nutrition and hydration, now account for nearly one in ten Dutch deaths (Carenotkilling.org.uk).

The Remmelink Reports of 1990 and 1995 showed that the number of patients receiving euthanasia increased from 2,189 in 1990 to 3,253 in 1995, accounting for 1.7% and 2.4% of all deaths, respectively (van der Maas et al, 1991, 1996.)Overall, there was a 60% increase in all forms of euthanasia from 1990 to 1995.

“Virtually every guideline set up by the Dutch - a voluntary, well-considered, persistent request; intolerable suffering that cannot be relieved; consultation; and reporting of cases - has failed to protect patients or has been modified or violated” (Hendin et al, 1997).

6. The campaign for voluntary euthanasia

This campaign has been helped by a series of high profile cases, including Diane Pretty’s applications to the courts for her husband to be able to end her life without risk of prosecution. Pretty, who had motor neurone disease, took her case to court using the Human Rights Act to argue that the Director of Public Prosecutions should make a commitment not to prosecute anybody involved in helping her to die. The House of Lords eventually turned her case down, while the European Court of Human Rights refused to acknowledge that the European Convention on Human Rights provided a right to die, and her appeal to that court also failed. Diane Pretty died in May 2002.

Debbie Purdy, who has multiple sclerosis, has repeatedly sought legal clarification on what would happen to her husband if he helped her travel abroad to end her life. After winning her legal battle in the House of Lords, new guidelines on assisted suicide law were published in March 2010 (see note 3).

Not Dead Yet UK

June 2010


 
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