Launch of Care NOT Killing

Care NOT Killing, a new alliance of 21 organisations formed to promote palliative care and oppose euthanasia, was launched on Tuesday 31 January. Members of the alliance include the Association for Palliative Medicine of Great Britain & Ireland, the British Council of Disabled People, RADAR, the Christian Medical Fellowship and the Medical Ethics Alliance.

The launch was featured on BBC breakfast TV, the Radio Four Today programme and Radio Five Live and made top billing on the BBC health pages.

Media coverage included:

Organisations can join the alliance either as CORE members (£1,500) or associate members (£50) and individuals can join for £10. You can also sign up for the e-newsletter online.

A series of interviews with senior doctors are available to view on the site and there is an abundance of news links, articles and resources.

Copies of new Care NOT Killing Leaflet 'Assisted Suicide; What is happening in parliament and what can I do about it?' are available free to members to distribute – send an email to info@carenotkilling.org.uk.

Apart from the many articles and news links on the site the pages on frequently asked questions (FAQs) on euthanasia and assisted suicide are a very valuable resource for those writing letters or involved in debates on the media.

Contact details of the group are as follows:

'Care NOT Killing' Alliance
PO Box 56322, London SE1 8XW
Tel: 020 7633 0770
Fax: 020 7681 1924
Mobile: 07929 178289
Email: info@carenotkilling.org.uk
Website: www.carenotkilling.org.uk

VES's attempt to rebrand itself as 'Dignity in Dying' provokes widespread protest

The Voluntary Euthanasia Society (VES) has changed its name to Dignity in Dying, sparking protest. The VES had hoped that the name change would improve its public image and help rebrand itself as a human rights group calling for free choice on all end-of-life decisions.

But the Association for Palliative Medicine has accused the organisation of trying to suggest dignity in terminal illness can only be won by euthanasia. It has written to the Trade and Industry Secretary to oppose the change.

The letter, also signed by the Medical Ethics Alliance, urged Alan Johnson to reject the euthanasia charity's application for a new trademark based on the phrase. It read: 'Dignity in dying is a phrase in common parlance in many sections of the population, being used by patients worried about the care they will receive.'

'Patients often ask whether they will have dignity in dying because they are frightened, feel abandoned, are worried they might be left incontinent, confused or in another state that will undermine their personal dignity. These patients are not asking for euthanasia or assisted suicide; they are asking for good care,' the letter said. 'For the Voluntary Euthanasia Society to seek a monopoly of a common English phrase in order to invest it with a totally different meaning is dishonest and will create confusion,' it added.

The association's chairman John Wiles told the BBC: 'What we are trying to do is get away from the suggestion that you can only achieve dignity in dying with euthanasia - that we totally refute.' He said the phrase 'dying with dignity' also meant getting good palliative care and that it should not just be the prerogative of euthanasia campaigners.

Disability campaign group Radar said the VES' name change was an attempt to move away from negative connotations associated with the word euthanasia, before a Lords debate on a bill on assisted dying. Its chief executive Kate Nash said before there was a right to die there must be a right to live as full and equal members of a fair society. 'Assisted dying legislation will not create autonomy until supported independent living is a real societal value and a reality for disabled people.'

A Telegraph editorial titled 'Euthanasia's euphemism' concluded, 'it is hard to shake off the suspicion that euthanasiasts are shy of spelling out what they are really about, viz killing people.'

References:

Joffe Bill Update

Lord Joffe has announced that the second reading (debate stage) of his amended Assisted Dying for the Terminally Ill Bill will be on 12 May. The bill was reviewed in the last e-bulletin of 8 December 2005.

We can expect a strong campaign from the pro-euthanasia lobby as the date approaches. This will focus on high profile cases and opinion polls, such as that pictured on the VES (DiD) website purporting to show public support for a change in the law.

Lord Chan dies

Lord Chan died after a short illness in January. He had chaired the inaugural meeting of the Care NOT Killing alliance in the House of Lords on Tuesday 13 December 2005 and will be sadly missed.

Motor neurone disease

The high profile motor neurone disease (MND) cases of Annie Lindsell, Diane Pretty, Reginald Crew and John Close are often used by the pro-euthanasia lobby to advance their cause; and their surviving spouses and relatives Brian Pretty, Wyn Crew and Evelyn Close are frequently seen and heard on media advocating a change in the law.

Brian Pretty has recently remarried and has been named patron of the renamed VES Dignity in Dying.

There are approximately 5,000 MND patients in the country for whom the average life expectancy is 14 months. Of the 1,000 MND patients who die in the UK each year (three every day) most die comfortably with good palliative care. Choking virtually never occurs. Indeed after Diane Pretty's death, Dr Ryszard Bietzk, head of medical services at the Pasque Hospice, Luton, where Mrs Pretty was cared for, said her death was 'perfectly normal, natural and peaceful'.

Requests for euthanasia or assisted suicide are extremely rare, even for MND patients, when patients' needs are properly addressed. The well-publicised exceptions of MND patients who want assisted suicide are simply that - well-publicised exceptions. It follows that the key priority must be to make the best quality care more readily available.

New advances also mean that the care of MND patients is improving all the time. A recent report in the journal Lancet Neurology outlines research where a University of Newcastle-upon-Tyne found quality of life was improved, and life expectancy boosted, in some cases by years by the use of a simple ventilator and facemask.

The law should not be changed for a few insistent individuals as it would put a much greater number of vulnerable people at risk of feeling under pressure, whether real or imagined, to request early death.

An excellent review on motor neurone disease is available on the website of the All Party Parliamentary Group on Dying Well.

In a BBC interview at the time of Diane Pretty's death George Levvy of the Motor Neurone Disease Association explains that with good palliative care no MND patient need die in distress.

The Law commission consultation on reforming the law on homicide

This new consultation is a very important development. Responses to the consultation need to be in by 13th April 2006. Although the Commission proposals do not envisage abolishing the existing criminal offences of mercy killing or assisted suicide, nonetheless there are some worrying phrases such as 'benign conspiracy' to imply that these should be considered in a different category of offence, as if killing in these circumstances was not as serious a matter. There was a clear trend already in the numbers of cases apparently which the CPS simply do not bring to court, and there was the evidence too of the reluctance of juries to convict if the defence persuades them that the action of the doctor was entirely motivated by compassion.

As well as the immediate concerns about what the Law Commission is saying, there is also a very important strategic risk posed by this development. When it comes to Parliament in perhaps a couple of years time, a Government Bill to reform the law of homicide could be amended by proponents of euthanasia who will certainly seek to use it as a vehicle either to introduce mercy killing, or at least to abolish the offence of assisting suicide. Unlike the Joffe Bill, this would be a Government Bill and would be given government time for debate.

Dr Anne Turner

Dr Anne Turner's assisted suicide at the Dignitas Clinic in Switzerland has provoked huge media interest. The 66-year-old retired GP from Bath, who suffered from progressive supranuclear palsy (PSP), travelled with her three children and a BBC Television news crew to commit suicide the day after the VES sought publicity for its change of name to 'Dignity in Dying'. The case is now being given high prominence on the VES website.

Despite the media hype surrounding the case much of the media reflection has not been in Dr Turner's favour – and her move seems to have elicited words of caution from leading journalists and commentators. PSP, which also took the life of comedian Dudley Moore, is not unlike Parkinson's disease in its clinical course, producing disturbances of gait, balance, swallowing and vision. The average survival is ten years. Dr Turner had only been diagnosed in 2004 and was still able to walk with a stick. She had apparently announced her intention to seek assisted suicide on the day the diagnosis was initially made. See in particular Mick Hume's article in the Times, 'A grisly theatre of death – not exactly an advertisement for a dignified end'

Lord Winston Interview

Readers of the e-bulletin will be interested to read comments from Lord Winston in this month's Third Way magazine.

What do you think of Lord Joffe's Assisted Dying for the Terminally Ill Bill?

'Oh, well, it's mad. Mad. I mean, Lord Joffe has very good intentions but…

You know, it's interesting, all our conversation has been about the beginnings of life and its importance, but I don't think the ethical issues around the beginnings of life are nearly as important as those around the end of life. That's a much more important discussion. I do not think that we should be terminating life.

Of course, it would be nice, in an ideal world, to be able to terminate somebody's suffering, on demand; but the risk of abuse, the risk of old people being devalued, the risk of people wanting to change their mind but never having the opportunity to do so, the risk of actually getting it wrong, make it to my mind a route down which we should not go. How could you frame a law in such a way that there would be no risk of doctors being seen as executioners by some patients, or old people being frightened of going into hospital because they felt they might be bumped off by the nursing staff?

One of the great deficiencies in our society, actually, is the lack of respect, and the lack of understanding we have for ageing and older people. And I think that this devalues them a little bit further.'

Misleading Guardian editorial

A misleading editorial in the Guardian on 19 January titled 'Euthanasia: Moving to a more open system' has provoked a stream of very good letters including many from palliative care doctors including John Wiles, Baroness Finlay, Mark Cheesman and Idris Baker. Links to letters below:

Euthanasia 'extremely rare in UK'

Euthanasia is extremely rare in the UK and few doctors want to see it legalised, a study says. Pro-euthanasia campaigners have long argued terminally-ill patients are helped to die in secret but fewer than 1% of deaths were by euthanasia in 2004 and few doctors want to see the law change, the Brunel University survey of 857 doctors found.

Mental Capacity Act Codes of Practice give power of attorney by 'tick box'

Government ministers are considering plans to let adults make lasting power of attorneys, that is appoint someone who could block life-sustaining treatment (including food and fluids) if they were too ill to do so themselves. They could do so by ticking 'Yes' or 'No' boxes and answering a two-line question, a government consultation paper on implementing the act suggests. The Mental Capacity Act, which comes into force next year, gives people the chance to appoint someone who can instruct a doctor on their behalf. Under plans to implement the act, they would need to indicate if this included powers to refuse life-sustaining care. But critics have said the proposals amount to 'back-door euthanasia'. The form is part of a consultation paper issued on 20 January. The consultation will end on 14 April.

Vast majority of doctors oppose 'assisted dying'

Doctors.net.uk (DNUK), a free Internet network of UK doctors, conducted an on-line poll of its 120,000+ members in November 2005 on euthanasia and palliative care. Members were emailed the following statement which also appeared on the homepage of the website and asked either to agree or disagree.

With current improvements in palliative care a change in legislation to allow physician assisted suicide and/or euthanasia is not necessary.

A total of 2,213 doctors responded, believed to be a record for DNUK polls. The results?

Agree: 1517 (69%)
Disagree: 696 (31%)

Parliamentary Early Day Motions

Early Day Motion is a colloquial term for notices of motions given by a member for debate 'on an early day' but for which no date has been fixed. Few are actually debated. Generally, EDMs are a way by which members can put on record their opinion on a subject and canvass support for it from fellow-members. They are also an excellent source of information and useful to quote in correspondence with MPs. A full list of EDMs can be found on the parliament website. Three recent EDMs of relevance to debates about palliative care and euthanasia are:

House of Commons debate on Care of the Dying

Conservative MP Angela Browning held an adjournment debate on Care of the Dying on 12 January (Hansard Column 536-544). In it she urged the government, which is about to produce a further white paper on health, to make better provision for palliative care. She drew attention to the following:

  1. The Marie Curie Fellowship Association has urged the Government 'to allocate further resources to roll out the Delivering Choice Programme in the imminent White Paper . . . There must be some result along these lines in order to move beyond empty words and commit to real progress in extending choice in end of life care'.
  2. The British Heart Foundation has said it would 'continue to maintain pressure on the Government and urge them to make their decisions on palliative care resources based on patient need not patient diagnosis.'
  3. The NHS Confederation produced in November a very good report on improving end-of-life care where it recommended that 'All people at the end of life need to have choice over the place in which they die. The hospice system may need to be extended so that high-quality specialist end-of-life care is available to more people, with all diagnoses.'

In answering for the government, the Parliamentary Under-Secretary of State for Health (Mr. Liam Byrne) stated that 'while the majority of people state that they would prefer to die at home, only about 20% manage to achieve that, with 4%. dying in hospices, 20% dying in care homes, and some 56% still dying in hospital. That must change.'

'Palliative care provision is currently heavily weighted towards cancer patients. Some 95% of all referrals to specialist palliative care services are for people with cancer, but cancer accounts for only 25% of deaths each year. Addressing that inequality in care is an important challenge.'

'Enabling people at the end of life to live and die in the place of their choice-in other words, the chance to experience a good death-should be the great aim not only for the NHS but for all who work in social care. The issue will be clearly set out in the forthcoming White Paper, as part of the Government's agenda. We are committed to ensuring equality of access to high-quality palliative and end-of-life care, regardless of age or condition.'

Dutch Study Shows Patients Requesting Euthanasia Likely Depressed

A study published by Dutch researchers in the September 20, 2005 edition of the Journal of Clinical Oncology (JCO) has shown that at least 50% of patients killed under the Dutch euthanasia programme were suffering from depression. In addition, 44% of those suffering from cancer showed clinical signs of depression when they asked for euthanasia.

Supreme Court ruling on Oregon's assisted suicide law

The US Supreme Court has upheld a law allowing doctors in the state of Oregon to assist terminally ill patients to commit suicide. Justices voted 6-3 to back the law, under which doctors are thought to have assisted with at least 208 suicides.

Much has been made of the ruling by the pro-euthanasia lobby but the BBC news headline US judges back assisted suicide was misleading.

Wesley Smith's 19 January review 'Nothing to die over' is a helpful explanation of the significance of the judgement. 'The Supreme Court did not issue a sweeping endorsement of physician-assisted suicide. Nor, did it 'uphold' the Oregon statue as a matter of constitutional law. Rather, the Court's decision is so narrowly drawn and steeped in the arcania of regulatory and statutory interpretation that it would normally spark little interest outside of administrative-law journals.'

Action Points

Our key priorities now are to change the hearts and minds of the public and to do all we can to ensure that the new bill does not get beyond the House of Lords.

  1. Write to members of the House of Lords as the second reading of the Joffe Bill approaches on 12 May urging them to oppose the bill and vote against it. A full directory of members of the House of Lords, along with the postal address, is available on the Parliament website. The full debate on the previous bill on 10 October 2005 can be read in Hansard on the UK parliament website. If peers have already spoken against the bill, thank them for the stand they have taken. If you want to know where individual peers stand then ask us.
  2. Argue specifically against the Oregon Bill. The Care NOT Killing leaflet (available from info@carenotkilling.org.uk) gives a good introduction. Also see Baroness Finlay's address in the House of Lords debate and the ITF Oregon briefing paper. Write in your own words and preferably keep it to a single side of A4.
  3. Meet your local MP to share your concerns. You can find out who your MP is by consulting the Parliamentary website locator. The site will also provide extensive links to your MPs concerns and voting record.
  4. Join the Care NOT Killing Alliance on the website at www.carenotkilling.org.uk and encourage others to do the same.
  5. Be informed. Read this and past enewsletters and check the Care NOT Killing Website regularly for updated information, news and comment.
  6. Educate colleagues and friends about the issues. If possible hold a meeting to bring people up to date on the issues. Care Not Killing can provide high profile speakers, media spokespeople and also a DVD of senior doctors' interviews to stimulate discussion – email us at info@carenotkilling.org.uk

Steering Group
Care NOT Killing Alliance