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ss nucleus - spring 2006,  News Review

News Review

GP travels to Switzerland to die

A retired GP from Bath, Dr Anne Turner, travelled to Switzerland in January to end her life at the controversial Dignitas clinic in Zurich.

She suffered from progressive supranuclear palsy (PSP), a degenerative condition caused by lesions in the area of the brain that co-ordinates eye movement. Patients experience permanent blurring of the vision and serious problems with gait and balance. PSP patients may also suffer from depression, apathy and mild dementia. They do not actually die from the disease itself, and may live for ten years or more after diagnosis. PSP predisposes patients to complications such as pneumonia secondary to swallowing difficulties, or head injury following falls.

Dr Turner was diagnosed in 2004. Her husband, also a GP, had died in 2002 from multiple system atrophy, and his brother months before that of motor neurone disease. Dr Turner was determined not to suffer a similar fate. 'I saw what happened to my husband, and I don't want to end up like that, and I don't want to end up like Dudley Moore, who could not walk, talk, or even blink.' Having already suffered several falls, being unable to bath herself, drive, or walk without a stick, she said she was 'just so tired of being dependent on people'.

The news of her suicide came a day after the Voluntary Euthanasia Society (VES) announced that it was changing its name to 'Dignity in Dying' – a move that has angered those who regularly care for the dying (see below). Dr Turner had been a member of the VES for a number of years. She invited the BBC and other journalists to accompany the family on their trip in order to publicise her appeal for legal reform.

VES chairperson, Deborah Annetts, called for the government to give time to Lord Joffe's Assisted Dying for the Terminally Ill Bill saying, 'Only this Bill could have prevented Anne Turner from taking her life.' However, the bill only applies to the 'terminally ill' in its current formation and may therefore not cover PSP patients under a strict interpretation of 'terminal illness'. Julia Millington of the Pro-Life Alliance commented, 'It is perverse that the proponents of euthanasia use these cases to support a change in the law... we need to find better ways of killing the suffering rather than killing the patient.' ( 2006; 24 January, Daily Mail 2006; 25 January, PSP fact sheet: National Institute of Neurological Disorders, Times 2006; 25 January)

Opposition to assisted dying gets vocal

A new alliance set up to support palliative care and oppose assisted dying was launched on 31 January. The Care Not Killing alliance includes, among others, The British Council of Disabled People, The Association for Palliative Medicine of Great Britain and Ireland (APM), the Muslim Medical Association and the Christian Medical Fellowship.

The alliance aims to bring together groups and individuals who oppose assisted dying. Initial opposition will inevitably focus on Lord Joffe's Assisted Dying for the Terminally Ill Bill, which has its second reading in the House of Lords on 12 May. The alliance has also called on the government to improve palliative care across the nation.

John Wiles, APM Chairman and a member of the Care Not Killing steering group, commented, 'There is an urgent need both to campaign for more and better palliative care whilst opposing any change in the law. This coalition is bringing together those many organisations and individuals, both in the healthcare sector and outside it, who regard euthanasia in any form as an unacceptable way forward.'

In a separate move, three organisations – The British Council of Disabled People, ALERT and the Christian Medical Fellowship – have grouped together to launch a legal challenge to the Voluntary Euthanasia Society's (VES) attempts to trademark 'Dignity in Dying', the phrase they adopted as their new name on 23 Jan.

The APM accused the organisation of trying to suggest that dignity in terminal illness can only be won by euthanasia. In a letter to the Trade and Industry Secretary they urged him to reject the VES' application saying, '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…they are not asking for euthanasia or assisted suicide; they are asking for good care.' ( 2006; 23 January, 2006; 31 January)

Living will codes under discussion

The draft codes of practice for the Mental Capacity Act were issued on 9 March. The codes outline the involvement of healthcare professionals in treating – or ceasing to treat – patients without capacity, including enactment of 'living wills'.

The Act was passed last year and is expected to come into force in April 2007. Of specific concern to some doctors are the sections that deal with 'living wills' and 'lasting powers of attorney' (LPA). The former allow a person to set out their wishes for future treatments should they become incapacitated. These directives already have some force under common law, but will now be given statutory force, making them binding upon doctors.

LPAs are a new aspect to the law that will enable a person with capacity to appoint a friend or relative as their 'attorney', to make decisions regarding their medical treatment should they later become incapacitated. Patients who have no LPA will come under the care of a new court of protection with the power to make decisions on their behalf, or to appoint another (ie a relative or social worker) to make the decisions.

The codes are open for consultation until 2 June 2006. ( 2006; 9 March, 2006; 9 March,

Doctors told: keep baby alive

The parents of a severely disabled baby at the centre of a 'right to life' court case have won their battle to have his treatment continued. The ruling is considered particularly important as it is probably the first time the court has been asked to decide the fate of a child with intact cognitive function.

19-month-old baby MB suffers with spinal muscular atrophy, a degenerative genetic condition that eventually results in almost total paralysis. He cannot make any sound, breathe or swallow but has near or full cognitive function for a child his age. He has to undergo several painful procedures every day to keep him alive.

Doctors treating MB say it is in his best interests to withdraw ventilation and let him die. One said the child's life was intolerable and highlighted the invasive interventions as well as suggesting that the cons outweighed the pros. MB's parents disagree. His mother said, 'Just because he is in a hospital doesn't mean he has a poor quality of life, because his family is there.' He has favourite television programmes, likes nursery rhymes and enjoys the company of his siblings. His father – a Muslim – says he does not believe it is right for anyone to decide if the child should live or die.

In his judgement, Mr Justice Holman ruled that MB should be kept alive saying, 'It is indeed a helpless and sad life but that life does in my view include within it benefits… I do not think that the perceived advantage of a “good death” can yet tip the scales so that the benefits of survival and life itself are outweighed.' ( 2006; 8, 15 March, Independent 2006; 16 March, Scotsman 2006; 25 February)

South Dakota challenges US abortion rights

The US state of South Dakota has passed a law banning abortion except where the mother's life is at risk. The law (effective from 1 July) will mean that doctors who perform terminations could face up to five years in prison and a $5,000 (£2,800) fine.

Planned Parenthood currently runs the only abortion clinic in South Dakota, which performs 800 terminations each year and is likely to challenge the new law. Director Kate Looby said, 'Our doors remain open. We will not be closing, hopefully never.'

Abortion in the US is currently governed by the 1973 Supreme Court ruling Roe v Wade. In that decision the Court ruled 7 to 2 that state governments cannot prohibit abortions because a woman's right to terminate her pregnancy is protected by the 14th Amendment of the US constitution - freedom of personal choice in family matters. The case set up a 'trimester system' that gives women an absolute right to termination during the first trimester of pregnancy, but allows governments regulatory discretion during the second and third trimesters.

The South Dakota law presents a direct challenge to Roe v Wade. During the expected legal challenge the state will have to defend the law, and it will not come into effect unless South Dakota can take the case to the US Supreme Court and win. Abortion opponents have started offering money to help the state pay legal bills for such a challenge, with one anonymous donor pledging $1million.

Some anti-abortion activists question the wisdom of the move, however, fearing that South Dakota will be defeated at the Supreme Court. The ability to win is largely influenced by the affiliations of the current judges. Anti-abortion campaigners have been encouraged in recent months by the appointments of two conservative judges whom they hope will overturn Roe v Wade if such an opportunity arises. But that may not be enough. Cristina Minniti, of the National Right to Life Committee commented, 'Currently there are at least five votes, a majority, on the US Supreme Court to uphold Roe v Wade'. ( 2006; 7 March, New York Times 2006; 23 February, 7 March)

Natallie Evans loses in Europe

A woman who went to the European Court of Human Rights to fight to use her frozen embryos without the father's consent has lost her case.

Natallie Evans had IVF treatment in 2001 with her then partner Howard Johnston before undergoing treatment for ovarian cancer, which left her infertile. Mr Johnston subsequently withdrew his consent to the embryos being stored and used. Under the 1991 Human Fertilisation and Embryology Act either party can remove their consent at any time, and both party's consent is needed for storage to continue.

Miss Evans started her court battle in June 2003. After failing at the High Court and Court of Appeal, and having her case rejected by the Law Lords, she lodged an appeal with the European Court. She argued that the UK law was a breach of her Human Rights - particularly Article 8, the right to a family life - as defined under the European Convention of Human Rights. The Court said that her right to family life could not override Mr Johnston's withdrawal of consent. They also ruled unanimously that the embryos did not have an independent right to life.

Miss Evans has sought another hearing in front of the European Court. Mr Johnston expressed relief at the judgment: 'It seems that common sense has prevailed. The key thing for me was just to be able to decide when, and if, I would start a family.' Josephine Quintavalle of the pro-life group CORE (Comment on Reproductive Ethics) noted that Mr Johnston had 'become a father' when the embryos were created. ( 2006; 7 March, BioNews 2006; 14 March)

Religious hatred law defeated as Blair fails to vote

In a surprise defeat of the controversial religious hatred proposals, the House of Commons voted against the government's version of the Racial and Religious Hatred Bill on 31 January.

The law will still come into effect, but will be a watered-down version of the bill the government had wanted. It will be illegal intentionally to use 'threatening' words and behaviour to stir up hatred, but saying things that are merely critical, abusive or insulting will not be an offence.

Two votes were held. In the first, the question was whether the racial hatred laws would be changed, and the government was defeated by ten votes. On the issue of the religious hatred laws, the government was defeated by just one vote. Prime Minister Tony Blair voted in the first vote, but left before the second. This means the House of Lords' version of the bill, which was considered a dramatic improvement by Christians campaigning against the bill, will become law. Andrea Minichiello Williams of the Lawyers' Christian Fellowship said, 'It is now hard to envisage a case where a Christian, preaching from the word of God in good faith and from good motives, would fall foul of this legislation.' ( 2006; 1 February,

and finally…

An obese US father of two is over three-quarters through a mammoth trek across America, with only six weeks until he reaches his goal - the Rockerfeller Plaza, New York. Steve Vaught's journey began last April in Southern California, when he weighed almost 30 stone. Speaking of his decision to start trekking he says: 'Being fat is physically and emotionally painful. It diminishes the quality of the good things in life and it will ultimately bring about an early demise…after consulting the family and getting their blessing I have made the decision to stop this merry go round and dedicate myself to losing the extra weight...' His journey has attracted attention all over America, and has made him a counter-culture icon to some - his online journal contains numerous musings on the problems of a car-dependent society where junk food is plentiful. So far he has lost 114 pounds. ( 2006; 22 March,

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