The Motor Neurone Disease Association says it will not support the move by Annie Lindsell, who has suffered from the degenerative disease for five years. Ms Lindsell, 47, is to apply to the High Court on Thursday for a declaration that her GP may lawfully give her a drug to ease her distress, even though it may shorten her life.
The association's decision highlights the confusion among medical charities who wish to ease the suffering of patients but at the same time want to avoid condoning suicide.
Ms Lindsell is confined to a wheelchair and cannot use her arms or do anything for herself. Motor neurone disease is a fatal condition which destroys the nerves, causing progressive wasting of the muscles and paralysis. Ms Lindsell is understood to fear that she may suffer a lingering and distressing death ending in suffocation and choking.
The association said it was firmly opposed to the legalisation of euthanasia but respected the right of any individual to determine how they wished to die. The disease affects 5,000 people in the United Kingdom; it killed the actor David Niven and also Jill Tweedie, a journalist. Most sufferers die within three to five years of diagnosis but with the right care most do so peacefully, and choking and suffocation are very rare.
Tricia Holmes, director of care development for the association, said: "It was very strongly felt by our trustees that every one of the areas of work we are involved in is about supporting people living with the disease. It is for other organisations to advise on euthanasia."
However, the Multiple Sclerosis Society said it would consider demands from its members for euthanasia. It recognised that for a few people in the terminal stages of the disease even palliative care "will not alleviate ... mental or physical anguish" and that some "will wish to contemplate assisted suicide". Multiple sclerosis has similar disabling effects to motor neurone disease but it is less often fatal. The society is consulting sufferers, their carers and doctors on their attitudes to euthanasia.
Ms Lindsell has been campaigning for a change in the law on euthanasia since last year. Her case, which is to have a preliminary private hearing before Sir Stephen Brown in the Family Division of the High Court, is expected to hinge on the doctrine of double effect, under which doctors may give drugs to control pain even though their effect may be to shorten life. Although not enshrined in law, it has become accepted practice as a result of the work of the hospice movement over the past 20 years. Ms Lindsell's lawyers are believed to want to extend the doctrine to include the relief of distress as well as pain.
Doctors warned that this could allow patients who were depressed to request suicide. However, Dr Vivienne Nathanson, head of ethics at the British Medical Association, said: "I can't see anything here that the courts need to decide about. ... We would say you're having the treatment, not to hasten death, but to control symptoms and alleviate suffering."
"[Ms Lindsell] may be saying she wants this contract with her doctor to be binding if she gets to a stage in her illness where she can no longer indicate her views. That would have a degree of sense."Reuse content