A High Court judge has declared that the General Medical Council's (GMC) guidelines on withdrawing food and fluids are unlawful.
Leslie Burke, who sought a judicial review of the guidelines, is a 44 year old disability rights adviser who suffers from congenital cerebellar ataxia. He was afraid that doctors would remove artificial nutrition and hydration (ANH) against his wishes once he loses his capacity to speak.
The 2002 guidelines Witholding and Withdrawing Life-Prolonging Treatments: Good Practice in Decision Making enable doctors to remove ANH from a patient who has become permanently incompetent because of a severe medical condition with a poor prognosis. Doctors must judge whether ANH is more of a burden than a benefit to the patient and, in consultation with the patient's relatives, take into account what the patient would have wanted.
Mr Burke argued that the guidance could breach his 'right to life' under the European Convention on Human Rights and result in inhumane and degrading treatment. Mr Justice Munby ruled that while the guidelines were generally very compelling, he took issue with their interpretation of the law: 'The legal issues are of the utmost significance potentially to all of us…the claimant has in principle established his right to relief.'
After the judgment Mr Burke said, 'There have been times when I have found this quite painful…but it has all been worthwhile. It seems like a great weight lifted off my shoulders.'
The GMC has sought leave to appeal against the decision. Sharon Burton, their senior policy advisor, commented that, although they were glad for confirmation that Mr Burke's wishes should be followed, 'the case raises important points of principle and there are some areas where we consider further clarification may be needed.'
Two pieces of legislation currently before Parliament could also impact end of life decisions. The Mental Capacity Bill, published in June this year, is currently progressing through the House of Commons. It seeks to define how patients lacking capacity should be treated and sets the limits for advance directives. In the House of Lords, the Assisted Dying for the Terminally Ill Bill is currently under scrutiny by a Select Committee. It seeks to legalise assisted dying for terminally ill patients with 'unbearable suffering'. Concerned parties, including CMF, have raised a number of reservations about both bills.
At the BMA annual representative meeting in July this year a proposal that the wishes of patients who have lost mental capacity but previously indicated their desire to receive ANH should be respected, was endorsed by 59 votes to 56.
Source: BMJ 2004;329:72, bbc.co.uk 2004; 30 July, timesonline.co.uk 2004; 30 July, telegraph.co.uk 2004; 31 JulySteven Fouch (CMF Head of Communications) 020 7234 9668
Alistair Thompson on 07970 162 225
Christian Medical Fellowship (CMF) was founded in 1949 and is an interdenominational organisation with over 5,000 doctors, 900medical and nursing students and 300 nurses and midwives as members in all branches of medicine, nursing and midwifery. A registered charity, it is linked to over 100 similar bodies in other countries throughout the world.
CMF exists to unite Christian healthcare professionals to pursue the highest ethical standards in Christian and professional life and to increase faith in Christ and acceptance of his ethical teaching.