In 2004 a desperately ill man, Leslie Burke, took the General Medical Council (GMC) to court over its guidance on the withdrawal or withholding of treatment. He has a progressive neurological condition from which he will die soon; it is possible that he will remain conscious but reach a point when he cannot communicate. He feared the GMC guidance could mean being denied artificial hydration and nutrition and being left to die of hunger and thirst; Justice Munby ruled that his wishes must be obeyed. Now the GMC has successfully appealed against this.
The case is a landmark in many ways and important for all patients. It exposed flaws in thinking and a lack of public understanding over how difficult decisions at the end of life can and should be made.
The Mental Capacity Act is due to come into force in April 2007. It will provide for those who lack mental capacity in the way that decisions are made in their "best interest". No longer will a doctor, or anyone else, look at an incapacitated sick person and say "I think he has no quality of life" or "You would not let an animal..." - for quality is the patient's call and when he is no longer able to express a wish, decisions must be taken without prejudice arising from the incapacity. Those who know the patient well must be consulted to get as clear a view as possible of what the person would have wanted; if the treatment would on balance benefit the patient and accords with his wishes, it should be given.
However, this does not mean treating at all costs. Far from it. When a treatment's burden exceeds its benefit, it is unethical. A competent treatment refusal must be respected. When the decision is in the balance, knowledge of what the person would have wanted trumps everything.
Every patient can refuse treatment in advance. The more specific this advance decision is, the more such an advance decision becomes watertight. If it has been discussed with the clinical team, it is less likely to be imprecise or falsified. When in doubt, the clinical team must act in favour of life.
This act gives a clear framework for end-of-life decision-making, and it contains important caveats. No one can demand that a treatment must be given if it is judged to be futile. It must be so. Otherwise the NHS could be forced to give futile treatments, leaving those who may benefit untreated. That is why the GMC, backed by the Department of Health, decided to challenge the original judgment, and won its appeal yesterday.
Yet Mr Burke only wanted to be fed and watered; surely this isn't treatment, it's a basic right? Indeed the duty of care to every patient demands they be fed and watered. Perhaps a fallacy in the debate has been to consider hydration and nutrition as if they are synonymous. Hydration is cheap, simple and usually easy to give - even at home, fluid can be dripped in subcutaneously if essential, although giving fluid wrongly can cause problems. But at times giving fluids will not alter the outcome at all. Artificial nutrition, however, is more complex: enteral feeding (into the gut) can cause diarrhoea and nausea, and intravenous feeding is very complex to manage.
Stopping futile interventions allows natural death to occur peacefully; it does not allow a lethal overdose to kill the patient. This is not euthanasia by the back door. The GMC itself told a House of Lords committee last year that "acting with the primary intention to hasten a patient's death would be difficult to reconcile with the medical ethical principles of beneficence or non-maleficence". And yesterday the judges wisely counselled "strongly against selective use of Munby J's judgment in future cases".
The law is clear: even when someone is dying, and if futile interventions are stopped, they must still be given all palliative care to ensure comfort until natural death occurs. The withholding or withdrawal of a futile intervention does not mean that the person is abandoned. Far from it - they must not be. They must have state-of-the-art palliative care, and we should all be campaigning for such care to be universally available.
So what of Mr Burke? He has championed all those facing their dying. He cannot demand at will, but he must receive all interventions, if wished, that are practical and life-sustaining. So, yes, he should be fed and watered if that is his wish, but if the feeding becomes futile, then the clinical team is not impelled to carry on at all costs. Stopping hydration is a more difficult decision than artificial feeding, for it is rarely burdensome per se.
What has this clarified? The patient's wishes must be considered, however ill they are. When treatments are futile they do not have to be given, but such decisions must not be taken lightly. Any treatment can be refused, and patients nearing death must be supported with the best of care until natural death occurs. Neither doctor nor patient holds the trump card; but when disease heralds a natural death, death can be dignified and peaceful. Yesterday's judgment is wise and considered.
· Baroness Finlay of Llandaff is professor of palliative medicine at Cardiff University
