BBC News Online disability affairs correspondent
The Court of Appeal is hearing a case brought by the General Medical Council (GMC), following an earlier High Court ruling in favour of a patient who wanted to ensure that doctors do not withdraw food and water once he is unable to communicate
Leslie Burke wants the right to decide about being fed
Leslie Burke had asked the court to rule that he, not a doctor, is best placed to decide whether his life should be prolonged by medical intervention.
He is now in his forties and has known since he was a teenager that he has a progressive condition which is very likely to mean that he will need artificial feeding and hydration - known as ANH.
What worried Mr Burke was the possibility that doctors could make a decision to withdraw ANH on the assumption that his quality of life as a disabled person was too low to merit prolonging it.
Mr Burke had argued that the existing guidance provided to doctors by the General Medical Council contravenes the Human Rights Act.
Following the High Court ruling, the GMC said its guidance needed further legal clarification - hence the appeal.
The Disability Rights Commission believes that the original decision last July tipped the balance in favour of the rights of patients rather than giving the final say to medical staff.
The DRC now thinks that doctors should follow three steps in order to decide whether a patient should receive life-saving treatment, including food and water.
- They should first ask whether providing life saving treatment would be of any benefit to the patient. If not, it should not be given.
- If the treatment would give some benefit, "competent" patients - those able to speak for themselves - should have the final say. If a patient is unable to make a decision, treatment should be provided unless their life would be "intolerable" from their point of view, not the doctor's. Any disagreement between medical staff and relatives should be referred to a court.
There should be no question of the availability of resources determining whether or not treatment is given.
For its part, the General Medical Council takes issue with the idea of a patient being able to require treatment.
It says that doctors have "a duty of care to offer treatments which a responsible body of medical opinion would consider appropriate in meeting the clinical and non-clinical needs of the patient".
The concern is that doctors and health service managers could be legally bound to give treatment which might not be in a patient's best interest.
The GMC is also concerned that "advance directives" - so-called living wills - may not take account of a person's condition when it has changed or deteriorated.
Finally, the GMC believes that the judge's conclusions about withdrawing food and water were not supported by expert evidence - so his decision was, effectively, wrong.
The "intolerability test" - as suggested by the Disability Rights Commission - is too narrow and subjective, according to the GMC.
It says doctors should try to reach a consensus about the best course of action with the patient's relatives.
If a dispute arises, the matter should be referred to the courts.
And it says that it explicitly instructs doctors not to be prejudiced in their decisions by a person's age or disability.
"The power of our guidance is that we're able to take away a doctor's right to practice if they don't follow it," said GMC policy adviser, Sharon Burton.
The right to choose
Such reassurance does not convince Dr Jane Campbell - a Disability Rights Commissioner who takes a close interest in 'right to life' issues.
When she was in hospital last year doctors twice said that they assumed that she would not want to be resuscitated should the need arise.
Jane Campbell - passionate about life
Literally afraid for her life, she kept herself awake for 48 hours.
"Giving a doctor the power of life or death over me is terrifying," she told BBC News Online.
"Society is so negative about disability that it encourages the view that being disabled is a good enough reason to end someone's life".
Dr Campbell also strongly opposes the view that disabled people should be assisted to commit suicide if they are unable to do this for themselves.
"We can only start to have that discussion once we live in a society where disabled people have equal value," she said.
"Until then the choice is heavily weighted towards death - it's just too easy to kill people off."
The Appeal Court judges will hear submissions from a number of other interested parties including the Official Solicitor, the Health Secretary, the Catholic Bishops Conference for England and Wales, Patient Concern and the World Federation of Doctors who Respect Human Life.
Their decision will probably not be known for some time.