BBC News Online disability affairs reporter
A patient has won his legal battle to ensure that doctors do not withdraw nutrition against his wishes when he is no longer able to communicate.
Leslie Burke wants the right to decide about being fed
Leslie Burke was effectively asking 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.
What worried Mr Burke was the possibility that doctors could make a decision to withdraw artificial nutrition and hydration - or ANH - on the assumption that his quality of life as a disabled person was too low to merit prolonging it.
Mr Burke argued that the existing guidance provided to doctors by the General Medical Council contravenes his rights under the Human Rights Act.
Following the High Court ruling, that guidance will have to be redrafted.
The Disability Rights Commission said the outcome would have repercussions for the rights of all disabled people who have degenerative conditions.
The DRC wants guidance about 'quality of life' to be removed from the guidelines.
It says that too much scope is allowed for a doctor's personal opinion to influence the outcome of a decision about providing ANH.
Mr Burke wants all decisions about withdrawing and withholding treatment to be referred to the courts.
But the DRC thinks that this is unnecessary: it wants the courts to intervene only when there is a disagreement between the patient and their doctor.
The organisation thinks that decisions about prolonging a person's life need to be considered according to four basic principles.
The DRC's four principles
If a person is able to make a decision and does not want ANH to be given their wish should be respected
When a patient and their doctor disagree, the dispute must be settled by a court
When there is full agreement on withdrawing the ANH, doctors must use the 'intolerability test' which determines whether giving treatment would make a person's life intolerable.
Crucially, this must be considered from the patient's perspective not the doctor's. The intolerability test is currently used by the courts and the DRC believes it is a much higher threshold for withdrawing treatment than the current guidelines used by doctors
In an emergency situation, the DRC says that a patient must receive treatment until their condition becomes stable
For its part, the General Medical Council say although in law a doctor makes the decision, they are expected to reach it based on a consensus of opinion.
The GMC advises doctors to try to reach a consensus, obtain a second opinion if necessary, and to apply for a court ruling when there is a significant disagreement about a patient's best interests.
"The issue about withdrawing life-prolonging treatments is fundamentally about one of two approaches," GMC policy adviser, Sharon Burton, told BBC News Online.
"For some people it means hastening or indeed causing death. For others, not providing treatments like ANH is an acceptance that someone is dying but the cause of death is the underlying medical condition not the decision to withhold treatment."
The GMC insists that the basis for decision making around life-prolonging treatments is the patient's right to decide.
And it explicitly instructs doctors not to be prejudiced in their decisions by a person's age or disability.
Problems have arisen, according to Sharon Burton, when doctors fail to follow GMC guidelines.
"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," she said.
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."