Patient wins right-to-life ruling
BBC News | July 30, 2005
A patient has won his legal challenge to prevent doctors withdrawing life-prolonging treatment.
Leslie Burke, who has a degenerative brain condition, feared doctors could withdraw food and drink against his wishes when he can no longer speak.
He was concerned existing General Medical Council guidance on giving artificial nutrition could allow his wishes to be over-ruled.
The High Court ruling means that guidance will now have to be redrafted.
This ruling puts the power back where it belongs - with the person with the condition
Liz Sayce, Disability Rights Commission
The ruling will affect patients who are terminally ill and those with a disability who are unable to communicate their wishes about their treatment.
However, the GMC has said it is considering an appeal.
After the ruling, Mr Burke, 44, from Lancaster, who has cerebellar ataxia, told BBC News Online: "There have been times when I have found this quite painful, especially emotionally but it has all been worthwhile.
"I am quite happy at the moment as you can imagine."
HAVE YOUR SAY
Pressure to free up resources will always force doctors into these types of decisions
Dave, Newcastle Upon Tyne, England
Mr Burke, who is in a wheelchair, added: "The onus should be on helping people to live, not despatching people too early.
"The patient should have the last say."
He said he would not want feeding to be withheld, "even if it's only a matter of an extra couple of days, or a couple of weeks".
The GMC guidance covers situations where death is not imminent, but doctors believe a patient's condition is so severe, and their prognosis so poor, that artificial nutrition or hydration - giving water - causes more suffering than benefit.
It says that if patients are no longer able to communicate their views, doctors must judge what the patient would want, based on earlier discussions or written statements, and in consultation with patient's relatives.
But Mr Burke had argued that doctors may make a subjective judgement that the patient's quality of life was lower than another person's.
He argued the guidance should be changed so that doctors will have to presume a patient wants to carry on living.
Judge Mr Justice Munby said of the guidance: "The emphasis throughout ... is on the right of the competent patient to refuse treatment rather than on his right to require treatment.
"One can see the error creeping into the guidance in different ways."
He said he took issue, in a number of respects, with what the guidance said about the law.
The judgement provides helpful clarification in a number of important areas
General Medical Council statement
He added: "It follows, in my judgment, that the claimant has in principle established his right to relief."
That relief is expected to take the form of agreed declarations of a patient's wishes.
Liz Sayce of the Disability Rights Commission said it was a "great victory" for Mr Burke and other people with long-term conditions.
"Many people have been afraid that their own wishes to carry on having treatment could be over-ruled."
Ms Sayce added: "If someone is not disabled themselves, they can assume that a patient's quality of life looks really terrible, and it could be better to let them go.
"But the person might not think that at all."
She added: "This ruling puts the power back where it belongs - with the person with the condition."
In a statement, the GMC said: "We are glad that Justice Munby confirms, as we have said, that Mr Burke is entitled to have his wishes followed.
"As the case raises important points of principle, and there are some areas where we consider further clarification may be needed, we have sought leave to appeal."
It added that the judgement clarified "a number of important areas", including making it clear that doctors are not obliged to provide treatment that is futile, or places an intolerable burden on the patient.
"It is our stated position that in cases where there is disagreement over the care of a patient, the courts should be approached for a ruling."
Dr Michael Wilks, chair of the British Medical Association's medical ethics committee, said: "A decision to withhold or withdraw treatment from a patient who is dying or seriously ill is one of the most difficult and complex decisions a doctor can make.
"It is therefore absolutely essential for patients and their families, as well as for the health professionals providing care, that guidance be as clear as possible."
Dying man loses legal battle over right to be fed
London Telegraph | July 29, 2005
By Joshua Rozenberg
A man who is terminally ill and fears that doctors may allow him to die of thirst said he was "disappointed" yesterday after the Court of Appeal overturned an earlier judgment in his favour.
Last July, the High Court granted a challenge by Leslie Burke, 45, and declared that key sections of General Medical Council guidance on withdrawal of life-prolonging treatment were unlawful.
But yesterday three appeal judges allowed an appeal by the GMC against the ruling, setting aside six declarations by the trial judge. Permission to appeal was refused.
Mr Burke suffers from cerebellar ataxia, a progressively degenerative brain condition that follows a similar course to multiple sclerosis.
In an unusual move, Lord Phillips, the Master of the Rolls, issued a press release saying that "the fact that the appeal has been allowed does not mean that Mr Burke has lost".
Mr Burke will need artificial nutrition and hydration - known as ANH - when he loses the ability to swallow.
Lord Phillips explained that Mr Burke appeared to fear that ANH would be withdrawn before the final stages of his disease, when it would not be capable of prolonging his life. "If this is Mr Burke's fear, there is no reason for him to have it," Lord Phillips said.
"There are no grounds for thinking that those caring for such a patient would be entitled to or would take a decision to withdraw ANH in such circumstances."
The GMC's guidance did not suggest to the contrary, added Lord Phillips, who was sitting with Lords Justice Waller and Wall.
The judges added that, "where a competent patient indicates his or her wish to be kept alive by the provision of ANH, any doctor who deliberately brings that patient's life to an end by discontinuing the supply of ANH will not merely be in breach of duty but guilty of murder".
But they stressed that "in the last stage of life" ANH - far from prolonging life - may even hasten death.
"It is only in this situation that, assuming the patient remains competent, a patient's expressed wish that ANH be continued might conflict with the doctor's view that this is not clinically indicated."
Mr Justice Munby ruled in the High Court that the patient had the right to insist on ANH but the Court of Appeal disagreed.
"A patient cannot demand that a doctor administer a treatment which the doctor considers is adverse to the patient's clinical needs. That said, we consider the scenario that we have just described is extremely unlikely to arise."
The judges believed Mr Burke might have been persuaded by others to challenge aspects of the GMC guidance that had no relevance to someone in his position.
His solicitor, Paul Conrathe, said the ruling was a "technical victory for the GMC" but a "significant and practical victory for Leslie Burke and those in his situation".
Prof Sir Graeme Catto, the GMC president, said: "We have always said that causing patients to die from starvation and dehydration is absolutely unacceptable practice and unlawful. Today the court has reinforced our position."