Right to life-prolonging treatment upheld, but only if you can tell the doctor

Thursday 28th July 2005

A High Court ruling has created a Catch-22 situation for a disabled patient after upholding his right to life-saving treatment if he requests it, but allowing doctors to make the decision to remove it once he looses the ability to express his wishes or lacks capacity, says the Disability Rights Commission (DRC).

Les Burke, 45, who has Cerebella Ataxia, challenged doctors' guidelines (1), produced by the General Medical Council (GMC), on how they make the decisions to withhold or withdraw artificial food and water (ANH) in a judicial review last year. The DRC intervened in the case as an interested party.

Mr Burke is concerned that, because of his disability, he would reach a stage in his condition that meant he would no longer be able to swallow, talk or could loose capacity. At that point, doctors could decide to withhold, or withdraw, artificial food and water that would pro-long his life - even though he wants them to provide it. He would die of starvation and dehydration and he would be totally aware of what was happening to him.

The Court of Appeal ruling today underlines a competent patient's right to autonomy and self determination:

• that a patient can refuse treatment;
• that a patient cannot demand treatments that have no clinical benefit, but;
• a patient who, "regardless of the pain, suffering and indignity of his condition, makes it plain that he wishes to be kept alive", that for a "doctor deliberately to interrupt life-prolonging treatment in the face of a competent patient's expressed wish to be kept alive, with the intention of terminating the patient's life, would leave the doctor with no answer to the charge of murder." (para34 of the judgement.)

However, the DRC is very concerned that the Court of Appeal failed to take the opportunity to provide equal protection for patients that lack capacity (2). As the ruling stands, Mr Burke lawyers would be forced back to court to request ANH if he looses capacity. Mr Burke and the DRC are seeking leave to appeal to the House of Lords.

When a patient lacks capacity it will be up to the doctors to decide what is in the patient's 'best interests'. The DRC is extremely concerned that 'best interests' could be based on a doctor's discriminatory attitude or negative stereotypical assumptions of a disabled person's quality of life.  The GMC guidance also fails to set out clear tests and considerations for doctors to arrive at what is best for the patient (3).

Whilst the Appeal Court found that the GMC guidance did not breach the Human Rights Act, the ruling does say that the guidance issued to doctors advising under what circumstances it may be lawful to withdraw ANH from an incompetent patient "is not a clear or helpful description of the circumstances in which life is so burdensome that there is no duty to prolong it" (para 66).

The Appeal Court emphasised that disabled people should be "treated properly and in accordance with good practice, and that they will not be ignored or patronised because of their disability." (para 83). The DRC believes that without clear tests and considerations for doctors on the circumstances to give or withhold life-prolonging treatment that those laudable sentiments will remain just that.

Bert Massie. Chairman of the DRC, said:

"This ruling means that doctors will have to listen to whether you do, or do not want, life-prolonging treatment if you can make your choices clear. However, that safeguard, for the most fundamental of choices, has not been upheld for the most vulnerable people of all - those who cannot express their wishes.

"Many disabled people fear that some doctors make negative, stereotypical assumptions about their quality of life. This ruling will not allay many of their fears. If you become incompetent someone else can still decide what is burdensome and what is in your best interests."  

For further information contact Sue Pratt or Patrick Edwards at the DRC Press Office on 020 7543 7042 or 020 7543 7040. Out of office hours 07899 066 565.