UK: Life Prolonging Treatment

Originally published in September 2004.

The claimant, Leslie Burke, suffers from cerebellar ataxia, a progressively degenerative disorder that follows a similar course to multiple sclerosis and will necessitate artificial nutrition and hydration (ANH) as his condition worsens. Eventually, he will lose the ability to swallow. Thereafter, he will only survive if he is fed through a tube. Mr Burke was concerned with the wording of guidelines issued by the GMC entitled ‘Withholding and Withdrawing Life Prolonging Treatments: Good Practice and Decision Making’. His worry was that the emphasis throughout is on the right of the competent patient to refuse treatment rather than his right to require treatment.

The case was pleaded under articles 2 (right to life), 3 (prohibition against inhuman and degrading treatment) and 8 (right to a family life) of the European Convention on Human Rights (ECHR), incorporated in English law by the Human Rights Act 1998. Once a patient is admitted to a NHS hospital a duty of care arises to provide treatment, notwithstanding that the patient is competent or incompetent, conscious or unconscious. The doctor and the hospital are then under a continual obligation that cannot lawfully be shared unless arrangements are made for someone else to take over the responsibility. The duty to care is to be carried out pursuant to what is in the best interests of the patient.

The judgment confirms that sections of the GMC’s guidance on the withdrawal of life

prolonging treatment are unlawful. It provides comprehensive instructions and guidance on correct and lawful procedures for a doctor treating a patient in an analogous situation to that of Mr Burke. It also confirms that health professionals must do as much as possible to preserve life and that there should not be a different approach to a less able or incompetent patient. It includes the following points: -

• The evaluation of a patient's best interests involves a welfare appraisal in the widest sense, taking into account, where appropriate, ethical, social, moral, and emotional considerations.
• Doctors can claim no special expertise on the many non medical matters. Medical opinion can never be determinative of what is in a patient's best interests.
• It is for the patient, if competent, to determine what is in his own best interests. If the patient is incompetent and has left no binding and effective advance directive then it is for the Court to decide what is in his best interests.
• The right of self determination and dignity are fundamental rights protected by Articles 3 and 8 of the ECHR. Article 8 embraces such matters as how one chooses to pass the closing days and moments of one's life and how one manages one's death. Dignity interests protected by the ECHR include the preservation of mental stability, the right to die with dignity, and the right to be protected from treatment or from a lack of treatment, which will result in a patient dying in avoidably distressing circumstances.
• An enhanced degree of protection is called for under Articles 3 and 8 in the case of the vulnerable.
• Treatment is capable of being degrading, whether or not there is awareness on the part of the patient.
• Failure to provide life prolonging treatment in circumstances exposing the patient to ‘inhuman or degrading treatment’ will in principle involve a breach of Article 3. For example, there will be a prima facie breach of Article 3 if care is removed in circumstances where this will subject him to acute mental and physical suffering and lead to him dying in unavoidably distressing circumstances.
• If the patient is competent (or although incompetent has made an advance directive which is both valid and relevant to the treatment in question) his decision as to where his best interests lie and as to what life prolonging treatment he should or should not have, is in principle determinative. The sanctity of life takes second place to personal autonomy.
• The personal autonomy protected by Article 8 means that in principle it is for the competent patient, and not his doctor, to decide what treatment should or should not be given.
• If the patient is incompetent, the test is best interests. There is a very strong presumption in favour of taking all steps which will prolong life. In the context of life prolonging treatment the touchstone of best interests is intolerability. If life prolonging treatment is providing some benefit it should be provided unless the patient's life, if thus prolonged, would from the patient's point of view be intolerable.

The judgment concluded as follows on the specific question of withdrawing ANH:-

• If the patient is competent (or, although incompetent, has made an advance directive which is both valid and relevant to the treatment in question) his refusal to accept ANH is determinative. Similarly, his decision to require the provision of ANH which he believes is necessary to protect him from what he sees as acute mental and physical suffering is also determinative.
• Withdrawal of ANH, in contravention of a patient's wishes, before the claimant finally lapses into a coma would involve clear the patient would be exposed to acute mental and physical suffering.
• The position of an incompetent patient is likely in practical terms to be the same. Thus, if ANH provides some benefit it should be given unless the patient's life, if thus prolonged, would subjectively be intolerable.
• Where it is proposed to withhold or withdraw ANH the prior authorisation of the Court is required in certain circumstances. For example: where there is evidence that the patient when competent would have wanted ANH to continue in the relevant circumstances; where there is evidence that the patient resists or disputes the proposed withdrawal of ANH; and where persons entitled to have their views taken into account assert that withdrawal of ANH is contrary to the patient’s wishes or not in the patient’s best interests. 

© RadcliffesLeBrasseur

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