Mr Burke has the degenerative brain condition spino-cerebellar ataxia. By his mid forties he was dependent on a wheelchair for mobility and suffered uncoordinated movements and impaired speech. Some years from now Mr Burke will lose all mobility and eventually he will lose his ability to speak, to gesture and even to swallow. He will then be able to communicate only with the aid of a computerised device and he will need to receive food and water by means of artificial nutrition and hydration (ANH). Mr Burke’s mental faculties are unaffected by the disease and will probably so remain until death is imminent. There will come a time at which, although fully conscious and rational, he will be unable to communicate even with a computerised aid. Towards the very end he will become semi-comatose before he dies. Mr Burke is understandably fearful of the final stages of his disease. In

particular, he is concerned about the periods when although conscious he will be able to communicate only by a computerised device and then unable to communicate at all. Mr Burke does not want ANH withdrawn before his death is imminent; he fears this could happen if doctors judge at an earlier point that prolonging his life is no longer worthwhile. His fear is not allayed by the guidance issued to doctors by the General Medical Council of the United Kingdom (GMC), according to which in a case such as Mr Burke’s it is the responsibility of the “consultant or general practitioner in charge of a patient’s care … to make the decision about whether to withhold or withdraw a life-prolonging treatment, taking account of the views of the patient or those close to the patient … ”1 The Guidance further instructs:

[w]here death is not imminent, it usually will be appropriate to provide artificial nutrition or hydration. However, circumstances may arise where you judge that a patient’s condition is so severe, and the prognosis so poor that providing artificial nutrition and hydration may cause suffering, or be too burdensome in relation to

the possible benefits. In these circumstances, as well as consulting the health care team and those close to the patient, you must seek a second or expert opinion from a senior clinician. … This will ensure that, in a decision of such sensitivity, the patient’s interests have been thoroughly considered … 2

To be sure these guidelines say that in coming to his or her decision the doctor should take the patient’s views into account and assess the patient’s best interests in consultation with others, but they do not refer to the patient’s wishes in this regard. Mr Burke will be able to make his wishes known by means of a computerised aid for some time after he loses the capacity to communicate by speech or gesture. He might also provide for the period when he will be unable to communicate at all, by making an advance statement that he does not want ANH withdrawn before his death is imminent. But the crucial question for Mr Burke is of course what status his wishes have in this regard. The answer to this question would be relatively straightforward if Mr Burke wanted ANH discontinued at some point. If he were to withdraw his consent to ANH, either while he can still communicate or at a later time by means of an advance statement made while he still has both the capacity to make rational decisions and the ability to communicate those decisions, this would have the force of a directive with which doctors would be obliged to comply. But Mr Burke does not wish to do this; on the contrary, he does not “consent” to the withdrawal of ANH before his death is imminent. Strictly speaking, a patient can either give or withhold consent to particular treatment only if that treatment is offered or provided. Here it might seem appropriate to invoke a distinction between a patient’s either accepting or refusing treatment on offer, as opposed to his requesting treatment. However, the characterisation of Mr Burke’s wish that ANH not be withdrawn before his death is imminent as (merely) a request for treatment on his part strikes at the heart of his concern. In 2004 Mr. Burke sought clarification of the circumstances in which

ANH could lawfully be withdrawn.3 He asked for declarative relief: that his wish that ANH not be withdrawn before his death is imminent should be enacted.4 The High Court decided in his favour. In a lengthy and detailed judgment that addressed a number of related matters, Mr Justice Munby ruled that on the specific issue of the continuation of ANH, Mr Burke’s wishes could have the same force as a refusal of treatment. This judgment was widely regarded as a strong defence of the view that the medical law and the human rights principles relevant to Mr Burke’s circumstances are grounded in the moral value of patient autonomy.5 But, if this was indeed a victory for the view that a competent patient can have a right to require the provision of particular medical treatment in specific circumstances, then it was short-lived.6 In 2005 the GMC brought an appeal which was upheld

and the decision in Burke [2004] reversed.7 Nevertheless, the Court of Appeal sought to assure Mr Burke that his fears are unfounded, declaring that:

[w]here 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. Where life depends upon the continued provision of ANH there can be no question of the supply of ANH not being clinically indicated unless a clinical decision has been taken that the life in question should come to an end. That is not a decision that can lawfully be taken in the case of a competent patient who expresses the wish to remain alive.8