R (Burke) v General Medical Council

JurisdictionEngland & Wales
JudgeMr Justice Munby,MR JUSTICE MUNBY
Judgment Date30 July 2004
Neutral Citation[2004] EWHC 1879 (Admin)
Docket NumberCase No: CO/4038/2003
CourtQueen's Bench Division (Administrative Court)
Date30 July 2004

[2004] EWHC 1879 (Admin)




Royal Courts of Justice

Strand, London, WC2A 2LL


The Honourable Mr Justice Munby

Case No: CO/4038/2003

R (on The Application Of Oliver Leslie Burke)
The General Medical Council
The Disability Rights Commission
Interested Party
The Official Solicitor To The Supreme Court

Mr Richard Gordon QC and Mr Clive Lewis (instructed by Coningsbys) for the claimant

Ms Dinah Rose (instructed by Field Fisher Waterhouse) for the defendant

Mr David Wolfe (instructed by the Head of Legal Services) for the interested party

Mr Robert Francis QC (instructed by the Official Solicitor) for the intervener

Mr Justice Munby


The inter-relationship between Articles 2, 3 and 8 122


The claimant, Oliver Leslie Burke, suffers from cerebellar ataxia. There will inevitably come a time, as his condition worsens, when he will need – and he would wish in those circumstances – to receive food and water by artificial means. (This is conventionally referred to as artificial nutrition and hydration, or ANH, though it will be appreciated that what is artificial is not the food and water but the means by which they are delivered.) He seeks clarification as to the circumstances in which ANH may lawfully be withdrawn. He contends that the relevant guidance (the Guidance) issued by the General Medical Council (GMC) – 'Withholding and Withdrawing Life-prolonging Treatments: Good Practice in Decision-making' – is in certain respects unlawful, being, as he would have it, incompatible with his rights under Articles 2, 3, 6, 8 and 14 of the European Convention for the Protection of Human Rights and Fundamental Freedoms (the Convention). He seeks judicial review of the Guidance and claims certain declaratory relief.


The case plainly raises issues of great importance. Central to those issues are fundamentally important questions of medical law and ethics. In particular the case focuses on the extent to which we should respect the patient's autonomy: the personal autonomy which our law has now come to recognise demands that the choice of medical treatment – the choice of how we are to live and how we are to die – should be left to the individual: see R (Smeaton) v Secretary of State for Health [2002] EWHC 610 (Admin), [2002] 2 FLR 146, at para [397]. To the claimant these issues are quite literally matters of life and death. They are issues which potentially affect us all. For all of us must die and any of us may at some time need ANH.


The claimant


The claimant is a 44 year old man who suffers from a congenital degenerative brain condition known as spino-cerebellar ataxia with peripheral neuropathy. This is a progressively degenerative condition that follows a similar course to multiple sclerosis. He was diagnosed in 1982. He suffers very serious physical disabilities but has retained his mental competence and capacity. He has gradually lost the use of his legs and is now virtually wholly dependent on a wheelchair for mobility. He has uncoordinated movements and his condition also affects his speech, but his mental ability is not impaired.


By reason of his condition there will come a time when the claimant will be entirely dependent on others for his care and indeed for his very survival. In particular he will lose the ability to swallow and will require ANH by tube to survive.


The medical evidence indicates that the claimant is likely to retain full cognitive faculties even during the end stage of this disease and that he will retain, almost until the end, insight and awareness of the pain, discomfort and extreme distress that would result from malnutrition and dehydration. (If food and water were to be withheld he would die of dehydration after some two to three weeks.) He is also likely to retain the capacity to experience the fear of choking which could result from attempts at oral feeding. The medical evidence also indicates that the claimant is unlikely to lose his capacity to make decisions for himself and to communicate his wishes until his death is imminent. An eminent consultant in neurology and rehabilitation medicine describes what he calls "the likely scenario during the final days of Mr Burke's life" as follows:

"he will by then be bed bound and communicating via a computerised device. He would then become unwell with either a chest or urinary tract infection and within a few days would become increasingly obtunded and lose the ability to use his communication aid. If medical treatment for the underlying infection is unsuccessful he would become progressively weaker and semi-comatose and then succumb."


The claimant wants to be fed and provided with appropriate hydration until he dies of natural causes. He does not want ANH to be withdrawn. He does not want to die of thirst. He does not want a decision to be taken by doctors that his life is no longer worth living.

The GMC Guidance


'Withholding and Withdrawing Life-prolonging Treatments: Good Practice in Decision-making' was published in August 2002. It is right to emphasise at the outset that it is the product of a substantial consultation process in the course of which the GMC received advice from a wide range of medical, legal and ethical experts and from representatives of particular religious and other groups, including patients and disabled people. A working party was established in 1999. A consultative draft was published in May 2001. A consultation conference was held in July 2001. By the time the consultation period ended on 31 July 2001 over 700 responses had been received. An internal conference was held in February 2002. Following further drafting and re-drafting the Guidance was published, as I have said, in August 2002.


In his evidence, Sir Cyril Chantler, who was Chairman of the GMC's Committee on Standards of Professional Conduct and on Medical Ethics between 1996 and October 2002, and who in that capacity was closely involved in the development of the Guidance, says:

"the drafting of the Guidance involved very extensive consultation with medical, patient, legal, religious and other interested groups and individuals. The final version could not accord with all points of view expressed during the consultation. However, those views were given careful consideration. The GMC believes that the Guidance reflects the broad consensus, as so far established, within the Council, the profession and public about what can be regarded as good practice in this area of decision-making."


The Guidance is a lengthy document, running to over twenty pages. It is not confined to ANH but extends to life-prolonging treatments generally. It requires to be read as a whole. I have extracted, and set out in an Appendix, those parts of the Guidance that are most important for present purposes.


The claimant's concerns focus in particular on paragraphs 32, 38, 81 and 82 of the Guidance. Paragraph 32 provides that:

"If you are the consultant or general practitioner in charge of a patient's care, it is your responsibility 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… Exceptionally, in an emergency where the senior clinician cannot be contacted in time, if you are an appropriately experienced junior hospital doctor or deputising general practitioner you may take responsibility for making the decision, but it must be discussed with the senior clinician as soon as possible (emphasis added)."


Paragraph 38 provides that:

"Always consult a clinician with relevant experience (who may be from another discipline such as nursing) in cases where:

• You and the health care team have limited experience of a condition.

• You are in doubt about the range of options, or the benefits, burdens and risks of a particular option for the individual patient.

•You are considering withholding or withdrawing artificial nutrition or hydration from a patient who is not imminently dying, although in a very serious condition, and whose views cannot be determined (see paragraph 81 below).

• You and other members of the health care team have a serious difference of opinion about the appropriate options for a patient's care (emphasis added)."


Paragraph 81 provides that:

"Where patients have capacity to decide for themselves, they may consent to, or refuse, any proposed intervention of this kind. In cases where patients lack capacity to decide for themselves and their wishes cannot be determined, you should take account of the following considerations:

Where there is a reasonable degree of uncertainty about the likely benefits or burdens for the patient of providing either artificial nutrition or hydration, it may be appropriate to provide these for a trial period with a pre-arranged review to allow a clearer assessment to be made.

Where death is imminent, in judging the benefits, burdens or risks, it usually would not be appropriate to start either artificial hydration or nutrition, although artificial hydration provided by the less invasive measures may be appropriate where it is considered that this would be likely to provide symptom relief.

Where death is imminent and artificial hydration and/or nutrition are already in use, it may be appropriate to withdraw them if it is considered that the burdens outweigh the possible benefits to the patient.

Where 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,...

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