R (Burke) v General Medical Council

JurisdictionEngland & Wales
CourtCourt of Appeal (Civil Division)
Judgment Date28 Jul 2005
Neutral Citation[2005] EWCA Civ 1003
Docket NumberCase No: C1/2004/2086

[2005] EWCA Civ 1003

[2004] EWHC 1879 (Admin)

IN THE SUPREME COURT OF JUDICATURE

COURT OF APPEAL (CIVIL DIVISION)

ON APPEAL FROM THE HIGH COURT (ADMINISTRATIVE COURT)

THE HONOURABLE MR JUSTICE MUNBY

Royal Courts of Justice

Strand, London, WC2A 2LL

Before

Lord Phillips of Worth Matravers, Mr

Lord Justice Waller and

Lord Justice Wall

Case No: C1/2004/2086

Between
The Queen on the Application of Oliver Leslie Burke
Respondent
and
The General Medical Council
Appellant
and
The Disability Rights Commission the Official Solicitor to the Supreme Court
Catholic Bishops' Conference of England and Wales
The Secretary of State for Health Patient Concern Medical Ethics Alliance Alert
British Section for the World Fedfration of Doctors Who Respect Human Life Intensive Care Society
Interveners

Phillip Havers QC & Dinah Rose (instructed by Messrs Field Fisher Waterhouse, Solicitors) for the Appellant

Richard Gordon QC & Clive Lewis (instructed by Messrs Ormerods, Solicitors) for the Respondent

David Wolfe (instructed by the Head of Legal Services) for the Intervener: the Disability Rights Commission

Robert Francis QC and Caroline Harry-Thomas (instructed by the Official Solicitor) for the Intervener: the Official Solicitor to the Supreme Court

Eleanor Sharpston QC & Angela Patrick for the Intervener: the Catholic Bishops' Conference of England and Wales

Philip Sales and Jason Coppel for the Intervener: the Secretary of State for Health

Leigh Day for the Intervener: Patient Concern

James Dingemans QC (instructed by Messrs Barlow Robbins, Solicitors) for the Interveners: Medical Ethics Alliance, ALERT, & the British Section of the World Federation of Doctors Who Respect Human Life

Messrs Mills & Reeve, Solicitors for the Interveners: the Intensive Care Society

Lord Phillips MR

This is the judgment of the court to which all members have contributed.

Introduction

1

With permission granted by the judge, the General Medical Council ('GMC') appeals against six declarations made by Munby J on 30 July 2004 in proceedings for judicial review instituted against it by Oliver Leslie Burke. Three of those declarations relate specifically to Mr Burke. The remaining three declare unlawful a number of paragraphs of a document of guidance published by the GMC in August 2002 entitled Withholding and Withdrawing Life-prolonging Treatment: Good Practice and Decision Making ('the Guidance'). We have set out the relevant passages from the Guidance in an appendix to this judgment. The appeal raises, as its central issue, the circumstances in which artificial nutrition and hydration ('ANH') can be withdrawn from a patient.

Mr Burke's predicament

2

Mr Burke is 45 years of age. He suffers from a congenital degenerative brain condition known as spino-cerebellar ataxia, which currently confines him to a wheelchair. The judge described the course that his illness is likely to follow in these terms:

"3. 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. "

4. 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.

5. 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."

3

The judge elaborated on this picture a little later in his judgment

"48. In the present case I am concerned with a patient who at present is manifestly competent and who, however distressing his condition and his symptoms, is likely to remain competent, with his senses and his awareness substantially unimpaired, long into the terminal stages of his illness, indeed in all probability until he is fairly close to death. The evidence makes clear that until his final days the claimant, although by then being kept alive by ANH, will retain both his capacity to make decisions for himself and an ability to communicate his wishes, albeit probably via a computerised device. During his final days he will lose the ability to communicate, although not at first an awareness and appreciation of his surroundings and predicament. He will then lapse into a semi-comatose condition before dying."

4

No one contemplating Mr Burke's predicament could fail to feel for him the greatest sympathy and, in our case, that sympathy was augmented by awareness of Mr Burke's dignified presence in court during the hearing of this appeal.

Mr Burke's concern

5

The judge described Mr Burke's concern as follows:

"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."

This reflected a passage in the annexe to Mr Burke's claim form, which stated:

"He is concerned that doctors will determine for him whether or not he ought to continue to live and whether or not a decision should be taken to withhold or withdraw life-prolonging treatment in the form of artificial nutrition and hydration."

6

In a witness statement Mr Burke described how, at the Lancaster Disablement Information and Support Centre ('DISC'), he became aware of the Guidance. He went on to say:

"6. I understand that the General Medical Council is a charity whose purpose is the protection by promotion of the health and safety of the community. The role of the GMC is to protect patients. I believe that the said guidance that has been issued fails to offer such protection. I am concerned that too much power is placed in the hands of the medical profession. Paragraph 32 of the said guidance materially provides:

"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 as set out in paragraphs 41–48 and 53–57."

7. I wish to be involved in deciding the treatment I receive as much as possible. I am aware that as my condition deteriorates it is highly likely that I will eventually lose capacity. The guidance gives no advice on how the question of incapacity is to be determined.

8. I am further concerned that even if my death is not imminent, a doctor may be able to withdraw artificial nutrition and hydration. Paragraph 81 materially provides:

"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, the prognosis so poor, that providing artificial nutrition or hydration may cause suffering or to be too burdensome in relation to the possible benefits."

9. I anticipate that the progression of my condition will result in me having more suffering than I do at the present time. I am very worried that artificial nutrition and hydration could be withdrawn.

10. I am also concerned that there appears to be no legal forum within which my rights can ultimately be protected. There is no obligation upon a doctor to seek the advice of a Court as to whether and when my life should be ended."

7

Neither the judge's summary of Mr Burke's concern, nor his own statement, sets out with clarity the precise nature of his concern. In order to appreciate this it is necessary to identify with some nicety the different circumstances in which, in theory at least, ANH might be withdrawn from a patient.

8

The body requires food and water to live. The evidence was that, if deprived of food and water, a patient will die of the lack of these in approximately 14 days. A patient who cannot or will not swallow food and water may be kept alive by ANH. But the administering of ANH will not keep a patient alive for ever. Ultimately the patient will die, even if ANH continues to be administered. Where a patient is in the final stages of a terminal disease the administration of ANH will cease to prolong life, and in some cases may even hasten death.

9

It is important to distinguish between the withdrawal of ANH...

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