COURT OF APPEAL (CIVIL DIVISION)
ON APPEAL FROM THE HIGH COURT (ADMINISTRATIVE COURT)
THE HONOURABLE MR JUSTICE MUNBY
Strand, London, WC2A 2LL
B e f o r e :
LORD JUSTICE WALLER
LORD JUSTICE WALL
| The Queen on the Application of OLIVER LESLIE BURKE
|- and -
|THE GENERAL MEDICAL COUNCIL
THE DISABILITY RIGHTS COMMISSION
THE OFFICIAL SOLICITOR TO THE SUPREME COURT
CATHOLIC BISHOPS' CONFERENCE OF ENGLAND AND WALES
THE SECRETARY OF STATE FOR HEALTH
MEDICAL ETHICS ALLIANCE
BRITISH SECTION FOR THE WORLD FEDFRATION OF DOCTORS WHO RESPECT HUMAN LIFE
INTENSIVE CARE SOCIETY
Smith Bernal Wordwave Limited, 190 Fleet Street
London EC4A 2AG
Tel No: 020 7421 4040, Fax No: 020 7831 8838
Official Shorthand Writers to the Court)
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
Crown Copyright ©
Lord Phillips MR
This is the judgment of the court to which all members have contributed.
Mr Burke's predicament
"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."
"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."
Mr Burke's concern
"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. 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."
"(1) A declaration that paragraphs 32, 38 and 81 of the Guidance issued by the General Medical Council entitled "Withholding and Withdrawing Life-Prolonging Treatment: Good Practice in Decision-Making" are unlawful as the advice contained in those paragraphs is incompatible with Articles 2, 3, 6, 8 and 14 of the European Convention on Human Rights.
(2) A declaration that a patient is entitled to have the question of whether or not care in the form of artificial nutrition and hydration withdrawn resolved by a court or tribunal in accordance with Article 6(1) ECHR.
(3) A declaration that, where death is not imminent, the withholding or withdrawal of artificial nutrition and hydration, leading to death by starvation or thirst, not through natural causes would necessarily be a breach of the Claimant's rights under Article 2, 3 and 8 of ECtHR and would be unlawful under domestic law.
(4) A declaration that where death is imminent, the withholding or withdrawal of artificial nutrition or hydration with the result that he would die of starvation or thirst, not of natural causes, would necessarily:
(1) be a breach of his rights under Article 2, 3 and 8 and would be unlawful under domestic law or
(2) alternatively would be a breach of his rights under Article 2, 3 and 8 and unlawful under domestic law unless there were some compelling interest that meant that it could not be in his interests for that treatment to be provided and that there was a compelling interest that he should be left to dies of starvation and thirst rather than natural causes."
"(1) the withholding or withdrawal of artificial nutrition and hydration, leading to death by starvation or thirst would be a breach of Mr Burke's rights under Articles 2, 3, and 8 and would be unlawful under domestic law;
(2) where a competent patient requests or where an incompetent patient has, prior to becoming incompetent, made it clear that they would wish to receive artificial nutrition and hydration, the withholding or withdrawal of artificial nutrition and hydration, leading to death by starvation or thirst would be a breach of their rights under Articles 2, 3 or 8 and would be unlawful under domestic law;
(3) the refusal of artificial nutrition and hydration to an incompetent patient would be a breach of Article 2 unless providing such artificial nutrition and hydration would amount to degrading treatment contrary to Article 3;
(4) the Guidance is unlawful in so far as it fails it safeguard the rights of patients under Articles 2, 3 and 8;
(5) paragraph 81 of Guidance is unlawful as it is incompatible with Article 2, 3 and 8 and domestic law;
(6) withdrawal of artificial nutrition and hydration from a non-PVS patient without first seeking a court ruling in circumstances where artificial nutrition and hydration would not be withdrawn from a PVS patient is unlawful discrimination contrary to Article 14;
(7) paragraph 81 of Guidance is unlawful as it is incompatible with Article 14;
(8) where there is disagreement between a competent patient, or relatives or carers of an incompetent patient, as to whether artificial nutrition should be withdrawn, the disagreement should be resolved by application to a court or, alternatively, that those proposing to withdraw artificial nutrition and hydration should inform the patient or relatives and carers and afford them sufficient time before withdrawal of artificial nutrition and hydration to enable them to take steps to secure their rights under Articles 2, 3 and 8."
"4(a) It is the wish of the Official Solicitor to assist the Court as much as possible in the resolution of this case. To this end he will offer submissions in relation to various issues potentially raised by it. However, he will offer only limited comments on the particular merits of the Claimant's case for a number of reasons:
(i) The Claimant is clearly mentally competent at the moment, is not receiving or in need of ANH. Therefore, as matters stand, the question does not arise as to whether a decision to withdraw ANH should be made with or without his consent;
(ii) The medical evidence adduced by Mr Burke does not suggest that he will lose the mental capacity to consent to or refuse treatment.
(iii) There is no evidence that any medical practitioner likely to treat the Claimant and to be in a position to administer, withhold or withdraw ANH intends to apply the GMC guidance in the manner feared by the Claimant.
(iv) On the evidence produced so far, the Official Solicitor is of the view that, were he to be called upon to express a view now on the matter, he would not consider it in the Claimant's best interests for ANH to be withdrawn if he continued to express a wish that it be continued. However, if the treatment required by the Claimant becomes a matter of dispute or concern at a time when he is mentally incapable of taking decisions for himself, the Official Solicitor may well become involved on behalf of the Claimant in declaratory or other proceedings. At such a time the Official Solicitor would be in the position to undertake the necessary inquiries with regard to the Claimant's best interests and his previously expressed wishes to an extent that is neither practicable nor desirable at this stage. The issues would have to be judged on the circumstances at the time.
(v) In these circumstances there is some danger to the Claimant in seeking so to define the law in his case as to prevent or inhibit what might be thought to be highly desirable treatment or changes in treatment at a later stage."
"For these reasons the Official Solicitor, unless requested to do otherwise by the Court, intends to restrict himself to the consideration of the wider issues raised by the Claimant's application, which it is suggested, are of general public importance."
" the occasions of a departmental non-statutory publication raising a clearly defined issue of law, unclouded by political, social or moral overtones, will be rare. In cases where any proposition of law implicit in a departmental advisory document is interwoven with questions of social and ethical controversy, the court should, in my opinion, exercise its jurisdiction with the utmost restraint, confine itself to deciding whether the proposition of law is erroneous and avoid either expressing ex cathedra opinions in areas of social and ethical controversy in which it has no claim to speak with authority or proffering answers to hypothetical questions of law which do not strictly arise for decision."
The judge himself cited this passage with approval. Unfortunately he did not follow it.
"(1) Any decision by the claimant while competent, or contained in a valid advance directive, that he requires to be provided with artificial nutrition and hydration is determinative that such provision is in the best interests of the claimant at least in circumstances where death is not imminent and the claimant is not comatose;
(2) Where the claimant has decided, or made a valid advance directive, that he wishes to be provided with artificial nutrition and hydration, any refusal by a hospital who has assumed the care of the claimant to arrange for the provision of such artificial nutrition and hydration at any time until the claimant's death is imminent and the claimant is comatose would be a breach of the claimant's rights under Article 3 and Article 8 of the European Convention on Human Rights;
(3) Where the claimant has decided, or made a valid advance directive, that he wishes to be provided with artificial nutrition and hydration and where a doctor has assumed the care of the claimant, the doctor must either continue to arrange for the provision of artificial nutrition and hydration or arrange for the care of the claimant to be transferred to a doctor who will make such arrangements, in the period until the claimant's death is imminent and the claimant is comatose;
(4) Paragraph 81 of the Guidance issued by the General Medical Council entitled "Withholding and Withdrawing Life-prolonging Treatment: Good Practice in Decision-making" is unlawful in that (a) it fails to recognise that the decision of a competent patient that artificial nutrition and hydration should be provided is determinative of the best interests of the patient (b) it fails to acknowledge the heavy presumption in favour of life-prolonging treatment and that such treatment will be in the best interests of a patient unless the life of the patient, viewed from that patient's perspective, would be intolerable and (c) provides that it is sufficient to withdraw artificial nutrition and hydration from a patient who is not dying because it may cause suffering or be too burdensome in relation to the possible benefits;
(5) Paragraphs 13, 16, 32 and 42 of the Guidance issued by the General Medical Council entitled "Withholding and Withdrawing Life-prolonging Treatment: Good Practice in Decision-making" are unlawful as they fail to recognise that the decision of a competent patient on whether artificial nutrition and hydration is determinative in principle of whether or not such treatment is in the patient's best interest;
(6) Paragraphs 38 and 82 of the Guidance issued by the General Medical Council entitled " Withholding and Withdrawing Life-prolonging Treatment: Good Practice in Decision-making" are unlawful as they fail to reflect the legal requirement that in certain circumstances artificial nutrition and hydration may not be withdrawn without prior judicial authorisation but provide that it is sufficient to consult a clinician with relevant experience or to take legal advice.
The first three declarations were extraordinary in nature in that they did not purport to resolve any issues between the parties, but appeared to be intended to lay down propositions of law binding on the world.
The declarations as a whole go far beyond the current concerns of Mr Burke in that (1) they deal with the position of an incompetent patient, when, on the evidence, Mr Burke is likely to remain competent until the final stages of his illness and (2) they address the effect of an advance directive, sometimes referred to as 'a living will', when Mr Burke has made no such directive. We do not overlook the fact that there is likely to be, some years hence, a short period before Mr Burke lapses into his final coma when he will be sentient but unable to communicate his wishes. The implications of withdrawal of ANH at that stage may depend critically on the effect, if any, that this will have on easing his final conscious moments. The appropriate approach to Mr Burke's treatment at that final stage may depend upon any informed wishes that he may have expressed after explanation of these implications and of the options for therapeutic care that will be available. We do not understand Mr Burke's current concerns to relate to this stage and, if they do, we think that they are premature.
Our approach to this appeal
Concern at the possible withdrawal of ANH from Mr Burke while he is competent and expresses the wish to continue to receive ANH
i) Mr Burke's decision that he requires ANH is determinative that this is in his best interests (Declaration 1).
ii) Withdrawal of ANH contrary to Mr Burke's expressed wish would breach his rights under Article 3 and 8 of the European Convention on Human Rights ('the Convention') (Declaration 2).
iii) Where Mr Burke expresses that he wishes to receive ANH a doctor who has assumed his care must either provide it or arrange for someone else to provide it (Declaration 3)
iv) Paragraphs 13, 16, 32 and 42 and 81 of the Guidance are unlawful in that they fail to recognise that a decision of a patient that he wishes to receive ANH is in his best interests (Declarations 4 and 5)
We will deal with each of these in turn.
Best interests and autonomy
Would withdrawal of ANH contrary to the wishes of Mr Burke infringe Articles 3 and 8 of the Convention?
"175. Whether there will in fact be a breach either of Article 3 or of Article 8 if ANH is withdrawn from the claimant once he has entered into the third and final stage and has finally lapsed into a coma is not a matter capable of decision this far in advance of an event which, as I understand it, is unlikely to occur for many years yet. I decline therefore to express any conclusion on the point.
176. Much may turn upon the precise terms of the claimant's advance directive. More importantly, much will depend upon the claimant's condition once that stage is reached. It may be that by then and on the evidence before me we are probably talking here only about the last few hours of life ANH will be serving absolutely no purpose other than the very short prolongation of the life of a dying patient who has slipped into his final coma and who lacks all awareness of what is happening. In that event it might very well be said that the continuation of ANH would be bereft of any benefit at all to the claimant and that it would indeed be futile."
"162. Article 2 does not entitle anyone to continue with life-prolonging treatment where to do so would expose the patient to "inhuman or degrading treatment" breaching Article 3. On the other hand, a withdrawal of life-prolonging treatment which satisfies the exacting requirements of the common law, including a proper application of the intolerability test, and in a manner which is in all other respects compatible with the patient's rights under Article 3 and Article 8 will not, in my judgment, give rise to any breach of Article 2."
The doctor with care of Mr Burke must either comply with his wish to be given ANH or arrange for another doctor to do so
The lawfulness of paragraphs 13, 16, 32, 42 and 81 of the Guidance
Concerns about the wider implications of Munby J's judgment
i) The right of a patient to select the treatment that he will receive;
ii) The circumstances in which life-prolonging treatment can be withdrawn from a patient who is incompetent;
iii) The duty to seek the approval of the court before withdrawing life-prolonging treatment.
The right of a patient to select the treatment that he will receive
"If the patient is competent (or, although incompetent, has made an advance directive which is both valid and relevant to the treatment in question) there is no difficulty in principle: the patient decides what is in his best interests and what treatment he should or should not have."
i) The doctor, exercising his professional clinical judgment, decides what treatment options are clinically indicated (i.e. will provide overall clinical benefit) for his patient.
ii) He then offers those treatment options to the patient in the course of which he explains to him/her the risks, benefits, side effects, etc involved in each of the treatment options.
iii) The patient then decides whether he wishes to accept any of those treatment options and, if so, which one. In the vast majority of cases he will, of course, decide which treatment option he considers to be in his best interests and, in doing so, he will or may take into account other, non clinical, factors. However, he can, if he wishes, decide to accept (or refuse) the treatment option on the basis of reasons which are irrational or for no reasons at all.
iv) If he chooses one of the treatment options offered to him, the doctor will then proceed to provide it.
v) If, however, he refuses all of the treatment options offered to him and instead informs the doctor that he wants a form of treatment which the doctor has not offered him, the doctor will, no doubt, discuss that form of treatment with him (assuming that it is a form of treatment known to him) but if the doctor concludes that this treatment is not clinically indicated he is not required (i.e. he is under no legal obligation) to provide it to the patient although he should offer to arrange a second opinion.
The position of the incompetent patient
"There is a very strong presumption in favour of taking all steps which will prolong life, and save in exceptional circumstances, or where the patient is dying, the best interests of the patient will normally require such steps to be taken. In case of doubt that doubt falls to be resolved in favour of the preservation of life. But the obligation is not absolute. Important as the sanctity of life is, it may have to take second place to human dignity. In the context of life-prolonging treatment the touchstone of best interests is intolerability. So 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. "
"where the patient is dying, the goal may properly be to ease suffering and, where appropriate, to 'ease the passing' rather than to achieve a short prolongation of life."
We agree. We do not think it possible to attempt to define what is in the best interests of a patient by a single test, applicable in all circumstances. We would add that the disturbing cases referred to in paragraphs 57 and 58, if correctly reported, were cases where the doctors appear to have failed to observe the Guidance. They are not illustrative of any illegality in the Guidance. The Guidance expressly warns against treating the life of a disabled patient as being of less value than the life of a patient without disability, and rightly does so.
Is there a legal requirement to obtain court authorisation before withdrawing ANH?
"(g) Where it is proposed to withhold or withdraw ANH the prior authorisation of the court is required as a matter of law (and thus ANH cannot be withheld or withdrawn without prior judicial authorisation): (i) where there is any doubt or disagreement as to the capacity (competence) of the patient; or (ii) where there is a lack of unanimity amongst the attending medical professionals as to either (1) the patient's condition or prognosis or (2) the patient's best interests or (3) the likely outcome of ANH being either withheld or withdrawn or (4) otherwise as to whether or not ANH should be withheld or withdrawn; or (iii) where there is evidence that the patient when competent would have wanted ANH to continue in the relevant circumstances; or (iv) where there is evidence that the patient (even if a child or incompetent) resists or disputes the proposed withdrawal of ANH; or (v) where persons having a reasonable claim to have their views or evidence taken into account (such as parents or close relatives, partners, close friends, long-term carers) assert that withdrawal of ANH is contrary to the patient's wishes or not in the patient's best interests."
"The advent of the Human Rights Act 1998 has enhanced the responsibility of the court to positively protect the welfare of these patients and, in particular, to protect the patient's right to respect for her private and family life under Art 8(1) of the European Convention ."
"the regulatory framework in the respondent State is firmly predicated on the duty to preserve the life of a patient, save in exceptional circumstances. Secondly, that same framework prioritises the requirement of parental consent and, save in emergency situations, requires doctors to seek the intervention of the courts in the event of parental objection."
"For the court, the applicants' contention in reality amounts to an assertion that, in their case, the dispute between them and the hospital staff should have been referred to the courts and that the doctors treating the first applicant wrongly considered that they were faced with an emergency. However, the Government firmly maintain that the exigencies of the situation were such that diamorphine had to be administered to the first applicant as a matter of urgency in order to relieve his distress and that it would not have been practical in the circumstances to seek the approval of the court. However, for the court, these are matters which fall to be dealt with under the 'necessity' requirement of Art 8(2), and not from the standpoint of the 'in accordance with the law' requirements."
"The court considers that, having regard to the circumstances of the case, the decision of the authorities to override the second applicant's objection to the proposed treatment in the absence of authorisation by a court resulted in a breach of Art 8 of the Convention"