QUEENS BENCH DIVISION
ADMINISTRATIVE COURT
Strand, London, WC2A 2LL |
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B e f o r e :
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R (on the application of OLIVER LESLIE BURKE) |
Claimant |
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- and - |
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THE GENERAL MEDICAL COUNCIL |
Defendant |
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- and - |
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THE DISABILITY RIGHTS COMMISSION |
Interested Party |
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- and - |
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THE OFFICIAL SOLICITOR TO THE SUPREME COURT |
Intervener |
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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
Hearing dates : 26-27 February, 1 March 2004
Further written submissions received on 15, 26, 30 March and 6 April 2004
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REVISED
Crown Copyright ©
Mr Justice Munby :
Para | |
THE FACTS | 3 |
The claimant | 3 |
The GMC Guidance | 7 |
Artificial nutrition and hydration | 18 |
The litigation | 21 |
The relief sought by the claimant | 24 |
SOME PRELIMINARY MATTERS | 26 |
Common ground | 30 |
The role of the DRC and the Official Solicitor | 34 |
THE ISSUES | 37 |
BASIC PRINCIPLES | 40 |
The competent, the incompetent and advance directives | 41 |
The ethical basis of the law | 51 |
Autonomy and self-determination | 54 |
Dignity | 57 |
Autonomy, dignity and the Convention | 59 |
The tension between these principles | 73 |
Conclusions | 80 |
THE COMMON LAW | 81 |
The duty to care | 82 |
Best interests | 88 |
Best interests and life-prolonging treatment | 98 |
The evaluation of best interests | 114 |
Conclusions | 116 |
THE CONVENTION | 117 |
Negative and positive obligations | 119 |
The inter-relationship between Articles 2, 3 and 8 | 122 |
Article 8 | 130 |
Article 3 | 131 |
Article 2 | 152 |
The Convention and the withdrawal of ANH | 163 |
Conclusions | 178 |
COMPELLING THE DOCTOR | 180 |
INVOLVING THE COURT | 195 |
SUMMARY AND DISCUSSION | 212 |
Summary of conclusions | 213 |
Discussion | 215 |
Relief | 224 |
APPENDIX Extracts from the GMC Guidance | Appendix |
The claimant
"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 GMC Guidance
"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."
"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)."
"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)."
"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, and the prognosis so poor that providing artificial nutrition or 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 (who might be from another discipline such as nursing) who has experience of the patient's condition and who is not already directly involved in the patient's care. This will ensure that, in a decision of such sensitivity, the patient's interests have been thoroughly considered, and will provide necessary reassurance to those close to the patient and to the wider public.
It can be extremely difficult to estimate how long a patient will live, especially for patients with multiple underlying conditions. Expert help in this should be sought where you, or the health care team, are uncertain about a particular patient (emphasis added)."
"Where significant conflicts arise about whether artificial nutrition or hydration should be provided, either between you and other members of the health care team or between the team and those close to the patient, and the disagreement cannot be resolved after informal or independent review, you should seek legal advice on whether it is necessary to apply to the court for a ruling."
"Adult competent patients have the right to decide how much weight to attach to the benefits, burdens, risks, and the overall acceptability of any treatment. They have the right to refuse treatment even where refusal may result in harm to themselves or in their own death, and doctors are legally bound to respect their decision. Adult patients who have the capacity to make their own decision can express their wishes about future treatment in an advance statement."
"Applying these principles may result in different decisions in each case, since patients' assessments of the likely benefits and burdens or risks, and what weight or priority to give to these, will differ according to patients' different values, beliefs and priorities. Doctors must take account of patients' preferences when providing treatment. However, where a patient wishes to have a treatment that in the doctor's considered view is not clinically indicated, there is no ethical or legal obligation on the doctor to provide it. Where requested, patients' right to a second opinion should be respected."
"You should bear in mind that you are bound to respect an adult patient's competently made refusal of treatment even where complying with the decision will lead to the patient's death. If a specific treatment is requested which, in your considered view is clinically inappropriate, you are not legally or ethically bound to provide it. However, you should give the patient a clear explanation of the reasons for your view, and respect their request to have a second opinion."
"The emphasis is on the right of the patient to refuse treatment rather than the right to insist on treatment."
Ms Campbell made the same point:
"the GMC guidance is premised on the fact that any disagreement that may arise will occur when an individual refuses treatment that the doctor wishes to provide Unfortunately, the GMC guidance does not deal with the scenario that exists in Mr Burke's case (and the DRC believes in many other cases) where the doctor wants to withdraw or does not wish to provide treatment (especially if the reason is based on prejudicial views of disability) but the individual disabled patient or their friends and family wishes the treatment to begin or to continue if started."
Artificial nutrition and hydration
"Artificial hydration and nutrition are different and the decision-making progress regarding whether to provide artificial hydration or nutrition is very different. It is not necessarily the case that where a patient is being artificially hydrated, they should also receive artificial nutrition or vice versa.
I again looked at the arguments for and against artificial nutrition, in weighing the benefits and burdens for an individual patient. The argument against artificial nutrition is that the reduction in appetite is a normal part of the dying process. I also described a case where the provision of artificial nutrition could increase the patient's suffering. Sometimes in a cancer patient, the patient's metabolic rate will increase and the patient will lose weight. This is more common for certain cancers; one example is a type of lung cancer. In these instances, the changes in the body are not like those of starvation or malnutrition. If artificial nutrition is provided, studies have found no evidence that the patient's weight will increase, or that their nutritional status or life expectancy will improve. This is thought to be because as food is provided, this further increases the metabolic rate, causing greater weight loss. The provision of nutrition therefore, feeds the increased metabolic rate more and more. In addition, there is evidence in some animal studies that by providing nutrition to an animal with cancer, this may increase the speed of growth of the tumour, as if the nutrition is feeding the cancer."
She continued:
"A patient with severe dementia may have no interest in food and the processes in dementia can be rather similar to those in cancer in that the dementia itself can cause some people to have some wasting. A reduction in the intake of food is part of the disease. When faced with a person with severe and deteriorating dementia who does not wish to eat and drink, the provision of artificial nutrition and hydration can be very distressing for the patient, who may attempt to remove the line. Any potential benefits may be outweighed by the necessity to sedate the patient in order to perform the invasive procedures that artificial nutrition or hydration require, and the potential side effects and risks of such sedation.
In certain circumstances, having weighed up the benefits and burdens and discussed the patient's individual wishes, it can be appropriate to withhold or withdraw life prolonging treatments where death is not imminent. The cancer and dementia cases in particular illustrates this and these cases were the background for Paragraph 81 of the GMC Guidance where there is reference to the situation where death is not imminent."
"It is quite incorrect to consider the maintenance of ANH as a neutral option. There is a well recognised complication rate surrounding the procedures used particularly the placement and maintenance of naso-gastric and gastrostomy tubes. It may be associated with infection both at the site of introduction as well as recurrent pneumonia secondary to feed aspiration. Feed related diarrhoea may be difficult to control and enhance the risk of skin damage and bed sores. There is also a psychological aspects for those close to the patient which reflects upon the dignity of the dying patient. The decision making with respect to ANH must take these common eventualities in to consideration.
In my own practice the majority of cases in whom ANH is withhold are found in the group of patients with progressive dementia. In such circumstances it is common for oral in-take of fluids and nutrients to be diminished or absent (usually in the presence of a normal upper gastro-intestinal tract). With the diminishing intake it is a common phenomena for no hunger or thirst to be exhibited and no overt distress displayed
I would consider it is important to maintain the current (GMC) guidelines which readily allow for the provision of good clinical practice in these extremely distressing circumstances. ANH should remain an area for active therapeutic decision making based upon the best medical information available to the attending clinicians. I would emphasise that the instigation or maintenance of ANH is not a neutral decision but one that requires detailed assessment of the potential benefits and risks associated."
The litigation
The relief sought by the claimant
"(a) paragraphs 32, 38 and 81 of the Guidance 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;
(b) a patient is entitled to have the question of whether or not care in the form of artificial nutrition and hydration is withdrawn resolved by a court or tribunal in accordance with Article 6(1);
(c) 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 Articles 2, 3 and 8 and would be unlawful under domestic law;
(d) where death is imminent, the withholding or withdrawal 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 Articles 2, 3 and 8 and would be unlawful under domestic law or (2) alternatively would be a breach of his rights under Articles 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 die of starvation or 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."
He indicated that he might wish to reconsider the precise form of the relief in the light of my judgment.
Common ground
"The powers of the General Council shall include the power to provide, in such manner as the Council think fit, advice for members of the medical profession on standards of professional conduct or performance or on medical ethics."
It is common ground that the GMC is a public body amenable to judicial review and a public authority for the purposes of section 6 of the Human Rights Act 1998.
"The concept of guidance goes beyond simply providing a checklist of factors which the commission should take into account. To guide someone is to lead, steer or point someone in a particular direction."
Allowing for the important difference between "guidance" and "advice" I agree with all of this.
" 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 proferring answers to hypothetical questions of law which do not strictly arise for decision."
I respectfully agree. As I pointed out in R (A, B, X and Y) v East Sussex CC and the Disability Rights Commission (No 2) [2003] EWHC 167 (Admin), (2003) 6 CCLR 194, at para [163], it is not the task of a judge when sitting judicially even in the Administrative Court to set out to write a textbook or practice manual or to give advisory opinions.
The role of the DRC and the Official Solicitor
"some decisions by medical professionals on whether disabled people should live or die are based on a backdrop of negative images and poorly informed assumptions of intolerable suffering and unacceptable dependence on others; and a fear that "quality of life" decisions are sometimes based on the assumption that a particular disability makes life not worth living; and that these have led in some cases to inappropriate decisions to withhold or withdraw ANH, including in the face of the contrary expressed wishes of close relatives."
I place these concerns on record. I make no comment about them, one way or the other. There is no need for me to do so. It would not be right for me to do so, for there is insufficient evidence before me to enable me to come to any informed view on the matter.
"The enjoyment of the rights and freedoms set forth in this Convention shall be secured without discrimination on any ground such as sex, race, colour, language, religion, political or other opinion, national or social origin, association with a national minority, property, birth or other status."
The competent, the incompetent and advance directives
The ethical basis of the law
"I start with the concept of the sanctity of life [W]e have a strong feeling that there is an intrinsic value in human life, irrespective of whether it is valuable to the person concerned or indeed to anyone else. Those who adhere to religious faiths which believe in the sanctity of all God's creation and in particular that human life was created in the image of God himself will have no difficulty with the concept of the intrinsic value of human life. But even those without any religious belief think in the same way. In a case like this we should not try to analyse the rationality of such feelings. What matters is that, in one form or another, they form part of almost everyone's intuitive values. No law which ignores them can possibly hope to be acceptable.
Our belief in the sanctity of life explains why we think it is almost always wrong to cause the death of another human being, even one who is terminally ill or so disabled that we think that if we were in his position we would rather be dead. Still less do we tolerate laws such as existed in Nazi Germany, by which handicapped people or inferior races could be put to death because someone else thought that their lives were useless.
But the sanctity of life is only one of a cluster of ethical principles which we apply to decisions about how we should live. Another is respect for the individual human being and in particular for his right to choose how he should live his own life. We call this individual autonomy or the right of self-determination. And another principle, closely connected, is respect for the dignity of the individual human being: our belief that quite irrespective of what the person concerned may think about it, it is wrong for someone to be humiliated or treated without respect for his value as a person. The fact that the dignity of an individual is an intrinsic value is shown by the fact that we feel embarrassed and think it wrong when someone behaves in a way which we think demeaning to himself, which does not show sufficient respect for himself as a person."
Autonomy and self-determination
"Every human being of adult years and sound mind has a right to determine what shall be done with his own body."
"what is no more and no less than the right of a patient to determine for himself whether he will or will not accept the doctor's advice"
and added:
"the patient's right to make his own decision may be seen as a basic human right protected by the common law."
In In re T (Adult: Refusal of Treatment) [1993] Fam 95 at p 116 the President (Butler-Sloss LJ as she then was) quoted with approval the following passage from the judgment of Robins JA in Malette v Shulman (1990) 67 DLR (4th) 321 at p 336:
"The right to determine what shall be done with one's own body is a fundamental right in our society. The concepts inherent in this right are the bedrock upon which the principles of self-determination and individual autonomy are based. Free individual choice in matters affecting this right should, in my opinion, be accorded very high priority."
"A mentally competent patient has an absolute right to refuse to consent to medical treatment for any reason, rational or irrational, or for no reason at all, even where that decision may lead to his or her own death."
The source of this aphorism is in that part of his speech in Sidaway at p 904 where Lord Templeman said:
" the doctor is not entitled to make the final decision with regard to treatment which may have disadvantages or dangers. Where the patient's health and future are at stake, the patient must make the final decision. The patient is free to decide whether or not to submit to treatment recommended by the doctor and therefore the doctor impliedly contracts to provide information which is adequate to enable the patient to reach a balanced judgment, subject always to the doctor's own obligation to say and do nothing which the doctor is satisfied will be harmful to the patient If the doctor making a balanced judgment advises the patient to submit to the operation, the patient is entitled to reject that advice for reasons which are rational, or irrational, or for no reason. The duty of the doctor in these circumstances, subject to his overriding duty to have regard to the best interests of the patient, is to provide the patient with information which will enable the patient to make a balanced judgment if the patient chooses to make a balanced judgment."
Dignity
"The recognition and protection of human dignity is one of the core values in truth the core value of our society and, indeed, of all the societies which are part of the European family of nations and which have embraced the principles of the Convention. It is a core value of the common law, long pre-dating the Convention The invocation of the dignity of the patient in the form of declaration habitually used when the court is exercising its inherent declaratory jurisdiction in relation to the gravely ill or dying is not some meaningless incantation designed to comfort the living or to assuage the consciences of those involved in making life and death decisions: it is a solemn affirmation of the law's and of society's recognition of our humanity and of human dignity as something fundamental."
"I think that the fallacy in this argument is that it assumes that we have no interests except in those things of which we have conscious experience. But this does not accord with most people's intuitive feelings about their lives and deaths. At least a part of the reason why we honour the wishes of the dead about the distribution of their property is that we think it would wrong them not to do so, despite the fact that we believe that they will never know that their will has been ignored. Most people would like an honourable and dignified death and we think it wrong to dishonour their deaths, even when they are unconscious that this is happening. We pay respect to their dead bodies and to their memory because we think it an offence against the dead themselves if we do not. Once again I am not concerned to analyse the rationality of these feelings. It is enough that they are deeply rooted in our ways of thinking and that the law cannot possibly ignore them. Thus I think that counsel for the Official Solicitor offers a seriously incomplete picture of Anthony Bland's interests when he confines them to animal feelings of pain or pleasure. It is demeaning to the human spirit to say that, being unconscious, he can have no interest in his personal privacy and dignity, in how he lives or dies.
Anthony Bland therefore has a recognisable interest in the manner of his life and death which can help the court to apply the principles of self-determination and the value of the individual. We can say from what we have learned of Anthony Bland from those closest to him that, forced as we are to choose, we think it is more likely that in his present state he would choose to die than to live. There is no suggestion that he was, for example, motivated by any religious principles which would have made him want his life in its present state prolonged. We can also say that in allowing him to die, we would be showing more respect to him as an individual than by keeping him alive."
As he added at p 833:
"The best interests of the patient in my judgment embrace not only recovery or the avoidance of pain but also a dignified death."
I respectfully agree.
Autonomy, dignity and the Convention
" the concept of "private life" is a broad term not susceptible to exhaustive definition. It covers the physical and psychological integrity of a person. It can sometimes embrace aspects of an individual's physical and social identity Article 8 also protects a right to personal development, and the right to establish and develop relationships with other human beings and the outside world. Though no previous case has established as such any right to self-determination as being contained in Article 8 of the Convention, the Court considers that the notion of personal autonomy is an important principle underlying the interpretation of its guarantees."
And at para [65] it added:
"The very essence of the Convention is respect for human dignity and human freedom."
"Mental health must also be regarded as a crucial part of private life associated with the aspect of moral integrity. Article 8 protects a right to identity and personal development, and the right to establish and develop relationships with other human beings and the outside world. The preservation of mental stability is in that context an indispensable precondition to effective enjoyment of the right to respect for private life."
"Elusive though the concept is, I think one must understand "private life" in article 8 as extending to those features which are integral to a person's identity or ability to function socially as a person",
and quoted with approval Professor Feldman's observation that:
"Moral integrity in this sense demands that we treat the person holistically as morally worthy of respect, organising the state and society in ways which respect people's moral worth by taking account of their need for security",
whilst Lord Carswell accepted at para [74] that:
"the preservation of mental stability can be regarded as a right protected by article 8."
"[63] While it might be pointed out that death was not the intended consequence of the applicants' conduct in the above situations, the Court does not consider that this can be a decisive factor. In the sphere of medical treatment, the refusal to accept a particular treatment might, inevitably, lead to a fatal outcome, yet the imposition of medical treatment, without the consent of a mentally competent adult patient, would interfere with a person's physical integrity in a manner capable of engaging the rights protected under Article 8(1) of the Convention. As recognised in domestic case-law, a person may claim to exercise a choice to die by declining to consent to treatment which might have the effect of prolonging his life.
[64] In the present case, though medical treatment is not an issue, the applicant is suffering from the devastating effects of a degenerative disease which will cause her condition to deteriorate further and increase her physical and mental suffering. She wishes to mitigate that suffering by exercising a choice to end her life with the assistance of her husband. As stated by Lord Hope, the way she chooses to pass the closing moments of her life is part of the act of living, and she has a right to ask that this too must be respected.
[65] The very essence of the Convention is respect for human dignity and human freedom. Without in any way negating the principle of sanctity of life protected under the Convention, the Court considers that it is under Article 8 that notions of the quality of life take on significance. In an era of growing medical sophistication combined with longer life expectancies, many people are concerned that they should not be forced to linger on in old age or in states of advanced physical or mental decrepitude which conflict with strongly held ideas of self and personal identity.
[66] In the case of Rodriguez v the Attorney General of Canada ([1994] 2 LRC 136), which concerned a not dissimilar situation to the present, the majority opinion of the Supreme Court considered that the prohibition on the appellant in that case from receiving assistance in suicide contributed to her distress and prevented her from managing her death. This deprived her of autonomy and required justification under principles of fundamental justice. Although the Canadian court was considering a provision of the Canadian Charter framed in different terms from those of to Article 8 of the Convention, comparable concerns arose regarding the principle of personal autonomy in the sense of the right to make choices about one's own body."
In other words, the personal autonomy which is protected by 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.
"[51] The Court notes that the applicant is in the advanced stages of a terminal and incurable illness. At the date of the hearing, it was observed that there had been a marked decline in his condition and he had to be transferred to a hospital. His condition was giving rise to concern. The limited quality of life he now enjoys results from the availability of sophisticated treatment and medication in the United Kingdom and the care and kindness administered by a charitable organisation. He has been counselled on how to approach death and has formed bonds with his carers.
[52] The abrupt withdrawal of these facilities will entail the most dramatic consequences for him. It is not disputed that his removal will hasten his death. There is a serious danger that the conditions of adversity which await him in St Kitts will further reduce his already limited life expectancy and subject him to acute mental and physical suffering. Any medical treatment which he might hope to receive there could not contend with the infections which he may possibly contract on account of his lack of shelter and of a proper diet as well as exposure to the health and sanitation problems which beset the population of St Kitts. While he may have a cousin in St Kitts, no evidence has been adduced to show whether this person would be willing or in a position to attend to the needs of a terminally ill man. There is no evidence of any other form of moral or social support. Nor has it been shown whether the applicant would be guaranteed a bed in either of the hospitals on the island which, according to the Government, care for AIDS patients.
[53] In view of these exceptional circumstances and bearing in mind the critical stage now reached in the applicant's fatal illness, the implementation of the decision to remove him to St Kitts would amount to inhuman treatment by the respondent State in violation of Article 3.
The Court also notes in this respect that the respondent State has assumed responsibility for treating the applicant's condition since August 1994. He has become reliant on the medical and palliative care which he is at present receiving and is no doubt psychologically prepared for death in an environment which is both familiar and compassionate. Although it cannot be said that the conditions which would confront him in the receiving country are themselves a breach of the standards of Article 3, his removal would expose him to a real risk of dying under most distressing circumstances and would thus amount to inhuman treatment."
"Article 3 of the Convention, which requires that a person is not subjected to inhuman or degrading treatment, includes the right to die with dignity."
I agree. I agree also with Mr Francis when he submits that Article 3 encompasses a right to be protected from treatment or, I would add, a lack of treatment which will result in dying in avoidably distressing circumstances.
"Not every act or measure which adversely affects moral or physical integrity will interfere with the right to respect to private life guaranteed by Article 8. However, the Court's case-law does not exclude that treatment which does not reach the severity of Article 3 treatment may nonetheless breach Article 8 in its private life aspect where there are sufficiently adverse effects on physical and moral integrity."
"Dignified ends may sometimes demand the use of undignified means But this does not mean that means must be allowed to triumph over ends. There is a balance to be held and it is often a very difficult balance to strike. It is difficult enough to balance the utility or possible futility of means against the utility or possible futility of ends; it is all the more difficult when one has to assess in addition the dignity or possible indignity of the means against the end in view. Modern medical law and ethics illustrate the excruciating difficulty we often have in achieving the right balance between using undignified means in striving to achieve dignified ends."
Moreover, we have to remember that views as to what is dignified or undignified are highly personal. What is dignified to one may be undignified to another. And vice versa. So, as Ms Rose correctly observes, we must guard against assuming that ANH is in all circumstances a good thing conducive to human dignity merely because that is, if indeed it is, the claimant's strongly held view.
"The Court considers that the position of inferiority and powerlessness which is typical of patients confined in psychiatric hospitals calls for increased vigilance in reviewing whether the Convention has been complied with."
In Keenan v United Kingdom (2001) 33 EHRR 913 at paras [90], [110], [112], the Court said this:
"[90] persons in custody are in a vulnerable position and the authorities are under a duty to protect them
[110] the authorities are under an obligation to protect the health of persons deprived of liberty. The lack of appropriate medical care may amount to treatment contrary to Article 3. In particular, the assessment of whether the treatment or punishment concerned is incompatible with the standards of Article 3 has, in the case of mentally ill persons, to take into consideration their vulnerability and their inability, in some cases, to complain coherently or at all about how they are being affected by any particular treatment.
[112] While it is true that the severity of suffering, physical or mental, attributable to a particular measure has been a significant consideration in many of the cases decided by the Court under Article 3, there are circumstances where proof of the actual effect on the person may not be a major factor. For example treatment of a mentally ill person may be incompatible with the standards imposed by Article 3 in the protection of fundamental human dignity, even though that person may not be able, or capable of, pointing to any specific ill-effects."
"In this case there is a lack of immediate compatibility between the applicant's situation as such and detention in any ordinary prison facility. The applicant is confined to her wheelchair and has an extensive need for assistance, to the extent that at night she is unable to move enough to keep a normal human body temperature if the room in which she stays is not specially heated or, as in casu, she is not wrapped, not just in blankets, but in a space blanket.
In this the applicant is different from other people to the extent that treating her like others is not only discrimination but brings about a violation of Article 3
It is obvious that restraining any non-disabled person to the applicant's level of ability to move and assist herself, for even a limited period of time, would amount to inhuman and degrading treatment possibly torture. In a civilised country like the United Kingdom, society considers it not only appropriate but a basic humane concern to try to improve and compensate for the disabilities faced by a person in the applicant's situation. In my opinion, these compensatory measures come to form part of the disabled person's physical integrity. It follows that, for example, to prevent the applicant, who lacks both ordinary legs and arms, from bringing with her the battery charger to her wheelchair when she is sent to prison for one week, or to leave her in unsuitable sleeping conditions so that she has to endure pain and cold the latter to the extent that eventually a doctor had to be called is in my opinion a violation of the applicant's right to physical integrity. Other events in the prison amount to the same.
The applicant's disabilities are not hidden or easily overlooked. It requires no special qualification, only a minimum of ordinary human empathy, to appreciate her situation and to understand that to avoid unnecessary hardship that is, hardship not implicit in the imprisonment of an able-bodied person she has to be treated differently from other people because her situation is significantly different."
"This brings out the enhanced degree of protection which may be called for when the human dignity at stake is that of someone who is so disabled as to be critically dependent on the help of others for even the simplest and most basic tasks of day to day living. In order to avoid discriminating against the disabled one may, as Judge Greve recognised, need to treat the disabled differently precisely because their situation is significantly different from that of the able-bodied. Moreover, the positive obligation of the State to take reasonable and appropriate measures to secure the rights of the disabled under article 8 of the Convention and, in particular, the positive obligation of the State to secure their essential human dignity, calls for human empathy and humane concern as society, in Judge Greve's words, seeks to try to ameliorate and compensate for the disabilities faced by persons in A and B's situation (my emphasis)."
"With [this argument] the enhanced weight which is properly to be attached to the article 8 rights of those who through disability are already deprived of so much of what makes life enjoyable and enriching for the majority I have no difficulty. It is, for the very reasons articulated by Judge Greve, a compelling argument. The claims of the disabled and the obligations of the State to give effect to their article 8 rights in the ways identified by Judge Greve in her separate opinion in Price and by Mr Bratza in his concurring opinion in Botta analyses with each of which I entirely agree are powerful indeed. I agree, therefore, that A and B's article 8 rights weigh heavily in the balance."
" human dignity is all the more important for people whose freedom of action and choice is curtailed, whether by law or by circumstances such as disability. The Convention is a living instrument We need to be able to use it to promote respect for the inherent dignity of all human beings but especially those who are most vulnerable to having that dignity ignored. In reality, the niceties and technicalities with which we have to be involved in the courts should be less important than the core values which underpin the whole Convention."
I respectfully agree.
The tension between these principles
"No one, I think, would quarrel with these deeply rooted ethical principles. But what is not always realised, and what is critical in this case, is that they are not always compatible with each other. Take, for example, the sanctity of life and the right of self-determination. We all believe in them and yet we cannot always have them both. The patient who refuses medical treatment which is necessary to save his life is exercising his right to self-determination. But allowing him, in effect, to choose to die, is something which many people will believe offends the principle of the sanctity of life. Suicide is no longer a crime, but its decriminalisation was a recognition that the principle of self-determination should in that case prevail over the sanctity of life.
A conflict between the principles of the sanctity of life and the individual's right of self-determination may therefore require a painful compromise to be made. In the case of the person who refuses an operation without which he will certainly die, one or other principle must be sacrificed. We may adopt a paternalist view, deny that his autonomy can be allowed to prevail in so extreme a case, and uphold the sanctity of life. Sometimes this looks an attractive solution, but it can have disturbing implications. Do we insist upon patients accepting life-saving treatment which is contrary to their strongly held religious beliefs? Should one force-feed prisoners on hunger strike? English law is, as one would expect, paternalist towards minors. But it upholds the autonomy of adults. A person of full age may refuse treatment for any reason or no reason at all, even if it appears certain that the result will be his death."
"it is established that the principle of self-determination requires that respect must be given to the wishes of the patient, so that if an adult patient of sound mind refuses, however unreasonably, to consent to treatment or care by which his life would or might be prolonged, the doctors responsible for his care must give effect to his wishes, even though they do not consider it to be in his best interests to do so To this extent, the principle of the sanctity of human life must yield to the principle of self-determination and, for present purposes perhaps more important, the doctor's duty to act in the best interests of his patient must likewise be qualified."
"a conflict between two interests, that of the patient and that of the society in which he lives. The patient's interest consists of his right to self-determination his right to live his own life how he wishes, even if it will damage his health or lead to his premature death. Society's interest is in upholding the concept that all human life is sacred and that it should be preserved if at all possible. It is well established that in the ultimate the right of the individual is paramount."
He continued:
"But this merely shifts the problem where the conflict occurs and calls for a very careful examination of whether, and if so the way in which, the individual is exercising that right. In case of doubt, that doubt falls to be resolved in favour of the preservation of life for if the individual is to override the public interest, he must do so in clear terms."
" the same principle applies where the patient's refusal to give his consent has been expressed at an earlier date, before he became unconscious or otherwise incapable of communicating it; though in such circumstances especial care may be necessary to ensure that the prior refusal of consent is still properly to be regarded as applicable in the circumstances which have subsequently occurred".
It is the problem that I recently had to consider in HE v A Hospital NHS Trust [2003] EWHC 1017 (Fam), [2003] 2 FLR 408. I summarised my conclusion at para [46]:
"Where life is at stake the evidence must be scrutinised with especial care. Clear and convincing proof is required. The continuing validity and applicability of the advance directive must be clearly established by convincing and inherently reliable evidence."
"There is no formula for reconciling this conflict of principles and no easy answer. It does no good to seize hold of one of them, such as the sanctity of life, and say that because it is valid and right, as it undoubtedly is, it must always prevail over other principles which are also valid and right. Nor do I think it helps to say that these principles are all really different ways of looking at the same thing. Counsel appearing as amicus said that there was "no inherent conflict between having regard to the quality of life and respecting the sanctity of life; on the contrary they are complementary; the principle of sanctity of life embraces the need for full respect to be accorded to the dignity and memory of the individual." To my mind, this is rhetoric intended to dull the pain of having to choose. For many people, the sanctity of life is not at all the same thing as the dignity of the individual. We cannot smooth away the differences by interpretation.
In my view the choice which the law makes must reassure people that the courts do have full respect for life, but that they do not pursue the principle to the point at which it has become almost empty of any real content and when it involves the sacrifice of other important values such as human dignity and freedom of choice."
Conclusions
The duty to care
"Where one individual has assumed responsibility for the care of another who cannot look after himself or herself, whether as a medical practitioner or otherwise, that responsibility cannot lawfully be shed unless arrangements are made for the responsibility to be taken over by someone else. Thus a person having charge of a baby who fails to feed it, so that it dies, will be guilty at least of manslaughter. The same is true of one having charge of an adult who is frail and cannot look after herself: Reg v Stone [1977] QB 354 [I]n general it would not be lawful for a medical practitioner who assumed responsibility for the care of an unconscious patient simply to give up treatment in circumstances where continuance of it would confer some benefit on the patient."
"The "doctor in the house" who volunteers to assist a lady in the audience who, overcome by the drama or by the heat in the theatre, has fainted away, is impelled to act by no greater duty than that imposed by his own Hippocratic oath."
And there may be circumstances in which a doctor, even if he has given medical assistance, will not be treated as having assumed responsibility for the patient's care and will therefore be under no continuing obligation to provide treatment. As Stuart-Smith LJ said in Capital & Counties Plc v Hampshire County Council [1997] QB 1004 at p 1035:
"a doctor who happened to witness a road accident will very likely go to the assistance of anyone injured, but he is not under any legal obligation to do so (save in certain limited circumstances which are not relevant) and the relationship of doctor and patient does not arise. If he volunteers his assistance, his only duty as a matter of law is not to make the victim's condition worse."
"There is no doubt that once the relationship of doctor and patient or hospital authority and admitted patient exists, the doctor or the hospital owe a duty to take reasonable care to effect a cure, not merely to prevent further harm."
"In the case of adult patients made unconscious by an accident or otherwise, they will normally be received into the casualty department of a hospital, which thereby undertakes the care of them. It will then be the duty of the doctors at that hospital to use their best endeavours to do, by way of either an operation or other treatment, that which is in the best interests of such patients."
As Lord Woolf MR said in Kent v Griffiths [2001] QB 36 at para [45]:
"In the case of health services under the [National Health Service Act 1977] the conventional situation is that there is a duty of care."
The same point was made by Lord Phillips of Worth Matravers MR in Watson v British Boxing Board of Control Ltd [2001] QB 1134 at para [47]:
"the duty to take reasonable care to prevent further harm and to effect a cure is founded on the acceptance of the patient as a patient, which carries with it an implicit undertaking to care for the patient's needs."
Best interests
"Best interests are not limited to best medical interests."
This has since been elaborated in what I venture to think are two fundamentally important cases: Re A (Male Sterilisation) [2000] 1 FLR 549 and In re S (Adult Patient: Sterilisation) [2001] Fam 15. So far as is relevant for present purposes these cases establish three inter-related propositions.
"best interests encompasses medical, emotional and all other welfare issues."
Thorpe LJ said much the same thing in In re S (Adult Patient: Sterilisation) [2001] Fam 15 at p 30:
"In deciding what is best for the disabled patient the judge must have regard to the patient's welfare as the paramount consideration. That embraces issues far wider than the medical. Indeed it would be undesirable and probably impossible to set bounds to what is relevant to a welfare determination."
The second is that the 'Bolam' test see Bolam v Friern Hospital Management Committee [1957] 1 WLR 582 is not determinative. The doctor's duty is not merely to act in accordance with a responsible and competent body of relevant professional opinion: his duty is to act in accordance with the patient's best interests. The third, which is in truth no more than the inevitable and logical corollary of the other two, is that the decision as to what is in fact in the patient's best interests is not for the doctor: it is for the patient if competent or, if the patient is incompetent and the matter comes to court, for the judge.
"Doctors charged with the decisions about the future treatment of patients and whether such treatment would, in the cases of those lacking capacity to make their own decisions, be in their best interests, have to act at all times in accordance with a responsible and competent body of relevant professional opinion. That is the professional standard set for those who make such decisions. The doctor, acting to that required standard, has, in my view, a second duty, that is to say, he must act in the best interests of a mentally incapacitated patient. I do not consider that the two duties have been conflated into one requirement. In any event, in the case of an application for approval of a sterilisation operation, it is the judge, not the doctor, who makes the decision that it is in the best interests of the patient that the operation be performed."
She said much the same thing in In re S at p 27:
"I would suggest that the starting point of any medical decision would be the principles enunciated in the Bolam test and that a doctor ought not to make any decision about a patient that does not fall within the broad spectrum of the Bolam test. The duty to act in accordance with responsible and competent professional opinion may give the doctor more than one option since there may well be more than one acceptable medical opinion. When the doctor moves on to consider the best interests of the patient he/she has to choose the best option, often from a range of options. As Mr Munby has pointed out, the best interests test ought, logically, to give only one answer.
In these difficult cases where the medical profession seeks a declaration as to lawfulness of the proposed treatment, the judge, not the doctor, has the duty to decide whether such treatment is in the best interests of the patient. The judicial decision ought to provide the best answer not a range of alternative answers. There may, of course, be situations where the answer may not be obvious and alternatives may have to be tried. It is still at any one point the best option of that moment which should be chosen. the principle of best interests as applied by the court extends beyond the considerations set out in the Bolam case [1957] 1 WLR 582. The judicial decision will incorporate broader ethical, social, moral and welfare considerations. The question, however, for the judge was not was the proposed treatment within the range of acceptable opinion among competent and responsible practitioners, but was it in the best interests of S? The Bolam test was, in my view, irrelevant to the judicial decision, once the judge was satisfied that the range of options was within the range of acceptable opinion among competent and responsible practitioners."
"in determining the welfare of the patient the Bolam test is applied only at the outset to ensure that the treatment proposed is recognised as proper by a responsible body of medical opinion skilled in delivering that particular treatment. That may be a necessary check in an exercise where it would be impossible to be over scrupulous. But I find it hard to imagine in practice a disputed trial before a judge of the Division in which a responsible party proposed for an incompetent patient a treatment that did not satisfy the Bolam test. In practice the dispute will generally require the court to choose between two or more possible treatments both or all of which comfortably pass the Bolam test. As most of us know from experience a patient contemplating treatment for a physical condition or illness is often offered a range of alternatives with counter-balancing advantages and disadvantages. One of the most important services provided by a consultant is to explain the available alternatives to the patient, particularly concentrating on those features of advantage and disadvantage most relevant to his needs and circumstances. In a developing relationship of confidence the consultant then guides the patient to make the choice that best suits his circumstances and personality. It is precisely because the patient is prevented by disability from that exchange that the judge must in certain circumstances either exercise the choice between alternative available treatments or perhaps refuse any form of treatment. In deciding what is best for the disabled patient the judge must have regard to the patient's welfare as the paramount consideration. That embraces issues far wider than the medical. Indeed it would be undesirable and probably impossible to set bounds to what is relevant to a welfare determination. In my opinion the Bolam case has no contribution to make to this second and determinative stage of the judicial decision."
"It is, I think, important that there should not be a belief that what the doctor says is the patient's best interest is the patient's best interest. For my part I would certainly reserve to the court the ultimate power and duty to review the doctor's decision in the light of all the facts."
Likewise in R v Portsmouth Hospitals NHS Trust ex p Glass [1999] 2 FLR 905 at p 908 Lord Woolf MR added this important qualification to the suggested principle that the courts refuse to dictate appropriate treatment to a medical practitioner:
"I add a further qualification and say that this is subject to the power which the courts always have to take decisions in relation to the child's best interests. In doing so, the court takes fully into account the attitude of medical practitioners."
"It seems to me that the medical profession can tell the court about the patient's condition and prognosis and about the probable consequences of giving or not giving certain kinds of treatment or care, including the provision of artificial feeding. But whether in those circumstances it would be lawful to provide or withhold the treatment or care is a matter for the law and must be decided with regard to the general moral considerations of which I have spoken. As to these matters, the medical profession will no doubt have views which are entitled to great respect, but I would expect medical ethics to be formed by the law rather than the reverse.
I should emphasise that this is not a case in which some past act on the part of a doctor is being called into question. If the issue was whether such an act had given rise to civil or criminal liability, the fact that the doctor has acted in accordance with responsible professional opinion would usually be determinative. But in this case the plaintiff hospital trust is seeking the opinion of the court as to whether future conduct will be lawful. It has invited the court to decide whether, on medical facts which are not in dispute, the termination of life-support would be justified as being in the best interests of the patient. This is a purely legal (or moral) decision which does not require any medical expertise and is therefore appropriately made by the court."
"It is, I suggest, a sound and reasonable proposition that the doctor should be required to exercise care in respecting the patient's right of decision. He must acknowledge that in very many cases factors other than the purely medical will play a significant part in his patient's decision-making process. The doctor's concern is with health and the relief of pain. These are the medical objectives. But a patient may well have in mind circumstances, objectives, and values which he may reasonably not make known to the doctor but which may lead him to a different decision from that suggested by a purely medical opinion. The doctor's duty can be seen, therefore, to be one which requires him not only to advise as to medical treatment but also to provide his patient with the information needed to enable the patient to consider and balance the medical advantages and risks alongside other relevant matters, such as, for example, his family, business or social responsibilities of which the doctor may be only partially, if at all, informed."
Best interests and life-prolonging treatment
"There is without doubt a very strong presumption in favour of a course of action which will prolong life, but it is not irrebuttable. As this court recognised in In re B, account has to be taken of the pain and suffering and quality of life which the child will experience if life is prolonged. Account has also to be taken of the pain and suffering involved in the proposed treatment itself."
Balcombe LJ at p 51 observed that:
"There is only the one test: that the interests of the ward are paramount. Of course the court will approach those interests with a strong predilection in favour of the preservation of life, because of the sanctity of human life. But there neither is, nor should there be, any absolute rule that, save where the ward is already terminally ill, that is dying, neither the court nor any responsible parent can approve the withholding of life-saving treatment on the basis of the quality of the ward's life."
Taylor LJ at p 53 said that:
"the court's high respect for the sanctity of human life imposes a strong presumption in favour of taking all steps capable of preserving it, save in exceptional circumstances."
As Taylor LJ went on to observe, "The problem is to define those circumstances."
"Of course, in the great majority of cases, the best interests of the patient are likely to require that treatment of this kind, if available, should be given to a patient. But this may not always be so. To take a simple example it cannot be right that a doctor, who has under his care a patient suffering painfully from terminal cancer, should be under an absolute obligation to perform upon him major surgery to abate another condition which, if unabated, would or might shorten his life still further. The doctor who is caring for such a patient cannot, in my opinion, be under an absolute obligation to prolong his life by any means available to him, regardless of the quality of the patient's life. Common humanity requires otherwise, as do medical ethics and good medical practice accepted in this country and overseas. As I see it, the doctor's decision whether or not to take any such step must (subject to his patient's ability to give or withhold his consent) be made in the best interests of the patient."
" there is a balancing exercise to be performed in assessing the course to be adopted in the best interests of the child
This brings me face to face with the problem of formulating the critical equation. In truth it cannot be done with mathematical or any precision. There is without doubt a very strong presumption in favour of a course of action which will prolong life, but it is not irrebuttable. As this court recognised in In re B., account has to be taken of the pain and suffering and quality of life which the child will experience if life is prolonged. Account has also to be taken of the pain and suffering involved in the proposed treatment itself
We know that the instinct and desire for survival is very strong. We all believe in and assert the sanctity of human life even very severely handicapped people find a quality of life rewarding which to the unhandicapped may seem manifestly intolerable. People have an amazing adaptability. But in the end there will be cases in which the answer must be that it is not in the interests of the child to subject it to treatment which will cause increased suffering and produce no commensurate benefit, giving the fullest possible weight to the child's, and mankind's, desire to survive."
"There is only the one test: that the interests of the ward are paramount. Of course the court will approach those interests with a strong predilection in favour of the preservation of life, because of the sanctity of human life. But there neither is, nor should there be, any absolute rule that, save where the ward is already terminally ill, that is dying, neither the court nor any responsible parent can approve the withholding of life-saving treatment on the basis of the quality of the ward's life [I]t could in certain circumstances be inimical to the interests of the ward that there should be such a requirement: to preserve life at all costs, whatever the quality of the life to be preserved, and however distressing to the ward may be the nature of the treatment necessary to preserve life, may not be in the interests of the ward."
"Despite the court's inability to compare a life afflicted by the most severe disability with death, the unknown, I am of the view that there must be extreme cases in which the court is entitled to say: "The life which this treatment would prolong would be so cruel as to be intolerable." If, for example, a child was so damaged as to have negligible use of its faculties and the only way of preserving its life was by the continuous administration of extremely painful treatment such that the child either would be in continuous agony or would have to be so sedated continuously as to have no conscious life at all, I cannot think Mr Munby's absolute test should apply to require the treatment to be given. In those circumstances, without there being any question of deliberately ending the life or shortening it, I consider the court is entitled in the best interests of the child to say that deliberate steps should not be taken artificially to prolong its miserable life span.
Once the absolute test is rejected, the proper criteria must be a matter of degree. At what point in the scale of disability and suffering ought the court to hold that the best interests of the child do not require further endurance to be imposed by positive treatment to prolong its life? Clearly, to justify withholding treatment, the circumstances would have to be extreme I consider the correct approach is for the court to judge the quality of life the child would have to endure if given the treatment and decide whether in all the circumstances such a life would be so afflicted as to be intolerable to that child. I say "to that child" because the test should not be whether the life would be tolerable to the decider. The test must be whether the child in question, if capable of exercising sound judgment, would consider the life tolerable."
"the duty to provide care for example, to provide medical treatment ceases when such treatment can serve no humane purpose. In cases when further treatment can prolong the life of the patient only for a short period and at the cost of great pain and suffering, the doctor is under no obligation to continue. Indeed, the duty to act with kindness and humanity points in the opposite direction."
"The vast majority of people with, even very severe, physical or mental disabilities are able to experience and gain pleasure from some aspects of their lives. Where, however, the disability is so profound that individuals have no or minimal levels of awareness of their own existence and no hope of recovering awareness, or where they suffer severe untreatable pain or other distress, the question arises as to whether continuing to provide treatment aimed at prolonging that life artificially would provide a benefit to them. An important factor which is often considered in making these decisions is whether the person is thought to be aware of his or her environment or own existence as demonstrated by, for example:
- being able to interact with others;
- being aware of his or her own existence and having an ability to take pleasure in the fact of that existence; and[2]
- having the ability to achieve some purposeful or self-directed action or to achieve some goal of importance to him or herself.
If treatment is unable to recover or maintain any of these abilities, this is likely to indicate that its continued provision will not be a benefit to the patient. If any one of these abilities can be achieved, then life-prolonging treatment may be of benefit and it is important to consider these factors within the context of the individual's own wishes and values, where these are known, in order to assess whether the patient would, or could reasonably be expected to, consider life-prolonging treatment to be beneficial."
The evaluation of best interests
"There can be no doubt in my mind that the evaluation of best interests is akin to a welfare appraisal. Pending the enactment of a checklist or other statutory direction it seems to me that the first instance judge with the responsibility to make an evaluation of the best interests of a claimant lacking capacity should draw up a balance sheet. The first entry should be of any factor or factors of actual benefit. In the present case the instance would be the acquisition of foolproof contraception. Then on the other sheet the judge should write any counterbalancing dis-benefits to the applicant. An obvious instance in this case would be the apprehension, the risk and the discomfort inherent in the operation. Then the judge should enter on each sheet the potential gains and losses in each instance making some estimate of the extent of the possibility that the gain or loss might accrue. At the end of that exercise the judge should be better placed to strike a balance between the sum of the certain and possible gains against the sum of the certain and possible losses. Obviously, only if the account is in relatively significant credit will the judge conclude that the application is likely to advance the best interests of the claimant."
Conclusions
"Human rights are the rights essential to the life and dignity of the individual in a democratic society. The exact limits of such rights are debatable and, although there is not much trace of economic rights in the 50-year-old Convention, I think it is well arguable that human rights include the right to a minimum standard of living, without which many of the other rights would be a mockery. But they certainly do not include the right to a fair distribution of resources or fair treatment in economic terms in other words, distributive justice. Of course distributive justice is a good thing. But it is not a fundamental human right. No one looking at the legal systems of the member States of the Council of Europe could plausibly say that they treated distributive justice as a fundamental principle to which other considerations of policy or expediency should be subordinated."
As Lord Bingham of Cornhill said in Razgar at para [4]:
"The Convention is directed to the protection of fundamental human rights, not the conferment of individual advantages or benefits."
Lord Walker of Gestingthorpe made the same point at para [34]:
"There is no general human right to good physical and mental health any more than there is a human right to expect (rather than to pursue) happiness."
Negative and positive obligations
The inter-relationship between Articles 2, 3 and 8
"That the right to life is not absolute is demonstrated by the need to reconcile article 2 with potentially conflicting rights under articles 8 and 3. Article 8 protects the patient's right to self-determination Article 2 must give way to article 8 Patient autonomy should prevail over the assertion of an absolute right to life."
Mr Ben Emmerson QC, on behalf of the Official Solicitor, agreed with Mr Grace's reading of Article 8 but submitted (see at p 351) that:
"Articles 3 and 8 are not in conflict with article 2 and are relevant in so far as they assist in defining the scope of any positive obligation to act under article 2."
"As I have already said article 8 protects the right to personal autonomy, otherwise described as the right to physical and bodily integrity. It protects a patient's right to self-determination and an intrusion into bodily integrity must be justified under article 8.2 Mr Grace suggested that article 8 may be in conflict with article 2 and is to be balanced against article 2. I prefer, however, the submission of Mr Emmerson that, in seeking to determine the scope of the positive obligation in article 2, assistance can be derived from the provisions of article 8."
"the Convention must be read as a whole. Consequently a matter specifically dealt with by one of its provisions may also, in some of its aspects, be regulated by other provisions of the Convention."
The Court made a similar point in Soering v United Kingdom (1989) 11 EHRR 439 at para [87]:
" ... any interpretation of the rights and freedoms guaranteed has to be consistent with "the general spirit of the Convention, an instrument designed to maintain and promote the ideals and values of a democratic society"."
"It is true that Article 6 does not explicitly require the interests of witnesses in general, and those of victims called upon to testify in particular, to be taken into consideration. However, their life, liberty or security of person may be at stake, as may interests coming generally within the ambit of Article 8 of the Convention. Such interests of witnesses and victims are in principle protected by other, substantive provisions of the Convention, which imply that Contracting States should organise their criminal proceedings in such a way that those interests are not unjustifiably imperilled. Against this background, principles of fair trial also require that in appropriate cases the interests of the defence are balanced against those of witnesses or victims called upon to testify."
In other words, it was not a question of balancing Article 8 against Article 6, or of affording priority to the rights protected by Article 8. Rather, the rights protected by Article 8 had to be taken into consideration when assessing the content of the rights protected by Article 6. Article 8 cannot water down the absolute right to a fair trial guaranteed by Article 6, but it can nonetheless inform the debate as to the substantive content of the rights guaranteed by Article 6. In the same way, the rights protected by Articles 3 and 8 must be taken into consideration when assessing the substantive content of the rights guaranteed by Article 2.
Article 8
Article 3
"[108] The Court recalls that ill-treatment must attain a minimum level of severity if it is to fall within the scope of Article 3. The assessment of this minimum is relative: it depends on all the circumstances of the case, such as the duration of the treatment, its physical and/or mental effects and, in some cases, the sex, age and state of health of the victim.
[109] In considering whether a punishment or treatment is "degrading" within the meaning of Article 3, the Court will also have regard to whether its object is to humiliate and debase the person concerned and whether, as far as the consequences are concerned, it adversely affected his or her personality in a manner incompatible with Article 3. This has also been described as involving treatment such as to arouse feelings of fear, anguish and inferiority capable of humiliating or debasing the victim and possibly breaking their physical or moral resistance or as driving the victim to act against his will or conscience."
"As regards the types of "treatment" which fall within the scope of Article 3 of the Convention, the Court's case-law refers to "ill-treatment" that attains a minimum level of severity and involves actual bodily injury or intense physical or mental suffering. Where treatment humiliates or debases an individual showing a lack of respect for, or diminishing, his or her human dignity or arouses feelings of fear, anguish or inferiority capable of breaking an individual's moral and physical resistance, it may be characterised as degrading and also fall within the prohibition of Article 3. The suffering which flows from naturally occurring illness, physical or mental, may be covered by Article 3, where it is, or risks being, exacerbated by treatment, whether flowing from conditions of detention, expulsion or other measures, for which the authorities can be held responsible."
"in considering whether treatment is "degrading" within the meaning of Article 3, one of the factors which the Court will take into account in the question of whether its object was to humiliate and debase the person concerned, the absence of any such purpose cannot conclusively rule out a finding of violation of Article 3."
D v United Kingdom (1997) 24 EHRR 423 is, of course, a striking example of the point. The Home Office had no ulterior purpose in that case: it was solely motivated by an entirely legitimate concern to enforce proper immigration controls. After all, and as the facts of Price itself vividly illustrate (see paragraph [68] above), thoughtless, uncaring and uncharitable actions can be quite as damaging and distressing to the victim as the vicious, wilful or malicious.
"On the assumption that article 3 requires to be considered, I am satisfied that the proposed withdrawal of treatment from these two patients has been thoroughly and anxiously considered by a number of experts in the field of PVS patients and is in accordance with the practice of a responsible body of medical opinion. The withdrawal is for a benign purpose in accordance with the best interests of the patients not to continue life-saving treatment; it is legitimate and appropriate that the residual treatment be continued until death. I am, moreover, satisfied that article 3 requires the victim to be aware of the inhuman and degrading treatment which he or she is experiencing or at least to be in a state of physical or mental suffering. An insensate patient suffering from permanent vegetative state has no feelings and no comprehension of the treatment accorded to him or her. Article 3 does not in my judgment apply to these two cases."
"While it is for the medical authorities to decide, on the basis of the recognised rules of medical science, on the therapeutic methods to be used, if necessary by force, to preserve the physical and mental health of patients who are entirely incapable of deciding for themselves and for whom they are therefore responsible, such patients nevertheless remain under the protection of Article 3, whose requirements permit of no derogation.
The established principles of medicine are admittedly in principle decisive in such cases; as a general rule, a measure which is a therapeutic necessity cannot be regarded as inhuman or degrading. The Court must nevertheless satisfy itself that the medical necessity has been convincingly shown to exist."
In Herczegfalvy the claimant asserted that the compulsory medical treatment (including forcibly administered food and neuroleptics) to which he had been subjected for treatment of his mental illness involved breaches of both Article 3 and Article 8. The Strasbourg court dismissed both claims. Herczegfalvy was thus a case of active medical intervention, whereas the President was concerned, as I am, with a threatened withdrawal of treatment, but the essential principles seem to me to be the same.
"In the present case, it is beyond dispute that the respondent Government have not, themselves, inflicted any ill-treatment on the applicant. Nor is there any complaint that the applicant is not receiving adequate care from the State medical authorities. The situation of the applicant is therefore not comparable with the case of D v United Kingdom (1997) 24 EHRR 423, in which an AIDS sufferer was threatened with removal from the United Kingdom to the island of St Kitts where no effective medical or palliative treatment for his illness was available and he would have been exposed to the risk of dying under most distressing circumstances. The responsibility of the State would have been engaged by its act ("treatment") of removing him in those circumstances. There is no comparable act or "treatment" on the part of the United Kingdom in the present case."
"the scope of the positive obligation must be interpreted in a way which does not impose an impossible or disproportionate burden on the authorities."
And although that was said in relation to Article 2, I readily accept that the same goes for Article 3. The State's positive obligations, as I have said, can never be open-ended.
"Treatment has been held by the court to be 'inhuman' because, inter alia, it was premeditated, was applied for hours at a stretch and caused either actual bodily injury or intense physical and mental suffering, and also 'degrading' because it was such as to arouse in its victims feelings of fear, anguish and inferiority capable of humiliating and debasing them. In order for a punishment or treatment associated with it to be 'inhuman' or 'degrading', the suffering or humiliation involved must in any event go beyond that inevitable element of suffering or humiliation connected with a given form of legitimate treatment or punishment. The question whether the purpose of the treatment was to humiliate or debase the victim is a further factor to be taken into account ... but the absence of any such purpose cannot conclusively rule out a finding of violation of article 3."
I do not, of course, dissent from any of that, but it does not seem to me, with very great respect, to support what the President was saying.
"such as to arouse in its victims feelings of fear, anguish and inferiority capable of humiliating and debasing them" (emphasis added),
in Pretty the Court indicated that treatment was degrading where it
"humiliates or debases an individual showing a lack of respect for, or diminishing, his or her human dignity or arouses feelings of fear, anguish or inferiority capable of breaking an individual's moral and physical resistance" (emphasis added).
"there are circumstances where proof of the actual effect on the person may not be a major factor. For example treatment of a mentally ill person may be incompatible with the standards imposed by Article 3 in the protection of fundamental human dignity, even though that person may not be able, or capable of, pointing to any specific ill-effects."
"One can at least conclude from this that forcible measures inflicted upon an incapacitated patient which are not a medical necessity may indeed be inhuman or degrading. The same must apply to forcible measures inflicted upon a capacitated patient. I would hesitate to say which was worse: the degradation of an incapacitated person shames us all even if that person is unable to appreciate it, but in fact most people are able to appreciate that they are being forced to do something against their will even if they are not able to make the decision that it should or should not be done."
The question that Baroness Hale posed in her recent Paul Sieghart Memorial Lecture Why should it be acceptable to treat an incapacitated person in a way which would be degrading if done to a capacitated? surely admits of only one answer. It is not.
Article 2
"[29] If a decision to cease medical treatment in the best interests of the patient is to be characterised as intentional deprivation of life, in view of the absolute nature of the prohibition on intentional killing, Mr Emmerson submitted that there would be a duty in every case to take steps to keep a terminally ill patient alive by all means possible, and to continue those steps indefinitely, until the patient's body could no longer sustain treatment, irrespective of the circumstances or the prognosis. I agree with Mr Emmerson that such an interpretation of article 2 cannot be correct.
[30] Although the intention in withdrawing artificial nutrition and hydration in PVS cases is to hasten death, in my judgment the phrase "deprivation of life" must import a deliberate act, as opposed to an omission, by someone acting on behalf of the state, which results in death. A responsible decision by a medical team not to provide treatment at the initial stage could not amount to intentional deprivation of life by the state. Such a decision based on clinical judgment is an omission to act. The death of the patient is the result of the illness or injury from which he suffered and that cannot be described as a deprivation. It may be relevant to look at the reasons for the clinical decision in the light of the positive obligation of the state to safeguard life, but, in my judgment, it cannot be regarded as falling within the negative obligation to refrain from taking life intentionally. I cannot see the difference between that situation and a decision to discontinue treatment which is no longer in the best interests of the patient and would therefore be a violation of his autonomy, even though that discontinuance will have the effect of shortening the life of the patient.
[31] The analysis of these issues by the House of Lords in Bland's case [1993] AC 789 is entirely in accordance with the Convention case law on article 2 and is applicable to the distinction between negative and positive obligations. An omission to provide treatment by the medical team will, in my judgment, only be incompatible with article 2 where the circumstances are such as to impose a positive obligation on the state to take steps to prolong a patient's life."
"[35] The standard applied by the European Court of Human Rights bears a close resemblance to the standard adopted in the domestic law of negligence and approximates to the obligation recognised by the English courts in the Bolam test
[37] Article 2 therefore imposes a positive obligation to give life-sustaining treatment in circumstances where, according to responsible medical opinion, such treatment is in the best interests of the patient but does not impose an absolute obligation to treat if such treatment would be futile. This approach is entirely in accord with the principles laid down in Airedale NHS Trust v Bland [1993] AC 789
[38] In our use of the declaratory jurisdiction of the High Court in PVS cases we impose in our domestic law a higher test than the standard set by the European Court of Human Rights, since the High Court reviews the medical conclusion on best interests and may not necessarily accept the medical opinion."
In support of that last proposition she referred to what Sir Thomas Bingham MR had said in the passage from Frenchay Healthcare National Health Service Trust v S [1994] 1 WLR 601 at p 609 which I have already quoted and also to In re S (Adult Patient: Sterilisation) [2001] Fam 15.
"the applicants' allegations concerning the circumstances in which the first applicant was discharged from hospital do not disclose any appearance of a breach of the authorities' duty to protect the first applicant's right to life. The facts do not at all suggest that the Trust was not concerned with the first applicant's welfare on discharge, less so that he was callously abandoned into the second applicant's care. As to the decision not to readmit the first applicant to St Mary's Hospital, it notes that the Trust was anxious to make alternative arrangements for the future care of the first applicant before implementing its decision. For the Court, the decision not to re-admit the first applicant must be considered reasonable in the light of the breakdown in trust on both sides."
"In the Court's opinion, the applicants' complaints under Article 2 amount in effect to a criticism of the doctors' clinical judgment in the situation which arose, a situation which, in the applicants' view, could not be considered an emergency. However, it is not its function under Article 2 to gainsay the doctors' assessment of the first applicant's condition at the time, nor their decision to forego suction treatment in favour of the administration of diamorphine nor their view on the appropriate dose of diamorphine to be administered. These assessments and decisions were made against the background of the first applicant's state of health at the time, his recent case history and their perception that he was distressed and in pain and that steps needed to be taken to alleviate his respiratory difficulties.
It cannot be excluded that the acts and omissions of the authorities in the field of health care may in certain circumstances engage their responsibility under the positive limb of Article 2. However, the Court recalls that where a Contracting State has made adequate provision for securing high professional standards among health professionals and the protection of the lives of patients, matters such as error of professional judgment (even if established) on the part of a health professional in the treatment of a particular patient are not of themselves sufficient to call that State to account from the standpoint of its positive obligations under Article 2 of the Convention to protect life (see Powell v United Kingdom [unreported] 4 May 2000). Having regard to the detailed rules and standards laid down in the domestic law and practice of the respondent State in the area under consideration, it cannot be maintained that the relevant regulatory framework discloses any shortcomings which can lay the basis of an arguable claim of a breach of the domestic authorities' obligation to protect the first applicant's right to life."
"the standards developed within the medical profession and the relevant case-law of the domestic courts on issues such as consent to treatment or the use of "Do Not Resuscitate" notices confirm that any criticism levelled by the applicants against the respondent State's failure to protect life is unfounded."
Accordingly it rejected the complaint under Article 2 as being manifestly ill-founded.
"The Court accepts that it cannot be excluded that the acts and omissions of the authorities in the field of health care policy may in certain circumstances engage their responsibility under the positive limb of Article 2. However, where a Contracting State has made adequate provision for securing high professional standards among health professionals and the protection of the lives of patients, it cannot accept that matters such as error of judgment on the part of a health professional or negligent co-ordination among health professionals in the treatment of a particular patient are sufficient of themselves to call a Contracting State to account from the standpoint of its positive obligations under Article 2 of the Convention to protect life."
The Convention and the withdrawal of ANH
Conclusions
"It is ordered that in the events (i) that the medical condition of [J] changes in such a way that his life is threatened but is capable of being prolonged by the application to him of intensive therapeutic measures including artificial ventilation, and (ii) that he is at that time in the care of the . . . Area Health Authority, (iii) that the required drugs and equipment are or could reasonably be made available, the . . . Health Authority do cause such measures (including, if so required to prolong his life, artificial ventilation) to be applied to [J] for so long as they are capable of prolonging his life."
The health authority was given liberty to apply on short notice to vary or discharge the injunction. It appealed to the Court of Appeal.
"Doctors are free to hold differing views as to the appropriateness of particular treatment, provided such treatment lies within a professionally accepted norm. There is a public interest in preserving the professional integrity of doctors The judge's order challenges the doctor-patient relationship, and, if correct, enables a patient to insist on a particular medical course irrespective of his doctor's clinical opinion.
While a doctor who assumes clinical responsibility for a patient owes him a duty of care in relation to his proper treatment, a mandatory injunction compelling the provision of treatment would not be granted in an ordinary action for tort. An injunction will not in general be granted to compel performance of personal services or works requiring excessive supervision by the court.
It is impracticable, and unlikely to be in the patient's best interests, to compel a doctor to exercise his skill in a specified manner against his professional judgment. To require a doctor to provide specified treatment for one child is in effect to compel him to treat that child in preference to other children in need of that treatment. Further, the judge's order cannot stand since, apart from other considerations, it is too vague to be capable of compliance and in effect makes inappropriate directions for staff and resource distribution."
The Court of Appeal allowed the appeal and discharged the injunction.
"The fundamental issue in this appeal is whether the court in the exercise of its inherent power to protect the interests of minors should ever require a medical practitioner or health authority acting by a medical practitioner to adopt a course of treatment which in the bona fide clinical judgment of the practitioner concerned is contra-indicated as not being in the best interests of the patient. I have to say that I cannot at present conceive of any circumstances in which this would be other than an abuse of power as directly or indirectly requiring the practitioner to act contrary to the fundamental duty which he owes to his patient. This, subject to obtaining any necessary consent, is to treat the patient in accordance with his own best clinical judgment, notwithstanding that other practitioners who are not called upon to treat the patient may have formed a quite different judgment or that the court, acting on expert evidence, may disagree with him."
He added at p 28:
"The order of Waite J was wholly inconsistent with the law as so stated and cannot be justified upon the basis of any authority known to me. Furthermore it was, in my judgment, erroneous on two other substantial grounds, only slightly less fundamental than that to which I have just adverted. The first is its lack of certainty as to what was required of the health authority. The second is that it does not adequately take account of the sad fact of life that health authorities may on occasion find that they have too few resources, either human or material or both, to treat all the patients whom they would like to treat in the way in which they would like to treat them. It is then their duty to make choices.
The court when considering what course to adopt in relation to a particular child has no knowledge of competing claims to a health authority's resources and is in no position to express any view as to how it should elect to deploy them. Although the order is subject to the condition precedent that "the required drugs and equipment are or could reasonably be made available," it makes no reference to the availability of staff and it has to be borne in mind that artificial ventilation of a young child in an intensive care unit is highly intensive of highly skilled staff. It gives no guidance as to what is meant by the concept of being reasonably available, yet it is not difficult to imagine circumstances in which there could be bona fide differences of opinion as to whether equipment or staff was reasonably available. The health authority is entitled to object and does object to being subject to an order of the court with penal consequences in the event of disobedience when it does not know precisely what is required of it."
"I agree with Lord Donaldson of Lymington MR that I can conceive of no situation where it would be a proper exercise of the jurisdiction to make such an order as was made in the present case: that is to order a doctor, whether directly or indirectly, to treat a child in a manner contrary to his or her clinical judgment. I would go further. I find it difficult to conceive of a situation where it would be a proper exercise of the jurisdiction to make an order positively requiring a doctor to adopt a particular course of treatment in relation to a child, unless the doctor himself or herself were asking the court to make such an order. Usually all the court is asked, or needs, to do is to authorise a particular course of treatment where the person or body whose consent is requisite is unable or unwilling to do so."
He elaborated this at p 30:
"Apart from the obvious reasons for this limitation of the exercise of the jurisdiction, there is one other matter which should not be overlooked. The court is not, or certainly should not be, in the habit of making orders unless it is prepared to enforce them. If the court orders a doctor to treat a child in a manner contrary to his or her clinical judgment it would place a conscientious doctor in an impossible position. To perform the court's order could require the doctor to act in a manner which he or she genuinely believed not to be in the patient's best interests; to fail to treat the child as ordered would amount to a contempt of court. Any judge would be most reluctant to punish the doctor for such a contempt, which seems to me to be a very strong indication that such an order should not be made.
I would also stress the absolute undesirability of the court making an order which may have the effect of compelling a doctor or health authority to make available scarce resources (both human and material) to a particular child, without knowing whether or not there are other patients to whom those resources might more advantageously be devoted. Lord Donaldson of Lymington MR has set out in his reasons the condition of J and his very limited future prospects. The effect of the order of Waite J, had it not been immediately stayed by this court, might have been to require the health authority to put J on a ventilator in an intensive care unit, and thereby possibly to deny the benefit of those limited resources to a child who was much more likely than J to benefit from them. At the very least it would in those circumstances have required the health authority to make a further application to the court to vary or discharge the injunction."
"I can myself envisage no circumstances in which it would be right directly or indirectly to require a doctor to treat a patient in a way that was contrary to the doctor's professional judgment and duty to the patient.
A court can give or withhold a consent or authority such as might be given or withheld by a patient or a child's parent. But no reported case has been cited to the court in which any judge in any jurisdiction has ever purported to order a doctor to treat a patient in a particular way contrary to the doctor's will until Waite J made his order in the present case. The order which he in fact made was against the health authority requiring it to "cause such measures (including, if so required to prolong his life, artificial ventilation) to be applied to [the child] for so long as they are capable of prolonging his life." That was an order with which it was probably impossible for the health authority to comply, because it has no power, contractual or otherwise, to require doctors to act in a way which they do not regard as medically appropriate. If it could comply, it would be obliged to accord to this baby a priority over other patients to whom the health authority owes the same duties, but about whose interests the court is ignorant."
"If the doctors are for any reason unable to carry out the wishes of the patient, their duty is to find other doctors who will do so."
i) The requirement of prior judicial sanction in cases falling within what has come to be described as the "special category" was not a matter of law but rather a matter of good practice.
ii) Whether a particular case fell within the special category was determined solely by reference to the nature of the procedure: it made no difference that everyone involved was united in support of what was being proposed.
iii) The principle on which the requirement was founded was, as articulated in Airedale NHS Trust v Bland [1993] AC 789, "the protection of patients, the protection of doctors, the reassurance of patients' families and the reassurance of the public".
"[I]n cases of controversy and cases involving momentous and irrevocable decisions, the courts have treated as justiciable any genuine question as to what the best interests of a patient require or justify. In making these decisions the courts have recognised the desirability of informing those involved whether a proposed course of conduct will render them criminally or civilly liable; they have acknowledged their duty to act as a safeguard against malpractice, abuse and unjustified action; and they have recognised the desirability, in the last resort, of decisions being made by an impartial, independent tribunal."
"[32] I agree that it would be both impractical and unnecessary to require that in each case an application to the court be made for a declaration of lawfulness. In my view, where the issues of capacity and best interests are clear and beyond doubt, an application to the court is not necessary.
[33] However, there will be other circumstances in which the authorisation of the court is required in order to avoid any doubt as to the legitimacy of the Art 8 interference
[34] Accordingly, it is my view that where there is any doubt as to either capacity or best interests, an application to the court should be made. In particular, and without limiting the generality of that proposition, the following circumstances would ordinarily warrant the making of an application:
(i) where there is a dispute as to capacity, or where there is a realistic prospect that the patient will regain capacity, following a response to treatment, within the period of her pregnancy or shortly thereafter;
(ii) where there is a lack of unanimity amongst the medical professionals as to the best interests of the patient;
(iii) where the procedures under s 1 of the Abortion Act 1967 have not been followed (ie where two medical practitioners have not provided a certificate);
(iv) where the patient, members of her immediate family, or the foetus' father have opposed, or expressed views inconsistent with, a termination of the pregnancy; or
(v) where there are other exceptional circumstances (including where the termination may be the patient's last chance to bear a child).
[35] I would echo the words of Thorpe LJ in In re S (Adult Patient: Sterilisation) [2001] Fam 15 that if any case is considered to fall anywhere near the boundary line in relation to any one of the above criteria, it should for the avoidance of doubt be referred to the court."
He added at para [37]:
"The President has been aware of the process of this application and has seen this judgment in final draft. She authorises me to say that she agrees with the guidance outlined at para [34] above."
For the significance of such endorsement see Re V (Care Proceedings: Human Rights Claims) [2004] EWCA Civ 54, [2004] 1 FLR 944, at paras [6], [98].
"There are questions of judgment involved. There can be no doubt that the best course is for a parent of a child to agree on the course which the doctors are proposing to take, having fully consulted the parent and for the parent to fully understand what is involved. That is the course which should always be adopted in a case of this nature. If that is not possible and there is a conflict, and if the conflict is of a grave nature, the matter must then be brought before the court so the court can decide what is in the best interests of the child concerned. Faced with a particular problem, the courts will answer that problem."
Similar observations were made by the President, this time in relation to adults, in Re B (Consent to Treatment: Capacity) [2002] EWHC 429 (Fam), [2002] 1 FLR 1090, at para [100].
(a) where there is any doubt or disagreement as to the capacity (competence) of the patient; or
(b) where there is a lack of unanimity amongst the attending medical professionals as to either (i) the patient's condition or prognosis or (ii) the patient's best interests or (iii) the likely outcome of ANH being either withheld or withdrawn or (iv) otherwise as to whether or not ANH should be withheld or withdrawn; or
(c) where there is evidence that the patient when competent would have wanted ANH to continue in the relevant circumstances; or
(d) where there is evidence that the patient (even if a child or incompetent) resists or disputes the proposed withdrawal of ANH; or
(e) 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 for the Protection of Human Rights and Fundamental Freedoms 1950."
I respectfully agree, and would draw attention to Coleridge J's use of the word "enhanced".
"The Court considers that there are two limbs to the Article 6 issue. It notes in the first place that the applicants maintain that the Trust should have sought a High Court ruling before pressing ahead with the administration of diamorphine to the first applicant without the second applicant's consent. The applicants have not asserted that there were any legal barriers which restricted their access to the High Court. They criticise the Trust for not having invoked the jurisdiction of the High Court. The Government on the other hand aver that, in the circumstances, it would have been impossible for the Trust to have the doctors' proposed course of action approved by the High Court. For the Court, even assuming that a right of access to court issue arises in this context, the matter under consideration is more appropriately dealt with under Article 8."
On the other aspect of the matter the court said this (p 87):
"Secondly, the Court accepts the concern of the second applicant that the domestic courts in the judicial review proceedings did not pronounce on the unlawfulness of the Trust's decision to administer diamorphine to her son against her wishes or to refuse to treat him in the future. However, it considers that the domestic courts' unwillingness to be drawn on this question is understandable in the circumstances, having regard to the nature of the proceedings and to the factual dispute between the second applicant and the Trust over the first applicant's precise condition at the time and the correct manner of treating him. Although Article 6 guarantees an applicant a right to have a ruling on matters involving his civil rights which he submits to a domestic court, it must be accepted that domestic courts must have some degree of flexibility in framing their response to the issues put to them, provided of course that they do not abdicate the essence of their adjudicative function. In the instant case, it is to be observed that the domestic courts provided the second applicant with a clear statement of her right to seek the intervention of the High Court if, in the future, she were to find herself in conflict with the treatment proposed by doctors treating her son. The approach taken cannot be considered a denial of the applicants' right of access to a court; nor can the domestic courts' failure to pronounce on the Trust's refusal to treat the first applicant in the future be so considered. It is to be noted in this connection that satisfactory alternative hospital arrangements were secured for the first applicant with the help of the Trust."
"the decision to impose treatment on the first applicant in defiance of the second applicant's objections gave rise to an interference with the first applicant's right to respect for his private life, and in particular his right to physical integrity".
It commented in para [76] that:
"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."
It continued at para [79]:
"It has not been explained to the court's satisfaction why the Trust did not at that stage seek the intervention of the High Court. The doctors during this phase all shared a gloomy prognosis of the first applicant's capacity to withstand further crises. They were left in no doubt that their proposed treatment would not meet with the agreement of the second applicant. Admittedly, the second applicant could have brought the matter before the High Court. However, in the circumstances it considers that the onus was on the Trust to take the initiative and to defuse the situation in anticipation of a further emergency."
"[80] The court can accept that the doctors could not have predicted the level of confrontation and hostility which in fact arose following the first applicant's readmission to the hospital on 18 October 1998. However, insofar as the Government has maintained that the serious nature of the first applicant's condition involved the doctors in a race against time with the result that an application by the Trust to the High Court was an unrealistic option, it is nevertheless the case that the Trust's failure to make a High Court application at an earlier stage contributed to this situation.
[81] That being said, the court is not persuaded that an emergency High Court application could not have been made by the Trust when it became clear that that the second applicant was firmly opposed to the administration of a diamorphine to the first applicant. However, the doctors and officials used the limited time available to them in order to try to impose their views on the second applicant. It observes in this connection that the Trust was able to secure the presence of a police officer to oversee the negotiations with the second applicant but, surprisingly, did not give consideration to making a High Court application even though 'the best-interests procedure can be involved at short notice' (see the decision of Scott Baker J in the High Court proceedings )."
"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."
"reiterate[d] the importance of not erecting such legal barriers against the provision of medical treatment for incompetents that they are deprived of treatment which competent persons could reasonably expect to receive in similar circumstances. The law must not convert incompetents into second class citizens for the purposes of health care."
Summary of conclusions
(a) Once a patient has been received or admitted into a National Health Service hospital a duty to care arises a duty to provide and go on providing treatment , whether the patient is competent or incompetent, conscious or unconscious.
(b) Once the duty to care has arisen, the doctor and the hospital are under a continuing obligation that cannot lawfully be shed unless arrangements are made for the responsibility to be taken over by someone else.
(c) The duty to care is, in principle, a duty to provide that treatment which is in the best interests of the patient.
(d) The evaluation of a patient's best interests involves a welfare appraisal in the widest sense, taking into account, where appropriate, a wide range of ethical, social, moral, emotional and welfare considerations.
(e) Doctors can properly claim expertise on medical matters; but they can claim no special expertise on the many non-medical matters which go to form the basis of any decision as to what is in a patient's best interests. Medical opinion, however eminent, can never be determinative of what is in a patient's best interests.
(f) In the final analysis 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 in the final analysis it is for the court to decide what is in his best interests.
(g) Personal autonomy the right of self-determination and dignity are fundamental rights, recognised by the common law and protected by Articles 3 and 8 of the Convention.
(h) The personal autonomy which is protected by 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.
(i) The dignity interests protected by the Convention include, under Article 8, the preservation of mental stability and, under Article 3, the right to die with dignity and the right to be protected from treatment, or from a lack of treatment, which will result in one dying in avoidably distressing circumstances.
(j) An enhanced degree of protection is called for under Articles 3 and 8 in the case of the vulnerable.
(k) Treatment is capable of being "degrading" within the meaning of Article 3, whether or not there is awareness on the part of the victim. However unconscious or unaware of ill-treatment a particular patient may be, treatment which has the effect on those who witness it of degrading the individual may come within Article 3. It is enough if judged by the standard of right-thinking bystanders it would be viewed as humiliating or debasing the victim, showing a lack of respect for, or diminishing, his or her human dignity.
(l) A 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. Where the National Health Service has assumed responsibility for treating a terminally ill patient's condition and he has become reliant on the medical care he is receiving, there will prima facie be a breach of Article 3 if that care is removed in circumstances where this will subject him to acute mental and physical suffering and lead to him dying in avoidably distressing circumstances. Moreover, even if the patient's suffering does not reach the severity required to breach Article 3 a withdrawal of treatment in such circumstances may nonetheless breach Article 8 if there are sufficiently adverse effects on his physical and moral integrity or mental stability.
(m) 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. Important as the sanctity of life is, it has to take second place to personal autonomy.
(n) 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 in order to achieve what the patient believes conduces to his dignity and in order to avoid what the patient would find distressing. A competent patient's Article 8 rights his rights to physical and psychological integrity, to autonomy and dignity must prevail over any rights or obligations located in Articles 2 and 3. Any positive obligations of the State under Article 2 or Article 3 necessarily cease at the point at which they would otherwise come into conflict with or intrude into the competent patient's rights of autonomy and self-determination under Article 8. Article 3 does not entitle anyone to force life-prolonging treatment on a competent patient who refuses to accept it. Nor does Article 2.
(o) 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, 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.
(p) Reference to Article 2 does not add anything in this type of case. Article 2 does not entitle anyone to force life-prolonging treatment on a competent patient who refuses to accept it. 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 give rise to any breach of Article 2.
(q) There is nothing in In re J (A Minor) (Child in Care: Medical Treatment) [1993] Fam 15 which stands in the way of the enforcement in accordance with sections 7 and 8 of the Human Rights Act 1998 of a patient's rights under Articles 3 and 8.
(r) Accepting for present purposes that the court will not grant a mandatory order requiring an individual doctor to treat a patient, this does not mean that a doctor can simply decline to go on treating his patient merely because his views as to what is in his patient's best interests differ from those of the patient or the court. A competent patient, properly advised by a doctor, may elect to choose a form of treatment which is not the one that the doctor would recommend. But this does not release the doctor from his continuing duty to care for his patient, unless perhaps, that is, he finds himself conscientiously unable to do so. In any event, if a doctor is for any reason unable to carry out the wishes of his patient, his duty is to find another doctor who will do so.
(s) The fact that the court will not make a mandatory order against a doctor is no reason why in principle it should not in an appropriate case grant declaratory relief against him. Nor is it any reason why the court should not in an appropriate case grant both declaratory and mandatory relief against a NHS trust or other health authority. Thus the court can by appropriate orders ensure that a patient who ought to be treated is, if need be, transferred to the care of doctors who are willing to do so.
(t) A NHS trust or other health authority, being a public authority for the purposes of the Human Rights Act 1998, can be required to arrange for the treatment to be commenced or continued by other doctors willing to do so where this is necessary in order to prevent what would otherwise be a breach of the patient's Convention rights. The court can grant appropriate declaratory relief or, if the NHS trust's refusal to arrange treatment is unlawful, grant appropriate mandatory and other remedies by way of judicial review and/or under the Human Rights Act 1998.
(a) Under the Convention, as at common law, 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 his decision that ANH not be started or, if started, that it be stopped is determinative.
(b) 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 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 likewise in principle determinative. There are two separate reasons why this is so. The first is based on the competent patient's rights under Article 8. The second is based on his rights, whether competent or incompetent, under Article 3.
(c) Given what I have to assume would by then be his clearly expressed wishes, embodied in an advance directive both valid and relevant to the treatment in question, to withdraw ANH at any stage before the claimant finally lapses into a coma would in principle involve clear breaches of both Article 8 and Article 3; for it is clear that if ANH were to be withdrawn he would be exposed to acute mental and physical suffering.
(d) The position of an incompetent patient is likely in practical terms to be the same. It is impossible to imagine that an incompetent, albeit sentient, patient will have any less call at this stage on the protection of Article 3 than the claimant. If ANH 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. But far from the provision of ANH making the patient's life intolerable its withdrawal will expose the patient to acute mental and physical suffering and thus breach Article 3.
(e) Indeed, I find it hard to envisage any circumstances (other, perhaps, than those envisaged by Professor Higginson) in which a withdrawal of ANH in such circumstances that is from a sentient patient, whether competent or incompetent could be compatible with the Convention.
(f) But the position will be different once the claimant has entered into the final stage and has finally lapsed into a coma. Assuming that the patient is otherwise being treated with dignity, and in a manner which is in all other respects compatible with his rights under Article 3 and Article 8, there will not be any breach either of Article 3 or of Article 8 or of Article 2 if ANH is withdrawn in circumstances where it is 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 lacks all awareness of what is happening. For it can then properly be said that the continuation of ANH would be bereft of any benefit at all to the patient and that it would indeed be futile.
(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.
Discussion
Relief
(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 (2) 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 (3) 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 interests;
(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.
Extracts from "Withholding and Withdrawing Life-Prolonging Treatments"
Part 1: Guiding principles
Respect for human life and best interests
9 Doctors have an ethical obligation to show respect for human life; protect the health of their patients; and to make their patients' best interests their first concern. This means offering those treatments where the possible benefits outweigh any burdens or risks associated with the treatment, and avoiding those treatments where there is no net benefit to the patient.
10 Benefits and burdens for the patient are not always limited to purely medical considerations, and doctors should be careful, particularly when dealing with patients who cannot make decisions for themselves, to take account of all the other factors relevant to the circumstances of the particular patient. It may be very difficult to arrive at a view about the preferences of patients who cannot decide for themselves, and doctors must not simply substitute their own values or those of the people consulted.
11 Prolonging life will usually be in the best interests of a patient, provided that the treatment is not considered to be excessively burdensome or disproportionate in relation to the expected benefits. Not continuing or not starting a potentially life-prolonging treatment is in the best interests of a patient when it would provide no net benefit to the patient. In cases of acute critical illness where the outcome of treatment is unclear, as for some patients who require intensive care, survival from the acute crisis would be regarded as being in the patient's best interests.
Adult patients who can decide for themselves
13 Adult competent patients have the right to decide how much weight to attach to the benefits, burdens, risks, and the overall acceptability of any treatment. They have the right to refuse treatment even where refusal may result in harm to themselves or in their own death, and doctors are legally bound to respect their decision. Adult patients who have the capacity to make their own decision can express their wishes about future treatment in an advance statement.
Adult patients who cannot decide for themselves
14 Any valid advance refusal of treatment one made when the patient was competent and on the basis of adequate information about the implications of his/her choice is legally binding and must be respected where it is clearly applicable to the patient's present circumstances and where there is no reason to believe that the patient had changed his/her mind.
15 Where adult patients lack capacity to decide for themselves, an assessment of the benefits, burdens and risks, and the acceptability of proposed treatment must be made on their behalf by the doctor, taking account of their wishes, where they are known. Where a patient's wishes are not known it is the doctor's responsibility to decide what is in the patient's best interests. However, this cannot be done effectively without information about the patient which those close to the patient will be best placed to know
Choosing between options: difference of view about best interests
16 Applying these principles may result in different decisions in each case, since patients' assessments of the likely benefits and burdens or risks, and what weight or priority to give to these, will differ according to patients' different values, beliefs and priorities. Doctors must take account of patients' preferences when providing treatment. However, where a patient wishes to have a treatment that in the doctor's considered view is not clinically indicated, there is no ethical or legal obligation on the doctor to provide it. Where requested, patients' right to a second opinion should be respected.
17 Where a patient lacks capacity to decide, the doctor, health care team or those close to the patient involved in making the decision, may reach different conclusions about the patient's preferences and what course of action might be in the patient's best interests. In these cases it is important to take time to try to reach a consensus about treatment and it may be appropriate to seek a second opinion, or other independent or informal review.
18 In the rare circumstances where any significant disagreement about best interests cannot be resolved, legal advice should be sought on whether it is necessary to apply to the court for a ruling
Artificial nutrition and hydration
22 Decisions involving artificial nutrition or hydration may be particularly difficult and/or contentious. In part this is because the benefits and burdens of either nutrition or hydration may not be well known and involve difficult assessments of the patient. For example, patients in the later stages of a progressive or severely disabling condition, where their body systems begin to shut down, may increasingly lose interest in food or drink. For some patients not taking nutrition or hydration may be part of the natural dying process. Problems in making assessments can arise because some patients may under-report their symptoms, while perceptions may differ between doctors, members of the health care team and those close to a patient, about the presence or severity of symptoms such as pain.
23 In the face of such uncertainties, there may be concern about the possibility that a patient who is unconscious or semi-conscious, and whose wishes cannot be determined, might experience distressing symptoms and complications or otherwise be suffering, because their needs for nutrition or hydration are not being met. Alternatively there may be concern that attempts to meet the patient's needs may cause avoidable suffering. For some people there may be emotional difficulties in deciding not to provide what they see as basic nurture for the patient.
24 In view of these considerations, it is essential that doctors ensure that those involved in making the decision are provided with clear and up to date information about what is known of the benefits, burdens and risks of providing nutrition and hydration through artificial means, and information about the basis on which the particular patient's needs have been assessed. It is also essential that doctors making decisions about artificial nutrition and hydration take careful account of the principles of good practice set out in this guidance (see also advice at paragraphs 78-83).
Non-discrimination
25 Doctors have a duty to give priority to patients on the basis of clinical need, while seeking to make the best use of resources using up to date evidence about the clinical efficacy of treatments. Doctors must not allow their views about, for example, a patient's age, disability, race, colour, culture, beliefs, sexuality, gender, lifestyle, social or economic status to prejudice the choices of treatment offered or the general standard of care provided.
Care for the dying
26 Patients who are dying should be afforded the same respect and standard of care as all other patients. Patients and their families and others close to them should be treated with understanding and compassion. Where the likely progression of a patient's condition is known, and their death is seen as an inevitable outcome, it is important to ensure that the patient's palliative care or terminal care needs are identified and met appropriately. This should include consideration of their wishes regarding such matters as the appropriate place for receiving care (which may affect the treatment options available), and their needs for religious, spiritual or other personal support. Every attempt should be made to ensure that they are afforded privacy, dignity, and good quality care in comfortable surroundings. This includes assessment of, and adequate relief from, pain and other distressing symptoms, and appropriate support and nursing care.
27 Discussion about the dying process allows patients the opportunity they may want to decide what arrangements should be made to manage the final stages of their illness, and to attend to personal and other concerns that they consider important towards the end of their life.
Conscientious objections
28 Where a decision to withhold or withdraw life-prolonging treatment has been made by a competent adult patient, or made by the senior clinician responsible for the care of a patient who lacks capacity to decide (following discussions with those close to the patient and the health care team) doctors who have a conscientious objection to the decision may withdraw from the care of that patient. In doing so they must ensure, without delay, that arrangements have been made for another suitably qualified colleague to take over their role, so that the patient's care does not suffer.
29 Junior doctors in this position must make their conscientious objection known to the doctor responsible for the patient's care who should then ensure that arrangements are made for another colleague to take over from the junior doctor.
Part 2: Good practice framework
Clinical responsibility for decisions
32 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.
Options for treatment
37 You must reach a considered judgement on the likely clinical and personal benefits, burdens and risks, for the particular patient, of each of the treatment (or non-treatment) options identified.
38 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.
Choosing between options: patients who can decide for themselves
Seeking the patient's views
41 Where a patient has the capacity to decide, you must raise with the patient the need to discuss your conclusions about diagnosis, prognosis and which options you consider may be in the patient's best interests. It is for the patient to judge what weight or priority to give to any benefits, burdens or risks; and to decide whether any of the options would be acceptable.
42 You should bear in mind that you are bound to respect an adult patient's competently made refusal of treatment even where complying with the decision will lead to the patient's death. If a specific treatment is requested which, in your considered view is clinically inappropriate, you are not legally or ethically bound to provide it. However, you should give the patient a clear explanation of the reasons for your view, and respect their request to have a second opinion.
Choosing between options: patients who cannot decide for themselves
Resolving disagreements about best interests
58 It is usually possible to reach a consensus about treatment, given adequate time for discussions between the parties. Individuals may be helped by the opportunity to consult others, medical or non-medical, whose views they respect. In complex cases where it is difficult to reach agreement, or cases where particular individuals participating in the decision-making advance strong arguments as to why an option may be considered controversial, you may also find it helpful to seek multi-disciplinary clinical or ethical review, independent of the healthcare team.
59 Where informal review fails to resolve any significant disagreement, you must seek legal advice. This may be available from your Trust or other employing organisation, or your defence body Patients, or those close to the patient where appropriate, should be informed as early as possible of any decision to seek independent review or a legal opinion, so that they have the opportunity to participate or can be represented.
Areas for special consideration Artificial nutrition and hydration
78 Where a patient has a problem in taking fluids or food orally, you must carry out an appropriate assessment of their condition and their particular requirements for nutrition or hydration. There are a number of means which you should consider for meeting the patient's assessed needs, including nasogastric tube, percutaneous endoscopic gastrostomy (gastric 'PEG'), subcutaneous hydration, or intravenous cannula, all commonly termed 'artificial' nutrition or hydration. However, the benefits and burdens are different for artificial nutrition and artificial hydration and you should assess these separately. In doing so you should take and follow up to date professional advice on the particular clinical considerations affecting respectively artificial nutrition and artificial hydration.
79 In all cases you should assess the patient for the presence of distressing symptoms, for example signs of pain, breathing difficulties, confusion, and dry mouth. Symptoms should be alleviated appropriately following up to date professional guidance.
80 In deciding which of the options for providing artificial nutrition or hydration are appropriate in meeting a patient's assessed need, you must ensure that the patient (where able to decide), the health care team, and those close to the patient (where the patient's wishes cannot be determined), are fully involved in the decision making. You should take appropriate steps to help those participating in the decision making to understand your assessment of the patient's requirements for nutrition or hydration, and any uncertainties underlying the options you consider appropriate for meeting those needs.
81 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, and the prognosis so poor that providing artificial nutrition or 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 (who might be from another discipline such as nursing) who has experience of the patient's condition and who is not already directly involved in the patient's care. This will ensure that, in a decision of such sensitivity, the patient's interests have been thoroughly considered, and will provide necessary reassurance to those close to the patient and to the wider public.
It can be extremely difficult to estimate how long a patient will live, especially for patients with multiple underlying conditions. Expert help in this should be sought where you, or the health care team, are uncertain about a particular patient.
82 Where significant conflicts arise about whether artificial nutrition or hydration should be provided, either between you and other members of the health care team or between the team and those close to the patient, and the disagreement cannot be resolved after informal or independent review, you should seek legal advice on whether it is necessary to apply to the court for a ruling.
Note 1 In referring to this work I naturally draw attention to what Megarry J said in Cordell v Second Clanfield Properties Ltd [1969] 2 Ch 9 at p 16. [Back] Note 2 Mr Wolfe suggests and I am inclined to agree that, reading the passage as a whole, this should be or not and. [Back] Note 3 See also to the same effect the linked case of V v United Kingdom (1999) 30 EHRR 121 at para [71]. [Back]