THE HON MR JUSTICE BAKER
This judgment is being handed down in private on 28 September 2011. It consists of 76 pages and has been signed and dated by the judge. The judge hereby gives leave for it to be reported.
The judgment is being distributed on the strict understanding that in any report no person other than the advocates or the solicitors instructing them (and other persons identified by name in the judgment itself) may be identified by name or location and that in particular the anonymity of M, W, B and S and members of their family must be strictly preserved.
Strand, London, WC2A 2LL
B e f o r e :
| W (by her litigation friend, B)
|- and -
|M (by her litigation friend, the Official Solicitor)
|- and -
|A NHS Primary Care Trust
Caroline Harry Thomas QC and Katherine Apps (instructed by the Official Solicitor) for M
Bridget Dolan (instructed by Beachcroft LLP) for the Primary Care Trust
S was present for part of the hearing but not represented
Hearing dates: 18th to 22nd and 25th to 29th July and 1st August 2011
Crown Copyright ©
THE HON MR JUSTICE BAKER
"It is clear to me that M has a high[er] level of responses than previously identified. Because of the lack of consistency and the inability to use them, as yet, for communication purposes, this places her in the diagnostic category of minimally conscious state but at a moderate level of MCS. I say moderate level to indicate that these are not simple responses but are indicating some sophistication in the response level in summary, it is clear to me that she is NOT in the vegetative state. Moreover, she is making responses at a level that must raise the possibility that she will eventually be able to communicate. In view of this, it is my opinion that she requires the opportunity of access to a team very experienced in the assessment on management of people with this level of profound neurological disability."
"During the initial examination, it was quite apparent that M was not in a vegetative state by demonstrating the ability to respond purposefully to a simple command. She displayed marked hypersensitivity, as squeezed her eyes tightly shut most of the time. When her eyelids were held open, the pupils were both equal and reactive to light, the gaze was not divergent, nor was there any mystagmus noted. In fact, there was evidence of eye tracking and fair fixation of gaze. There were interspersed vocalisations, consisting with mostly of unintelligible groans, but not as a response to a painful or noxious stimulus."
However, the hospital was unable to make progress in M's rehabilitation. At the conclusion of her stay at Putney the unit concluded that
"Despite showing islets of ability to respond to basic commands, and hence selected awareness of certain aspects of her external environment, M was not demonstrating a consistency of high level response which could be incorporated into function. Her responses remained non-functional".
They therefore concluded that no further therapeutic intervention was appropriate at that stage. However, it was advised that the occupational therapist at the Putney Hospital should provide interaction guidelines for M to be followed by those responsible for her daily care and treatment.
DISORDERS OF CONSCIOUSNESS AND THE PROCESS OF DIAGNOSIS
"this disorder is characterised by the complete absence of behavioural evidence for awareness of self and environment, with preserved capacity for spontaneous or stimulus-induced arousal . [A]ll of the following criteria must be met to establish the diagnosis of VS: (1) No evidence of awareness of self or environment. (2) No evidence of sustained, reproducible, purposeful or voluntary behavioural responses to visual, auditory, tactile or noxious stimuli. (3) No evidence of language comprehension or expression. (4) Intermittent wakefulness manifested by the presence of sleep-wake cycles (i.e. periods of eye-opening). (5) Sufficient preservation of autonomic functions to permit survival with adequate medical care. (6) Bowel and bladder incontinence. (7) Variable preservation of cranial nerve and spinal reflexes." (Giacino and Kalmar (2005) "Diagnostic and prognostic guidelines for the vegetative and minimally conscious states", Neuropsychological Rehabilitation 15(3/4) 166-174)
"a condition of severely altered consciousness in which minimal but definite behavioural evidence of self or environmental awareness is demonstrated". The Aspen Group defined the diagnostic criteria for MCS, so as to distinguish it from VS, by "the presence of behaviours associated with conscious awareness. In MCS, cognitively mediated behaviour occurs inconsistently, but is reproducible or sustained long enough to be differentiated from reflexive behaviour. The reproducibility of such evidence is affected by both the consistency and complexity of the behavioural response. Extended assessment may be required to determine whether a simple response (e.g. finger movement or eye blink), that is observed infrequently is occurring in response to a specific environmental event (e.g. command to move fingers or blink eyes) or on a coincidental basis. In contrast, a few observations of a complex response (intelligible verbalisation) may be sufficient to determine the presence of consciousness."
- Following simple commands
- Gestural or verbal yes/no responses (regardless of accuracy)
- Intelligible verbalisation
- Purposeful behaviour, including movements of affective behaviours that occur in contingent relation to relevant environmental stimuli and are not due to reflexive activity. Some examples of qualifying purposeful behaviour include
-appropriate smiling or crying in response to the linguistic or visual content of emotional but not to neutral topic or stimuli
-vocalisations or gestures that occur in direct response to the linguistic content of questions
-reaching for objects that demonstrates a clear relationship between object location and direction of reach
-touching or holding objects in a manner that accommodates the size and shape of the object
-pursuit eye movement or sustained fixation that occurs in direct response to moving or salient stimuli."
"Consciousness cannot be directly observed. Therefore, clinical assessment of persons with disorders of consciousness relies on observing behaviour and drawing inferences about the underlying state of consciousness.
Detection of behavioural signs of consciousness is subject to interrater variability and is often confounded by unpredictable fluctuations in arousal, underlying sensorimotor impairment, unrecognised cognitive and language deficits, and sedating medications. Even where there is agreement about the behaviour observed, there may be assessor variability when inferring consciousness."
"The WHIM is an objective tool. Operational definitions for each behaviour state clearly the criteria by which a behaviour is judged to occur. The disadvantage of the definitions is that they may be perceived as rigid and preclude recording of significant behaviours which do not reach these criteria" (Shiel et al "The WHIM main scale: a preliminary report of the scale to assess and monitor patient recovery after severe brain injury" (2000) Clinical Rehabilitation, 14: 408-416).
In oral evidence, Professor Turner-Stokes pointed out that the WHIM, which is now over ten years old, is "in need of an overhaul. Some of the assumptions underpinning it as to the significance of certain behaviours (for example, smiling) need rethinking". Experience has shown that some of the types of behaviour are in the wrong position in the hierarchy, which require adjustments to be made when analysing the results of the assessment. Mr. Badwan was more sceptical of the utility of the WHIM in assessing patients in MCS. I accept the view of Professor Turner-Stokes, however, that the WHIM will remain an important assessment tool, particularly when used in conjunction with the SMART and over time, especially at the higher levels of consciousness.
Origins of the declaratory jurisdiction
"there are great dangers in a court grappling with issues when these are divorced from a factual context that requires their determination. The court should not be used as a general advice centre. The danger is that the court will enunciate propositions of principle without full appreciation of the implications that these will have in practice, throwing into confusion those who feel obliged to attempt to apply those principles in practice. This danger is particularly acute where the issues raised involve ethical questions that any court should be reluctant to address, unless driven to do so by the need to resolve a practical problem that requires the court's intervention."
"The substantive law is that a proposed operation is lawful if it is in the best interests of the patient, and unlawful if it is not. What is required from the court, therefore, is not an order giving approval to the operation, so as to make lawful that which would otherwise be unlawful. What is required from the court is rather an order which establishes by judicial process whether the proposed operation is in the best interests of the patient and therefore lawful, or not in the patient's best interests and therefore unlawful."
The House further stated that the standard which the court should apply in deciding whether a proposed operation was or was not medically in the best interests of the patient was the test laid down in Bolam v Friern Hospital Management Committee  1 WLR 582, namely, that it is in accordance with a practice accepted at the time by a responsible body of medical opinion skilled in the particular form of treatment in question (per Lord Brandon at page 68). The House of Lords stressed, however, that the ultimate decision as to whether the proposed treatment is in the patient's best interests is a matter for the court. "In all proceedings where expert opinions are expressed, those opinions are listened to with great respect; but, in the end, the validity of the opinion has to be weighed and judged by the court" (per Lord Goff of Chieveley at page 80).
The decision in Bland
"[T]he fundamental principle is the principle of the sanctity of human life a principle long recognised not only in our own society but also in most, if not all, civilised societies throughout the modern world, as is indeed evidenced by its recognition both in article 2 of the European Convention for the Protection of Human Rights and Fundamental Freedoms (1953) (Cmd. 8969), and in article 6 of the International Covenant of Civil and Political Rights 1966. But this principle, fundamental though it is, is not absolute. Indeed there are circumstances in which it is lawful to take another man's life, for example by a lawful act of self-defence . [T]here is no absolute rule that the patient's life must be prolonged by such treatment or care, if available, regardless of the circumstances. First, 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 . Moreover 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: see, e.g., In re T. (Adult: Refusal of Treatment)  Fam 95 . But in many cases not only may the patient be in no condition to be able to say whether or not he consents to the relevant treatment or care, but also he may have given no prior indication of his wishes with regard to it. In the case of a child who is a ward of court, the court itself will decide whether medical treatment should be provided in the child's best interests, taking into account medical opinion. But the court cannot give its consent on behalf of an adult patient who is incapable of himself deciding whether or not to consent to treatment. I am of the opinion that there is nevertheless no absolute obligation upon the doctor who has the patient in his care to prolong his life, regardless of the circumstances. Indeed, it would be most startling, and could lead to the most adverse and cruel effects upon the patient, if any such absolute rule was held to exist. It is scarcely consistent with the primacy given to the principle of self-determination in those cases in which the patient of sound mind has declined to give his consent, that the law should provide no means of enabling treatment to be withheld in appropriate circumstances where the patient is in no condition to indicate, if that was his wish, that he did not consent to it." (pp 863-5)
"I return to the patient who, because for example he is of unsound mind or has been rendered unconscious by accident or by illness, is incapable of stating whether or not he consents to treatment or care. In such circumstances, it is now established that a doctor may lawfully treat such a patient if he acts in his best interests, and indeed that, if the patient is already in his care, he is under a duty so to treat him: see In re F. (Mental Patient: Sterilisation)  AC 1, in which the legal principles governing treatment in such circumstances were stated by this House. For my part I can see no reason why, as a matter of principle, a decision by a doctor whether or not to initiate, or to continue to provide, treatment or care which could or might have the effect of prolonging such a patient's life, should not be governed by the same fundamental principle. 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 . 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 . It is of course the development of modern medical technology, and in particular the development of life support systems, which has rendered cases such as the present so much more relevant than in the past. Even so, where (for example) a patient is brought into hospital in such a condition that, without the benefit of a life support system, he will not continue to live, the decision has to be made whether or not to give him that benefit, if available. That decision can only be made in the best interests of the patient. No doubt, his best interests will ordinarily require that he should be placed on a life support system as soon as necessary, if only to make an accurate assessment of his condition and a prognosis for the future. But if he neither recovers sufficiently to be taken off it nor dies, the question will ultimately arise whether he should be kept on it indefinitely. As I see it, that question (assuming the continued availability of the system) can only be answered by reference to the best interests of the patient himself, having regard to established medical practice. Indeed, if the justification for treating a patient who lacks the capacity to consent lies in the fact that the treatment is provided in his best interests, it must follow that the treatment may, and indeed ultimately should, be discontinued where it is no longer in his best interests to provide it." (pp 866-867).
"a distinction may be drawn between (1) cases in which, having regard to all the circumstances (including, for example, the intrusive nature of the treatment, the hazards involved in it, and the very poor quality of the life which may be prolonged for the patient if the treatment is successful), it may be judged not to be in the best interests of the patient to initiate or continue life-prolonging treatment, and (2) cases such as the present in which, so far as the living patient is concerned, the treatment is of no benefit to him because he is totally unconscious and there is no prospect of any improvement in his condition. In both classes of case, the decision whether or not to withhold treatment must be made in the best interests of the patient. In the first class, however, the decision has to be made by weighing the relevant considerations. For example, in In re J. (A Minor) (Wardship: Medical Treatment  Fam 33, the approach to be adopted in that case was stated by Taylor L.J. as follows, at p. 55: '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.' With this class of case, however, your Lordships are not directly concerned in the present case; and though I do not wish to be understood to be casting any doubt upon any of the reported cases on the subject, nevertheless I must record that argument was not directed specifically towards these cases, and for that reason I do not intend to express any opinion about the precise principles applicable in relation to them. By contrast, in the latter class of case, of which the present case provides an example, there is in reality no weighing operation to be performed. Here the condition of the patient, who is totally unconscious and in whose condition there is no prospect of any improvement, is such that life-prolonging treatment is properly regarded as being, in medical terms, useless .[F]or my part I cannot see that medical treatment is appropriate or requisite simply to prolong a patient's life, when such treatment has no therapeutic purpose of any kind, as where it is futile because the patient is unconscious and there is no prospect of any improvement in his condition. It is reasonable also that account should be taken of the invasiveness of the treatment and of the indignity to which, as the present case shows, a person has to be subjected if his life is prolonged by artificial means, which must cause considerable distress to his family - a distress which reflects not only their own feelings but their perception of the situation of their relative who is being kept alive. But in the end, in a case such as the present, it is the futility of the treatment which justifies its termination" (pp 868-9).
"A person is completely at liberty to decline to undergo treatment, even if the result of his doing so will be that he will die. This extends to the situation where the person, in anticipation of his, through one cause or another, entering into a condition such as PVS, gives clear instructions that in such event he is not to be given medical care, including artificial feeding, designed to keep him alive" (p 857)'
"there is overwhelming evidence that, in the medical profession, artificial feeding is regarded as a form of medical treatment; and even if it is not strictly medical treatment, it must form part of the medical care of the patient. Indeed, the function of artificial feeding in the case of Anthony, by means of a nasogastric tube, is to provide a form of life support analogous to that provided by a ventilator which artificially breathes air in and out of the lungs of a patient incapable of breathing normally, thereby enabling oxygen to reach the bloodstream. The same principles must apply in either case when the question is asked whether the doctor in charge may lawfully discontinue the life-sustaining treatment or care; and if in either case the treatment is futile in the sense I have described, it can properly be concluded that it is no longer in the best interests of the patient to continue it."
Case law following Bland
"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."
"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."
"in deciding what is best . the judge must have regard to . 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 infinite variety of the human condition never ceases to surprise and it is that fact that defeats any attempt to be more precise in a definition of best interests."
" when considering whether to withhold or withdraw ANH from an incompetent patient, (1) the assessment of best interests has to be made from the point of view or perspective of the particular patient and (2) the touchstone of best interests in this context is intolerability."
Shortly after Munby J's decision in Burke at first instance, the "intolerability" test received apparent endorsement by Brooke LJ in the Court of Appeal in W Healthcare NHS Trust v H  EWCA Civ 1324,  1 WLR 834. When, however, the Burke case itself arrived in the Court of Appeal a few months later, (reported at  EWCA Civ 1003,  QB 273) Lord Phillips of Worth Matravers MR, giving the judgment of the court, commented (at paragraph 63): "we do not think it possible to attempt to define what is in the best interests of a patient by a single test". This view was subsequently reiterated in another case in that Court, namely Portsmouth Hospitals NHS Trust v Wyatt  EWCA Civ 1181,  1 WLR 3995. Giving the judgment of the Court, Wall LJ (as he then was) noted at para 76 that the dicta cited from Re B in support of the intolerability test had been ex tempore and not approved by the majority in Re J, that the observations of Brooke LJ in W Healthcare NHS Trust v H had been obiter and immaterial to the disposal of the appeal in that case, and that Hedley J at first instance in the Wyatt case had been right to see the "intolerability" concept as neither a gloss nor a supplementary test to best interests but, at most, a valuable guide in the search for best interests. Wall LJ concluded:
"the forensic debate should, in our judgment, be unfettered by any potentially contentious glosses on the best interests test which are likely either inappropriately to shift the focus of the debate, or to restrict the broad exercise of the judicial discretion involved in balancing the multifarious factors in the case."
The Mental Capacity Act 2005
"(1) In determining for the purposes of this Act what is in a person's best interests, the person making the determination must not make it merely on the basis of (a) the person's age or appearance or (b) a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about what might be in his best interests.
(2) The person making the determination must consider all the relevant circumstances and, in particular, take the following steps.
(3) He must consider (a) whether it is likely that the person will at some time have the capacity in relation to the mater in question, and (b) if it appears likely that he will, when that is likely to be.
(4) He must, so far as reasonably practicable, permit and encourage the person to participate, or improve his ability to participate, as fully as possible in any act done for him and any decision affecting him.
(5) Where the determination relates to life-sustaining treatment he must not, in considering whether the treatment is in the best interests of the person concerned, be motivated by a desire to bring about his death.
(6) He must consider, so far as is reasonably ascertainable, (a) the person's past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity); (b) the beliefs and values that would be likely to influence his decision if he had capacity, and (c) the other factors that he would be likely to consider if he were able to do so.
(7) He must take into account, if it is practicable and appropriate to consult them, the views of (a) anyone named by the person as someone to be consulted on the matter in question or on matters of that kind; (b) anyone engaged in caring for the person or interested in his welfare; (c) any donee of a lasting power of attorney granted by the person, and (d) any deputy appointed by the court."
"All reasonable steps which are in the person's best interests should be taken to prolong their life. There will be a limited number of cases where treatment is futile, overly burdensome to the patient or where there is no prospect of recovery. In circumstances such as these, it may be that an assessment of best interests leads to the conclusion that it would be in the best interests of the patient to withdraw or withhold life-sustaining treatment, even if this may result in the person's death. The decision-maker must make a decision based on the best interests of the person who lacks capacity. They must not be motivated by a desire to bring about the person's death for whatever reason, even if this is from a sense of compassion. Healthcare and social care staff should also refer to relevant professional guidance when making decisions regarding life-sustaining treatment."
"In setting out the requirements for working out a person's 'best interests', section 4 of the Act puts the person who lacks capacity at the centre of the decision to be made. Even if they cannot make the decision, their wishes and feelings, beliefs and values should be taken fully into account whether expressed in the past or now. But their wishes and feelings, beliefs and values will not necessarily be the deciding factor in working out their best interests. Any such assessment must consider past and current wishes and feelings, beliefs and values alongside all other factors, but the final decision must be based entirely on what is in the person's best interests."
"Doctors must apply the best interests' checklist and use their professional skills to decide whether life-sustaining treatment is in the person's best interests. If the doctor's assessment is disputed and there is no other way of resolving the dispute, ultimately the Court of Protection may be asked to decide what is in the person's best interests."
The Official Solicitor submits that the Code in this instance does not accurately reflect the law. The accuracy or otherwise of the Code is not a matter on which I have heard detailed submissions, and its impact on other types of treatment does not fall to be considered in this application. So far as ANH is concerned, the legal position has been clear since the decision in Bland and is as set out in the Practice Direction: all decisions about the proposed withholding or withdrawal of ANH from a person in a PVS or MCS should always be brought to the court.
"Care will of course have to be taken to ensure that such anticipatory declarations of wishes still represent the wishes of the patient. Care must be taken to investigate how long ago the expression of wishes was made. Care must be taken to investigate with what knowledge the expression of wishes was made. All the circumstances in which the expression of wishes was given will of course have to be investigated."
In the case of Re AK, which concerned a young man suffering from motor neurone disease, the judge was satisfied that his expressions of wishes were "recent and made not on any hypothetical basis but in the fullest possible knowledge of impending reality".
" a decision made by a person ('P') after he has reached 18 and when he has capacity to do so, that if (a) at a later time and in such circumstances as he may specify, a specified treatment is proposed to be carried out or continued by a person providing health care for him, and (b) at that time he lacks capacity to consent to the carrying out or continuation of the treatment, the specified treatment is not to be carried out or continued".
So far as formalities are concerned, a distinction is drawn between those treatments that are life-sustaining and those that are not. In the case of the latter, no formality is required, and s.24(3) provides that "a decision may be regarded as specifying a treatment or circumstances even though expressed in layman's terms". In the case of life-sustaining treatment, however, s.25(5) and (6) provide that an advance decision is not applicable unless it is verified by a statement to the effect that it is to apply to that treatment even if life is at risk, and further that both the decision and statement must be in writing and signed by P or another person in P's presence and by P's direction, in the presence of a witness who also has signed the decision and the statement of verification. S.25(4) provides that
"an advance decision is not applicable to the treatment in question if (a) that treatment is not the treatment specified in the advance decision, (b) any circumstances specified in the advance decision are absent, or (c) there are reasonable grounds for believing that circumstances exist which P did not anticipate at the time of the advance decision and which would have affected his decision had he anticipated them".
The statutory requirements for advance decisions are thus fairly stringent. If, however, P has made an advance decision which is (a) valid and (b) applicable to a treatment, "the decision has effect as if he had made it, and had had capacity to make it, at the time when the question arises whether the treatment should be carried out or continued": s.26(1). Under s.26(4), the court has the power to make a declaration as to whether an advance decision (a) exists (b) is valid and (c) is applicable to a treatment. A valid advance decision is, however, binding in respect of the treatment to which it applies.
The ECHR and Human Rights Act
"1. Everyone's right to life shall be protected by law. No one shall be deprived of his life intentionally save in the execution of a sentence of a court following his conviction of a crime for which this penalty is provided by law.
2. Deprivation of life shall not be regarded as inflicted in contravention of this article when it results from the use of force which is no more than absolutely necessary (a) in defence of any person from unlawful violence;
(b) in order to effect a lawful arrest or to prevent the escape of a person lawfully detained; (c) in action lawfully taken for the purpose of quelling a riot or insurrection."
"In a case where a responsible clinical decision is made to withhold treatment, on the grounds that it is not in the patient's best interests, and that clinical decision is made in accordance with a respect able body of medical opinion, the state's positive obligation under article 2 is, in my view, discharged . 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 Bland "
"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."
It follows, therefore, that a decision by the court, applying the principles laid down in Bland and subsequent cases, including the use of the balance sheet approach, that it would be in a patient's best interests to withhold or withdraw life-sustaining treatment does not give rise to any breach of article 2.
"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 NHS Trust A v M (supra), which concerned a patient in a PVS, Butler-Sloss P held further that an insensate patient has no feelings and no comprehension of the treatment and that, in such circumstances, article 3 did not apply. As explained by the expert evidence in the current case, medical understanding of VS has expanded significantly in the intervening ten years since that case was decided, and it may be that Butler-Sloss P's assertion would not now be applied without qualification. In non-VS cases, however, a patient may have some awareness and comprehension of the withholding and withdrawal of treatment. The impact of the withdrawal of treatment, the methods by which it is achieved, and the steps that can be taken to alleviate any suffering and distress are all part of the best interests assessment. Thus a decision by the Court, having carried out an assessment in accordance with established legal principles, that it is in the patient's best interests to withhold or withdraw treatment does not give rise to a breach of article 3.
"1. Everyone has the right to respect for his private and family life, his home and his correspondence.
2. There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic wellbeing of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others"
"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."
However, due respect for the wishes and feelings of the patient, and for the wishes and feelings of other family members, has, of course, been a feature of the best interests assessment process since the decision in Bland. Thus a decision by the Court, having proper regard to the patient's personal autonomy and the expressed wishes and feelings of the patient and her family, that it would be in her best interests to withhold or withdraw treatment does not give rise to a breach of article 8.
Cases in other jurisdictions
The legal issue between the parties
"possible to make a value judgment as to the consequences to a sensate being of in the one case withholding and in the other case administering the treatment in question. In the case of a permanently insensate being, who if continuing to live would never experience the slightest actual discomfort, it is difficult, if not impossible, to make any relevant comparison between continued existence and the absence of it."
Miss Dolan draws attention to W Healthcare NHS Trust v H (supra) in which the Court of Appeal approved the use of the balance sheet analysis by Coleridge J. at first instance in a case where the patient was described as being
" in a pitiful state. Most of her bodily functions have ceased to work because of the invidious effect of her illness, and she requires 24-hour care to enable her to survive. Her swallowing is unsafe; she is doubly incontinent; she is conscious but not much more than that; she can not speak more than the odd word; she is disorientated in time and place; and she now recognises nobody; not even those who are closest to her in her family."
The patient was not, however, in pain or particular discomfort, nor was she definitively close to death. Although not a case in which MCS was diagnosed, there are clear similarities with the present case. Miss Dolan submits that it provides clear authority for applying the balance sheet approach to MCS cases.
(1) The Family's evidence
(2) The Care Home staff
Skills worker H
Care Worker C
Skills Worker R
Care Worker L
Physio Assistant S
Care Worker K
Care worker W
Conclusions about evidence of care home staff
(1) M has some awareness of self (demonstrated, for example, by her tendency to close her eyes tightly when spoken to, by her occasional responses to command, the fact that she relaxes when massaged, and her distress after S's visits).
(2) M has some awareness of her environment (demonstrated by her awareness of discomfort, her responses in the snoozeroom, her responses during outings, and to music).
(3) She has some understanding of language (demonstrated again by her occasional response to command, and to other remarks by carers such as K's comment about how she had "burned my boobies" and Mr. Badwan's question: "are you a New York Girl?"
(4) She has on occasion spoken words herself (for example, "hello", "where am I?" "bloody hell", "morning").
(5) She opens her eyes and sometimes appears to watch people and her surroundings (for example, if people are talking, or in the snoozeroom).
(6) She moves her arms on occasions in a way that indicates her mood and needs.
(7) She makes noises - different sounds in different circumstances. The inference is that she uses her capacity to make noises as a means of communicating her needs.
(8) She responds differently to different people (for example S, Physio L and Mr. Badwan).
(9) She has responded on a number of occasions to music both upbeat music and to love songs and ballads.
(10) When taken out in the Spring of 2011, she responded in a number of ways as described by Nurse O and Skills Worker H. There is some evidence that her overall responsiveness has increased since the outings took place.
(3) The evidence of Helen Gill-Thwaites: the SMART assessments
"quite apparent that M was not in a vegetative state by demonstrating the ability to respond purposefully to a simple command. She displayed marked hyper-sensitivity, and squeezed her eyes tightly shut most of the time. When her eyelids were held open, the pupils were both equal and reactive to light, the gaze was not divergent, nor was there any mystagmus (insert definition) noted. In fact, there was evidence of eye tracking and fair fixation of gaze" (see report of Dr. T, physician at the profound brain injury unit at the hospital).
However, despite showing what are described as "islets of ability" to respond to basic commands, and hence selected awareness of certain aspects of her external environment, M was unable during the admission to demonstrate a consistency of high level responses that could be incorporated into function. As a result, the hospital concluded that no further therapeutic intervention was advisable or appropriate at that stage. In describing the results from the 2007/8 hospital admission, Miss Gill-Thwaites observed in evidence that the staff had tried many avenues but were unable to move M on to being able to establish a consistent yes/no response. Although M was observed to follow commands, as had been seen during the SMART assessment, the hospital staff were unable to help her move on to the next stage, which would be linking that capacity to a yes/no response so that she would have been able to begin the process of communication.
(4) The medical expert evidence
i.e. that she can experience pleasure at other times". Mr Badwan further considered that on at least two of the four outings, M's experience was positive and possibly on a third outing. In all circumstances, he believes that it is possible that M would respond to stimuli that would enhance the quality of her life. He believes that M is able to appreciate and interact with her environment, for example her vocalisation when requiring attention to her hygiene, which could be interpreted as a basic level of communicating need.
"M has sustained profound brain damage as a result of brain stem encephalitis in 2003. She is in a minimally conscious state, but at the lowest level, effectively on the border of a vegetative state. Although she has certain responses that indicate a very limited level of awareness of her environment, none of these can be harnessed to allow meaningful interaction, communication or the ability to make choices at any level. I am unable to identify any aspect of her life that gives her positive pleasure or satisfaction. On the contrary she has marked hypersensitivity and it is evident that she experiences a significant level of discomfort and at times pain. Her condition has not changed significantly in the last five years and there is no realistic possibility of recovery. She lacks mental capacity to make decisions regarding her care and treatment, and so any such decisions must be made on the basis of her best interests. Her family is united in their view that she would not want to be alive in her current condition. In my opinion it would be appropriate to withdraw artificial nutrition and hydration and allow her to die in dignity. If this is not done, she may live for another ten to twelve years with considerable burden and distress to herself and to her family."
"The considerable distress of her family at seeing her in this state of discomfort will also be prolonged. In addition, whilst it should not weigh substantially in the argument of in comparison with M's best interest, there are considerable costs to the State of maintaining her in the best possible condition minimise to distress and discomfort. Given that resources are limited, this inevitably means that expenditure in this quarter (which could amount to £1m or more over the remainder of her life) results in deprivation of healthcare funds available for other patients, in whom they could potentially make a real and substantial to quality of life."
"I therefore formally resile from the broader assessment of impacts contained in my earlier report specifically, neither the benefits to the carers nor the burdens to the family and to the State are relevant to the case currently before the court".
BEST INTERESTS ANALYSIS
Preservation of life
M's wishes and feelings
"All the factors in the best interests checklist should be considered, and in particular, the decision-maker should consider any statements that the person has previously made about their wishes and feelings about life-sustaining treatment."
I have that passage firmly in mind, along with para 5.38:
"In setting out the requirements for working out a person's 'best interests', section 4 of the Act puts the person who lacks capacity at the centre of the decision to be made. Even if they cannot make the decision, their wishes and feelings, beliefs and values should be taken fully into account whether expressed in the past or now."
Of course, the Code goes on to add:
"But their wishes and feelings, beliefs and values will not necessarily be the deciding factor in working out their best interests. Any such assessment must consider past and current wishes and feelings, beliefs and values alongside all other factors, but the final decision must be based entirely on what is in the person's best interests."
Nevertheless, the Code clearly envisages that wishes and feelings will be a very important part of the best interests analysis, as confirmed by para 5.41:
"The person may have held strong views in the past which could have a bearing on the decision now to be made. All reasonable efforts must be made to find out whether the person has expressed views in the past that will shape the decision to be made. This could have been through verbal communication, writing, behaviour or habits, or recorded in any other way (for example, home videos or audiotapes)."
Enjoyment of life
Prospects of recovery
Wishes and feelings of family members and carers
The balance sheet
(1) Although M's life will be cut short by up to ten years, she will be freed from the pain and discomfort from which she is currently suffering, and the prospect of increased pain from her chronic conditions.
(2) She will not have to endure any further treatment which could bring significant and unpleasant side effects, nor any other intrusive tests or assessments.
(3) She will be spared years of experiencing further distress such as she demonstrates after seeing S, or hearing certain pieces of music or at other times.
(4) She will be freed from what are described as the indignities of her current circumstances.
(5) Being allowed to die would accord with a number of comments she made prior to her illness as to her wishes and feelings, in particular at the time of the admission of her grandmother, and later her father to nursing homes, and at the time of the Tony Bland case. She has not, however, made any advance decision, nor addressed the specific question whether she would want ANH withdrawn she was in MCS.
(6) By authorising the withdrawal of ANH and thereby allowing M to "die with dignity", the court would be acting in accordance with what family members firmly believe M would have wanted.
(7) Her sister B and her partner S wish ANH to be withdrawn to allow her to die. Their wishes and feelings are based not only on what they believe she would have wanted but also what they generally believe to be in her best interests.
(8) She would be spared further years of life in MCS from which there is no likelihood that she will emerge.
(9) Although she will experience discomfort and possibly pain and distress during the process of withdrawal of ANH, those experiences will be limited in time and can be ameliorated by medication and experienced end of life care.
(1) M will be kept alive for ten years. The preservation of life is a fundamental principle.
(2) She will be spared the effect of withdrawal of ANH. Even with medication and high quality care, there is a significant risk that the process of dying by starvation and dehydration will cause her pain and distress.
(3) She will continue to experience life as a sensate being with a degree of awareness of herself and her environment.
(4) She will continue to gain pleasure from the things which, as described by her carers, give her pleasure at present company, listening to conversation, music and the sensory experience of the snoozeroom.
(5) With the introduction of a planned programme of stimulating experience, it is likely that her enjoyment of life can be extended.
(6) If her room is made more comfortable and homely, her immediate surroundings will become more congenial and add to her pleasure in life.
(7) As she is clinically stable, she will continue to experience life at this level for a number of years.
OBSERVATIONS FOR FUTURE CASES
"Failure to detect behavioural signs of consciousness may lead to premature termination of treatment and missed clinical opportunities . Conversely, misinterpreting non-purposeful or reflexive behaviour as conscious behaviour may lead to falsely optimistic prognoses . In the most severe circumstances, misdiagnosis can cause inappropriate family and legal decisions regarding withdrawal of life-sustaining treatment."