England and Wales High Court (Family Division) Decisions

IN THE HIGH COURT OF JUSTICE
FAMILY DIVISION

		Royal Courts of Justice
		15th May 2015

MR. JUSTICE NEWTON:

1. This case has come into my list on short notice. This is an extempore judgment in proceedings concerning F, who was born in 1948 and is therefore sixty-seven. She has been an inpatient since 2007. The court has had the considerable benefit of Counsel, Mr. Andrew Bagchi QC for the Authority, the applicants, and Sir Robert Francis QC on behalf of the patient, F, through the Official Solicitor.
2. This application was issued on 25^th February for a declaration under s.15 of the Mental Capacity Act: Firstly, that F lacks capacity; secondly, to make decisions about her clinically assisted nutrition and hydration; and, thirdly, the central issue, that it is not in F's best interests for clinically assisted nutrition and hydration to be continued, that it is lawful and in her best interests for clinically assisted nutrition and hydration to be withdrawn.
3. The court has had the benefit of considerable expertise which has been of great assistance. I am in no doubt where her best interests lie and I grant the applications as sought. F has been comprehensively assessed and over a very prolonged period. I find that she has been in a permanent vegetative state for many years; at least five and in all probability eight. In those circumstances it seems to me the current options for her treatment are no longer viable, and the balance if there is one all falls one way. Therefore the declarations which are sought are in F's best interests – that is to withdraw clinically assisted nutrition and hydration – I endorse the views of the clinical team, the Official Solicitor and the family.
4. Whilst I expressed some anxiety that the guidance has not been followed in this Court in relation to the family generally, nonetheless it seems to me that their position is clear and unequivocal. The evidence contained within the papers is well summarised by Ms. T, F's daughter: she asserts that she did not think that her mother would have wanted to be kept alive in a state such as this. She recollected that her mother had a neighbour with Multiple Sclerosis who was in a wheelchair; she recalled her mother saying that she would not want to live in that fashion. Nothing was put in writing by her mother that would assist in the determination of her current circumstances. She, and indeed all the family, support the application. As I say it is not entirely clear of the reason, but the guidance in relation to the consultation and continuing consultation with the family has not in fact been well complied with here. I am not asked specifically to rule on it and, I do not do so, since it has not become a major hurdle.

The Background

5. F was born in 1948. She has lived the whole of her live in the valleys in South Wales. It is evident that many years ago, at least from 1993 onwards, she had significant liver failure caused by chronic abuse of alcohol. She retired through ill-health in 1997. She had been admitted to hospital on a number of occasions in 2000, 2001 and 2006. Her health came to a crisis on 11^th January 2007 when F was found slumped across her bed apparently with concussive symptoms. The records at the time and the Glasgow Coma Scores that were taken demonstrate, together with the CT scan, extensive intracerebral haemorrhaging involving the right frontal lobe. It is described in the papers as acute and bilateral subdural haematoma. Over the next two days, whilst in hospital, there was a reduction in her level of consciousness. On 28^th February 2007 F was transferred to a different hospital where she has remained ever since. In general terms, she has been assessed over a long period (8 years) as being in a vegetative state with no perception of her surroundings. She is not communicative, although she has and does make moaning sounds and can blink her eyes (but these are considered to be entirely reflexive movements). In 2010 it was recorded by a nurse that F was in a persistent vegetative state, having no communication or interaction with family or care staff.
6. As long ago as 2013 a best interests meeting concluded unanimously that the invasive nature of any procedures - that is to say in relation to the advantages and disadvantages with associated surgery - were not in her best interests. The current application was triggered, as I understand it, by an anxiety about the Percutaneous endoscopic gastrostomy tube. That in fact has been dealt with on a temporary basis and forms no part of this judgment. What is evident from the evidence produced by the Authority is that it is the unanimous view of the treating clinicians F has been in a vegetative state now for eight years, and to undertake any further surgical processes would be invasive and from which she would not derive any benefit. In addition, of course, they seek other declarations which I shall make at the end of this judgment.

The Legal Framework

7. I have been referred to and follow the decisions of Baker J in Gloucester CCG v AB & Others [2014] EWCOP 49 and WM [2011] EWHC 2443 Fam, which helpfully summarises the established principles:

Capacity is not in issue between the parties. The unanimous clinical and expert opinion is that due to her severe brain injury F lacks capacity within the meanings of sections 2 and 3 of the MCA to make decisions regarding her medical treatment and litigation. Section 2(1) provides:

"For the purposes of this Act a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or disturbance in the functioning of, the mind or brain."

8. Section 3(1) of the MCA provides:

"(1) For the purposes of section 2 a person is unable to make a decision for himself if he is unable: (a) to understand the information relevant to the decision; (b) to retain that information; (c) to use or weigh that information as part of the process of making the decision; or (d) to communicate his decision (by talking, using sign language or any other means)."

9. Section 4(3) of the MCA provides that when making any decision for those lacking capacity it must be considered whether it is likely that the person will at some time have capacity in relation to the matter in question. The uncontested expert and clinical evidence is that it is likely that F will never regain capacity.

Best Interests

10. Section I (5) of the Mental Capacity Act 2005 provides that:

(1) An act done or a decision made under the Mental Capacity Act 2005 for or on behalf of a person who lacks capacity must be done or made in his best interests.

(2) In determining what is in the best interests of an incapacitated adult, the court must apply the relevant provisions of section 4 of the Act in particular subsections (1) to (7).

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 capacity in relation to the matter 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 to 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 for the person by the court,

as to what would be in the person's best interests and, in particular, as to the matters mentioned in subsection (6).

11. Where a person is unable to consent to medical treatment, it is lawful to provide the patient with treatment if it is necessary and in his best interests. The focus is not on whether it is in the patient's best interests to withhold treatment, but rather on whether it is in his best interests to give or continue the treatment (the 1993 Airedale case and the judgment of Baroness Hale of Richmond):

(i) In making a decision concerning life sustaining treatment, the court must have regard to the relevant Articles of the European Convention for the Protection of Human Rights and Fundamental Freedoms and in particular Articles 2 and 8.

(ii) Article 2 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 (President Butler-Sloss, NHS Trust v. A and M [2001]).

(iii) Article 8 imposes obligations in relation to a patient's personal autonomy and quality of life. 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. The conflict is in an area of growing medical sophistication giving rise to longer life expectancies, is that many are concerned that they should not be forced to linger on in old age or in states of advanced physical or mental decrepitude which conflicts with strongly held ideas of self and personal identity, and the strong overriding principle of the sanctity of life.

(iv) When assessing best interests it would normally be appropriate to adopt the balance sheet approach, as recommended also in Re A [2000].

(v) In some cases of vegetative state, the balance sheet approach is not normally appropriate because all the factors that are relevant normally fall on one side of the scale.

(vi) The fundamental principle derived from the case of the Airedale Trust v. Bland [1993] is identified by Lord Goff. Here the condition of the patient, who was totally unconscious and in whose condition there is no prospect of any improvement, is such that life prolonging treatment is properly to be regarded as being in medical terms useless. For 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, that is where it is futile because the patient is unconscious and there is no prospect of any improvement of this condition. It is reasonable to take account of the invasiveness of treatment and the indignity to which, as the present case shows, a person can be subjected if their life is prolonged by artificial means.

12. I also apply the decision of the Supreme Court in Aintree University Hospital Trust v James [2013] UKSC 67. Each case of course turns on its own facts and I have had brought to my attention for example the case of Lincolnshire NHS Trust v N [2014] EWCOP 16, of 21 July 2014, a decision of Pauffley J. I draw heavily on the decision of the Supreme Court in Aintree University Hospitals NHS Foundation Trust v James and others [2013] UK SC 67. In the lead opinion given by Baroness Hale of Richmond (having reviewed section 4 MCA) then stated as follows (at paragraph 24):

"24. This approach follows very closely the recommendations of the Law Commission in their Report on Mental Incapacity (1995, Law Com No 231) on which the 2005 Act is based. It had been suggested in Re F that it might be enough if the doctor had acted in accordance with an accepted body of medical opinion (the Bolam test for medical negligence). However, as the Court of Appeal later recognised in Re S (Adult Patient: Sterilisation) [2001] Fam 15, there can only logically be one best option. The advantage of a best interests test was that it focused upon the patient as an individual, rather than the conduct of the doctor, and took all the circumstances, both medical and non-medical, into account (paras 3.26, 3.27). But the best interests test should also contain "a strong element of 'substituted judgment'" (para 3.25), taking into account both the past and present wishes and feelings of patient as an individual, and also the factors which he would consider if able to do so (para 3.28). This might include "altruistic sentiments and concern for others" (para 3.31). The Act has helpfully added a reference to the beliefs and values which would be likely to influence his decision if he had capacity. Both provide for consultation with carers and others interested in the patient's welfare as to what would be in his best interests and in particular what his own views would have been. This is, as the Explanatory Notes to the Bill made clear, still a "best interests" rather than a "substituted judgment" test, but one which accepts that the preferences of the person concerned are an important component in deciding where his best interests lie. To take a simple example, it cannot be in the best interests to give the patient food which he does not like when other equally nutritious food is available.

25. Section 4(5) and (10) was an addition while the Bill was passing through Parliament: in considering whether treatment which is necessary to sustain life is in the patient's best interests, the decision-maker must not be motivated by a desire to bring about the patient's death. Like much else in the Act, this reflects the existing law.

26. Beyond this emphasis on the need to see the patient as an individual, with his own values, likes and dislikes, and to consider his best interests in a holistic way, the Act gives no further guidance. But section 42 requires the Lord Chancellor to prepare a code or codes of practice for those making decisions under the Act. Any person acting in a professional capacity or for remuneration is obliged to have regard to the code (section 42(4)) and a court must take account of any provision in or failure to comply with the code which is relevant to a question arising in any civil or criminal proceedings (section 42(5)).

27. The Mental Capacity Act Code of Practice was published in 2007. Lord Pannick QC, on behalf of the trust, accepts that if there is any conflict between what it says and what is said in the guidance given by the General Medical Council under section 35 of the Medical Act 1983 (Treatment and care towards the end of life: good practice in decision-making, 2010) or by the British Medical Association (Withholding and Withdrawing Life-prolonging Medical Treatment: Guidance for decision-making, 3rd edition 2007), then the Mental Capacity Act Code must prevail.

28. The Mental Capacity Act Code deals with decisions about life-sustaining treatment in this way:

"5.31 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.

5.32 As with all decisions, before deciding to withdraw or withhold life-sustaining treatment, the decision-maker must consider the range of treatment options available to work out what would be in the person's best interests. All the factors in the best interest's 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.

5.33 Importantly, section 4(5) cannot be interpreted to mean that doctors are under an obligation to provide, or to continue to provide, life-sustaining treatment where that treatment is not in the best interests of the person, even where the person's death is foreseen. 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." (Emphasis supplied.)

29. It is important to read these paragraphs as a whole. As paragraph:

5.33 makes clear, doctors have to decide whether the life-sustaining treatment is in the best interests of the patient. Section 4(5) does not mean that they have to provide treatment which is not in the patient's best interests. Paragraph 5.31 gives useful guidance, derived from previous case law, as to when life-sustaining treatment may not be in the patient's best interests. Both the judge and the Court of Appeal accepted them as an accurate statement of the law and so would I. However, they differed as to the meaning of the words in italics. The Code is not a statute and should not be construed as one but it is necessary for us to consider which of them was closer to the correct approach.

30. In concluding that he was not persuaded that treatment would be futile or overly burdensome or that there was no prospect of recovery, Peter Jackson J said:


"(a) In Mr James' case, the treatments in question cannot be said to be futile, based on the evidence of their effect so far.

(b) Nor can they be said to be futile in the sense that they could only return Mr James to a quality of life which is not worth living.

(c) Although the burdens of treatment are very great indeed, they have to be weighed against the benefits of a continued existence.

(d) Nor can it be said that there is no prospect of recovery: recovery does not mean a return to full health, but the resumption of a quality of life that Mr James would regard as worthwhile. The references, noted above, to a cure or a return to the former pleasures of life set the standard unduly high".

…

35. The authorities are all agreed that the starting point is a strong presumption that it is in a person's best interests to stay alive. As Sir Thomas Bingham MR said in the Court of Appeal in Bland, at p 808, "A profound respect for the sanctity of human life is embedded in our law and our moral philosophy". Nevertheless, they are also all agreed that this is not an absolute. There are cases where it will not be in a patient's best interests to receive life-sustaining treatment.

36. The courts have been most reluctant to lay down general principles which might guide the decision. Every patient, and every case, is different and must be decided on its own facts. As Hedley J wisely put it at first instance in Portsmouth Hospitals NHS Trust v Wyatt [2005] 1 FLR 21, "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" (para 23). There are cases, such as Bland, where there is no balancing exercise to be conducted. There are cases, where death is in any event imminent, where the factors weighing in the balance will be different from those where life may continue for some time.

37. Nevertheless, there has been some support for a "touchstone of intolerability" in those cases where a balancing exercise is to be carried out. In Re B (A Minor) (Wardship: Medical Treatment) [1981] 1 WLR 1421, authorising an operation which was necessary to save the life of a baby with Down's syndrome, Templeman LJ said that the question was whether "the life of this child is demonstrably going to be so awful that in effect the child must be condemned to die", and Dunn LJ said that there was "no evidence that this child's short life is likely to be an intolerable one". Taylor LJ, in Re J (Wardship: Medical Treatment) [1991] Fam 33, also adopted a test of whether life would be intolerable to the child. However, Lord Donaldson and Balcombe LJ did not see "demonstrably so awful" or "intolerable" as laying down a quasi-statutory test which would apply in all circumstances. And in Portsmouth Hospitals NHS Trust v Wyatt [2005] EWCA Civ 1181, [2005] 1 WLR 3995, the Court of Appeal considered that observations on "intolerability" in W Healthcare NHS Trust v H [2005] 1 WLR 834 were obiter, given that the judge had correctly "decided the case by a careful balance of all the factors in the welfare equation" (para 84).

38. In Re J, Lord Donaldson stated that account had to be taken of the pain and suffering and quality of life which the child would experience if life were prolonged and also of the pain and suffering involved in the proposed treatment. Here we can see a possible genesis for the references in the Code of Practice to the "prospect of recovery" and the "overly burdensome" nature of the treatment. Similarly in Bland, Lord Goff referred to the class of case where "having regard to all the circumstances (including the intrusive nature of the treatment, the hazards involved in it, and the very poor quality of life which may be prolonged) it may be judged not in the best interests of the patient to initiate or continue life-prolonging treatment" (p 868). But he expressed no view as to the precise principles applicable to such cases, because Anthony Bland's case was in a different category, where the treatment was of no benefit to him at all. Here there was no weighing operation to be performed because treatment was useless: "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 (p 869)". Here we can see a possible genesis of the word "futile" in the Code of Practice and in that case it referred to treatment which was of no benefit at all to the patient.

39. The most that can be said, therefore, is that in considering the best interests of this particular patient at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude to the treatment is or would be likely to be; and they must consult others who are looking after him or interested in his welfare, in particular for their view of what his attitude would be.

40. In my view, therefore, Peter Jackson J was correct in his approach.

Given the genesis of the concepts used in the Code of Practice, he was correct to consider whether the proposed treatments would be futile in the sense of being ineffective or being of no benefit to the patient. Two of the treatments had been tried before and had worked. He was also correct to say that "recovery does not mean a return to full health, but the resumption of a quality of life which Mr James would regard as worthwhile". He clearly did consider that the treatments in question were very burdensome. But he considered that those burdens had to be weighed against the benefits of a continued existence. He was also correct to see the assessment of the medical effects of the treatment as only part of the equation. Regard had to be had to the patient's welfare in the widest sense, and great weight to be given to Mr James' family life which was "of the closest and most meaningful kind".

41. Perhaps above all, he was right to be cautious about making declarations in circumstances which were not fully predictable or fluctuating. The judge was invited to address the question whether it would be lawful to withhold any or all of these treatments. But if he had been asked the right question, whether it would be in the patient's best interests to give any or all of them should the occasion arise, his answer would clearly have been to the same effect. He would have said, as he was entitled to say that, on the evidence before him, it was too soon to say that it was not. That conclusion is quite consistent with his statement that "for what it is worth" he thought it unlikely that further CPR would be in the patient's best interests.

42. That is not to say that I would have reached the same conclusion as the judge in relation to each of these treatments. There was no question of withdrawing clinically supported nutrition and hydration or ventilation or other supported breathing or, by the time of the hearing, intravenous antibiotics. The treatments in question were all highly invasive. I might have drawn a distinction between them. Invasive support for circulatory problems had been used successfully in the past and the patient had rallied. Renal replacement therapy had not so far been needed and so it might be difficult to predict both its effectiveness and its impact upon the patient's overall wellbeing. Cardiopulmonary resuscitation, on the other hand, although it had been used successfully in the past, is designed to restart a heart which has stopped beating or lungs which have stopped breathing, in effect to bring the patient back to life. I can understand why the judge thought it premature to say that it should not be attempted. But given the particular nature of this treatment, given its prospects of success, and particularly given the risk that, if revived, the patient would be even more seriously disabled than before, I would probably have declared that it would not be in the patient's best interests to attempt it. But if the judge has correctly directed himself as to the law, as in my view this judge did, an appellate court can only interfere with his decision if satisfied that it was wrong: Re B (A Child) (Care Proceedings: Appeal) [2013] UKSC 33, [2013] 1 WLR 1911. In a case as sensitive and difficult as this, whichever way the judge's decision goes, an appellate court should be very slow to conclude that he was wrong.

43. It follows that I respectfully disagree with the statements of principle in the Court of Appeal where they differ from those of the judge. Thus it is setting the goal too high to say that treatment is futile unless it has "a real prospect of curing or at least palliating the life-threatening disease or illness from which the patient is suffering". This phrase may be a partial quotation from Grubb, Laing and McHale, Principles of Medical Law (3rd edition 2010), para 10.214, where the authors suggest that "Treatment can properly be categorised as futile if it cannot cure or palliate the disease or illness from which the patient is suffering and thus serves no therapeutic purpose of any kind". Earlier, they had used the words "useless" or "pointless". Given its genesis in Bland, this seems the more likely meaning to be attributed to the word as used in the Code of Practice. A treatment may bring some benefit to the patient even though it has no effect upon the underlying disease or disability. The Intensive Care Society and the Faculty of Intensive Medicine, who have helpfully intervened in this appeal, supported the test proposed by Sir Alan Ward. But this was because they believed that it reflected clinical practice in which "'futility' would normally be understood as meaning that the patient cannot benefit from a medical intervention because he or she will not survive with treatment". That is much closer to the definition adopted by the judge than by Sir Alan.

44. I also respectfully disagree with the statement that "no prospect of recovery" means "no prospect of recovering such a state of good health as will avert the looming prospect of death if the life-sustaining treatment is given". At least on the evidence before the judge, this was not, as Sir Alan Ward put it, a situation in which the patient was "actively dying". It was accepted in Burke (as it had been earlier) that where the patient is close to death, the object may properly be to make his dying as comfortable and as dignified as possible, rather than to take invasive steps to prolong his life for a short while (see paras 62-63). But where a patient is suffering from an incurable illness, disease or disability, it is not very helpful to talk of recovering a state of "good health". The patient's life may still be very well worth living. Resuming a quality of life which the patient would regard as worthwhile is more readily applicable, particularly in the case of a patient with permanent disabilities. As was emphasised in Re J (1991), it is not for others to say that a life which the patient would regard as worthwhile is not worth living.

45. Finally, insofar as Sir Alan Ward and Arden LJ were suggesting that the test of the patient's wishes and feelings was an objective one, what the reasonable patient would think, again I respectfully disagree. The purpose of the best interests test is to consider matters from the patient's point of view. That is not to say that his wishes must prevail, any more than those of a fully capable patient must prevail. We cannot always have what we want. Nor will it always be possible to ascertain what an incapable patient's wishes are. Even if it is possible to determine what his views were in the past, they might well have changed in the light of the stresses and strains of his current predicament. In this case, the highest it could be put was, as counsel had agreed, that "It was likely that Mr James would want treatment up to the point where it became hopeless". But insofar as it is possible to ascertain the patient's wishes and feelings, his beliefs and values or the things which were important to him, it is those which should be taken into account because they are a component in making the choice which is right for him as an individual human being."

13. In Bland, Lord Goff points out that the question is not whether it is in the best interests of the patient that he should die. The question is whether it is in the best interests of the patient that his life should be prolonged by the continuance of this form of treatment. Other judgments have been to the same effect. Lord Brown-Wilkinson said:

"The critical decision to be made is whether it is in the best interests to continue the invasive medical care involved in artificial feeding. That question is not the same as is it in the patient's best interests that he should die? The latter question assumes that it is lawful to perpetuate life, but such perpetuation of life can only be achieved if it is lawful to continue to invade the bodily integrity of the patient by invasive medical care. Hence the focus is on whether it is in the patient's best interests to give the treatment rather than whether it is in the patient's best interests to withhold or withdraw it. If the treatment is not in his best interests the court will not be able to give its consent on his behalf and it will follow that it will not be lawful to withhold or withdraw it. Indeed it will follow that it will not be lawful to give it. It also follows that, provided of course that they have acted reasonably and without negligence, the clinical team will not be in breach of any duty towards the patient if they withhold or withdraw it."

I add to that the Royal College of Physicians, National Clinical Guidelines of 2013. They provide not just definitions, but also a code of implementation. The relevant definitions (for definitions vegetative state and minimally conscious state) are:

Vegetative state is defined as a state of wakefulness without awareness in which there is preserved capacity for spontaneous or stimulus induced arousal evidenced by sleep/wake cycles and a range of reflexive spontaneous behaviours. Vegetative state is said to be characterised by complete absence of behavioural evidence or self or environmental awareness.

Minimally conscious state is defined as a state of severely altered conscious in which minimal but clearly discernible behavioural evidence of self or environmental awareness is demonstrated. Minimally conscious state is said to be characterised by inconsistent but reproducible responses above the level of spontaneous or reflexive behaviour, which indicates some degree of interaction with their surroundings.

The important distinction of diagnosis (between minimally conscious state and vegetative states) so far as the court is concerned self evidently dictates a different path, with different considerations and vastly different outcomes. In relation to a permanent vegetative state it may mean that the life sustaining treatment is futile, whereas in a minimally conscious state the court takes an holisitic balance sheet approach. That distinction is evidently and well set out by the judgment in WM, which pre-dates the guidelines but in which a diagnosis was made which was subsequently shown to be incorrect. The Court must examine therefore diagnosis with some considerable degree of care. In essence, without setting out the entirety of the guidance which is substantial, it seems to me that the guidelines which are set out in them ordinarily should always be followed by applicants in circumstances such as this. Indeed, the guidance itself sets out that it is an area where the tools which are set out extensively within them are ones which should be precursors to applications being made. There are good examples, but I preface it all by the fact that it is evidently of the utmost - indeed the most vital - importance that every step should always be taken to diagnose a patient's true condition before the application is made. If that does not occur what has happened in this and indeed in other cases in my experience is that there is inevitably delay, uncertainty and anxiety, as well as increased cost.

14. There are a number of points which seem to me to be important and which apply to this case. Firstly there are the assessments which are available to the court, provided by the applicants, but from practitioners, who may not necessarily have the necessary training and expertise which I would have expected. Section 2 of the guidance makes it clear that "assessors for the diagnosis of which the court is concerned should meet the minimum requirements set out, both as to experience and training". It may be here that that is the case, but I am not confident that it is so.
15. I have however had the advantage of the evidence provided by Professor Wade. He, of course, was part of the working party that gave rise to the guidance in the first place. He obviously does have the experience and training that one would expect in such a sensitive case. Unhappily, the formal assessments detailed in the guidance have not been carried out either. Those assessments are there for good reason. Authorities must understand that in future without that evidence, it is likely that the application may be subject to summary rejection. The guidance makes it clear that structured assessment tools should ordinarily always be used for assisting the court, and those who apply to it. It refers to three main assessment processes: The first is the Wessex Head Injury Matrix ("WHIM"); second, is the Sensory Modality Assessment and Rehabilitation Technique ("SMART"); and, third, is the Coma Recovery Scale as revised ("CRSR"). The guidance recommends that the use of one or more of those three assessments should be used as instruments of formal structured assessment over time in such applications. Though it is not necessarily prescriptive it does recommend, for example, that if there were to be a WHIM assessment that should be carried out on a specific number of occasions (in fact ten) and over an extended period over a number of weeks. In relation to the SMART assessment, it is a detailed assessment. It is developed to detect awareness, functional and communication capacity. The SMART assessments are ones which need to be carried out by suitably qualified persons. They are very sophisticated tools of invaluable insight and assistance. The court expects a high level of certainty with respect to diagnosis, because as earlier cases have shown it is easy to reach a diagnosis which in fact is subsequently shown to be incorrect (some 40% I am told). The court can only reach a safe conclusion once it has regard to the clinical evaluation and having regard to the WHIM or the CRSR or probably better still a SMART if that is necessary in the particular case. If there is any degree of uncertainty or disagreement on the level of responsiveness then the SMART test, as the court's experience shows, is essential to resolve it.
16. Ideally the guidance suggests that at least two of those assessments should be carried out (the WHIM, the CRSR or the SMART) in support of any application made to the Court of Protection. Additionally, where assessments are to be used in support of an application to the court to withdraw treatment as life sustaining therapy or treatment, a SMART assessment should also be used. Here no SMART assessment has been carried out. Here, fortunately from the experts familiar to the court, it is considered that the equivalent of a CRSR assessment "can be properly deduced and inferred" from the length of time. There were WHIM assessments (although they were in fact not carried out in compliance with the guidance as suggested).
17. The conclusion additionally, is that the guidance states that once it has been decided that "active life sustaining treatment should be discontinued" the specialist rehabilitation team should write a formal medico-legal report for the legal team to support its application which should include a summary of relevant formal assessments made to reach the diagnosis and a record of a formal best interests meeting together with a preliminary balance sheet of benefits and harms. I am not clear that the clinicians and the evidence supporting this case does amount to a "specialist rehabilitation team". I am not satisfied either that the best interests meetings have been carried out in accordance with the guidance.
18. In relation to the actual evidence in this case, it overwhelmingly supports the conclusions reached by the applicants and that the orders sought are justified and necessary. There is no issue as to capacity, the court is entitled to make the declarations. I find that F has no capacity in relation to these issues.
19. In relation to the evidence in support of the application, of course, I bear in mind both Dr. Whitehead's and Dr. Aslan's assessments. It is not necessary for me to go through specifically the evidence contained in their reports. Dr. Aslan concludes that F has been in a vegetative state for eight years with no prospect of recovery. Professor Wade's first report from September 2014 says:

"(a) The patient demonstrates no visual response and very limited responses to auditory and somatic stimuli in very limited measure response.

(b) The patient has extensive brain damage caused by chronic excessive alcohol consumption and subdural haemorrhaging and a secondary haemorrhage or cerebral vasospasm causing cerebral infarction.

(c) Although there is evidence to suggest that the patient has an intact primary visual pathway and auditory pathway and some sensory and primary motor pathway, she has no behaviours indicating any awareness of her own state or environment.

(d) She is in a vegetative state.

(e) This was caused by the brain damage sustained between 11^th and 16^th January 2007.

(f) There is no need to undertake further specialised assessment beyond the WHIM assessment already undertaken.

(g) There is no prospect whatsoever of recovery or improvement. She is in a permanent vegetative state.

(h) Her life expectancy is probably around five years.

(i) I support the clinical decision that it is not in the best interests of the patient to have continuing artificial nutrition and hydration as a medical treatment and that the existing tube should be removed.

(j) Upon removal of artificial nutrition and hydration, it is likely that the patient will die within ten to fourteen days though it may be longer.

(k) During that process the patient should have available to her all and any palliative care required with analgesia if necessary to manage any apparent distress."

A subsequent letter which was received just before the matter came first before the court at the end of March from Professor Wade, he added:

"The patient has been observed routinely and informally by staff and formally using a recognised structured assessment procedure [the WHIM procedure] over eight years and on a number of occasions. At no point has any person seen any behaviour even slightly suggestive of a low level of awareness. The chance of her having awareness in this situation is vanishingly small. Undertaking further assessments of her level of awareness would delay matters and no realistic prospect of identifying awareness."

20. Subsequently, after the hearing before Mostyn J on 27^th March 2015, as a result of the justified and understandable anxiety of the Official Solicitor, he responded as follows:

(1) That there is no likelihood that the patient has any reversible or treatable for a specific cause for her brain damage that would materially alter her level of responsiveness and further investigation is unnecessary.

(2) Although the guidelines had indicated the need for a SMART assessment it was justified in this case stating there must always be an element of clinical judgement, pragmatism and interpreting and in using the guidelines to the specific case in hand. He additionally made the point that the guidance had focused very much on people in early stages of recovery and, without in any way wishing to be glib, effectively the guidance is just that guidance.

(3) In view of the fact that the patient's condition had been stable for many years there was no need to carry out further observations using the WHIM assessment for a longer period.

(4) The assessment he undertook was essentially similar to the CRSR.

(5) In a hospital setting with trained nurses since 2007 the total extended observation made over that time exceeds by many times the extent of observation recommended in the guidelines. Consequently, he concluded that it was improbable that she had any awareness at any point.

(6) As to the suggestion that a SMART assessment should be undertaken now, this assessment has no pre-eminent superiority or position and indeed increasingly uses evidence taken from nursing staff and family as an important part of the assessment. Clinically, there is no justification for the expenditure of considerable resources or time on undertaking this assessment in addition to the existing evidence.

(7) He concluded: "Clinically, there is no doubt about the patient's level of awareness. She is currently completely unaware of herself and her environment and there is no doubt that she has sufficient brain damage to account for this situation, although the precise cause of the deterioration after admission in hospital is not known absolutely. There is no doubt that her current clinical state is not due to any reversible factors, but in my opinion there is little doubt that she would not wish to be in this. Consequently, in my opinion, it is not in her best interests even to continue with hydration and it is certainly not in her best interests to re-establish clinically assisted nutrition and hydration."

21. As a result of the Official Solicitor's concerns, Dr Badwan was also instructed. He has not examined the patient. He notes the unusual entries in 2007 between April and December and the last unusual entry being 31^st January 2010. But, notwithstanding that, concludes that the records are consistent over five years - his conclusions are that F has in fact been uncommunicative and unresponsive since 2007. He concludes that, on the balance of probability, F has been in a vegetative state for at least five years, and very probably eight. He agrees with Professor Wade that further treatment is futile and will not result in any improvement of the patient's level of awareness or clinical status.

Conclusions

22. Notwithstanding the fact that the guidance has not been strictly complied with, I am nonetheless satisfied that the court should make the declarations that are sought. I conclude that the patient is in a permanent vegetative state, has been so for five years and probably eight; that so far as the prognosis is concerned F will neither improve nor will she recover awareness. I am satisfied, indeed sure, that it is right to make the declarations sought. The reality is that any short term measures would be risky and unnecessary. The unanimous views of the treating doctors and clinicians and of the independent experts is one where it is in the best interests of the patient for support to be withdrawn. That view is supported by the family. Here there is no risk of an incomplete or erroneous diagnosis. I am satisfied that (having regard to the definition in Bland), F's life is futile. She has no awareness and simply exists. I therefore unhesitatingly conclude that in all the circumstances it is in her best interests to make the declarations sought.
23. In this case there has been delay and uncertainty not just for the treating teams and caring staff, but importantly for F and the family. The advices of Dr. Badwan, which are always helpful and to the point, are clear and support the other evidence in this case; the court is therefore prepared to make the declarations as sought. The guidelines are set out for good reason. It is not just that it is good practice and a gold standard that should be adhered to, but because the court is in fact being asked to sanction a course of conduct which, if granted, almost always leads to the death of a patient. The law recognises the overriding importance of the sanctity of life. Therefore the guidance must be complied with in relation to all such applications so that the court can deal with the matter swiftly, humanely and justly. This is the third such application that I have encountered in as many weeks where there has been inadequate evidence and analysis not just to comply with the RCP Guidance but to enable the Court to carry out the necessary analysis and balance. In future all applications must do so.
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