England and Wales Court of Protection Decisions

IN THE COURT OF PROTECTION

		Royal Courts of Justice Strand, London, WC2A 2LL
		08/02/2017

Mr Justice Hayden :

1. This matter first came before the Court, pursuant to applications by the Abertawe Bro Morgannwg University Local Health Board, concerning declarations and Best Interest Orders pursuant to the Mental Capacity Act 2005, relating to RY. At a hearing on the 23^rd November 2016 there was agreement between all the parties that RY should undergo a tracheostomy procedure. I made the following orders :

1. That it is in the best interests of the First Respondent:

(i) As soon as it can be arranged, to undergo a tracheostomy under general anaesthetic;

(ii) Thereafter to be transferred to an appropriate medical ward at Morriston Hospital, Swansea for further treatment;

(iii) To undergo treatment of infections as and when clinically indicated to include by way of intravenous antibiotics if appropriate.

(iv) For his nutritional needs to be assessed and met.

(v) To undergo further assessments to include:

a. A Structured Assessment of his level of awareness;

b. Assessment of the burdens of treatment for the First Respondent, in particular the pain and distress caused by repeated suctioning;

c. Assessment of the First Respondent's ability to experience pleasure; and

d. Assessment of the First Respondent's prospects of achieving further recovery and his chances of recovering consciousness to a level that would afford him a quality of life that would accord with his wishes, values and feelings, the same being described by the Second Respondent in her statement of 22 November 2016.

2. I also and with the full agreement of all the parties provided for the following eventualities:

i) Not to be further resuscitated if he should have further cardiac or respiratory arrest subject to review every 3 weeks. This would include no CPR being attempted/undertaken by family members;

ii) Not to be made the subject of further Intensive Care treatment and not to be re-admitted to the Intensive Therapy Unit unless in the view of the ward consultant physician and the consultant intensivist such readmission is clinically indicated subject to regular review in the event of an improvement in condition.

iii) To receive pain relief medication if in the view of the First Respondent's then treating clinicians it is clinically indicated.

BACKGROUND

3. RY is 81 years of age. He suffered a cardiac arrest in June 2016, most probably as a consequence of cardiac rhythm disturbance. It seems likely that he experienced a prolonged delay before CPR commenced. However CPR did eventually result in return of heart function. Several ribs were fractured in consequence of the CPR. When he arrived at the Moriston Hospital, Swansea, RY had a coronary angiogram which indicated no intervention was required by the cardiology team. The CT scan which was undertaken to exclude any pathology that could have caused his collapse revealed an almost total loss of grey white differentiation in brain matter and features consistent with global hypoxic brain injury.
4. Though RY had been sedated since admission this was discontinued on the 17^th June 2016 in order to make an assessment of his neurological status. RY did not achieve consciousness. A second CT scan was performed revealing global ischaemic damage throughout the brain parenchyma involving both the superficial cortical and the deep grey matter (supra tentorially). Dr David Hope, a Consultant in Intensive Care Medicine, considered the prognosis was futile based on the clinical history and the CT findings. He advised RY's adult children AY and CP, that the patient's best interests would be served by withdrawing active organ support; specifically the removing of the ventilator tube. The consequence of this was explained to the family i.e. that RY might die within hours or within a few days.
5. CP was clear throughout these conversations in July 2016 that her father 'would want everything done' in order to preserve his life. She maintained then, as she has done throughout, that he would have taken the view that 'any life is better than no life'. On the 23^rd November 2016 I gave a short extempore judgment reported at [2016] EWHC 3256 (Fam). Whilst I acceded to the parties' consensus I was also concerned that the clinicians had very strong reservations. I questioned the consensus, in order to test it with counsel and recorded in my judgment two important paragraphs from the case papers. The first was the Health Board's Position Statement:

"In terms of best interests and the issue of the tracheostomy, the Applicant contends that this is on a very fine balance. While a tracheostomy would permit RY to leave the ITU for the ward and potentially thereafter a nursing home, the suctioning which will still be required via the tracheostomy will be highly invasive and uncomfortable for RY and will have to be performed regularly (day and night) depending upon his secretion load. The operation itself carries risks, including at least a 1-3% chance of mortality, bleeding, infection and scarring alongside anaesthetic risks. If the Court is willing to sanction the procedure with that in mind, the Applicant is willing to undertake it. The Court may be assisted by hearing brief evidence from Dr Gorst on that point."

6. The second was an extract from the report Dr Gorst, the Consultant in Intensive Care Medicine who had overall charge of RY's care:

"'Sanctity of life and 'any chance of life' are very noble principles which I agree with. However any chance of life does not mean any chance of life no matter what the pain, indignity and burden it entails and no matter what the chances of recovery are. Few people have had the first-hand experience of receiving or delivering the interventions that are necessary to support life during Intensive Care treatment for short periods never mind many months. It is difficult to imagine how anyone, without either previously receiving or delivering critical care interventions, can predict the distressing nature of such interventions and balance them against 'any chance of life'."

7. Mr Badwan, Consultant in Rehabilitation Medicine, had in August 2016, considered it most likely that RY was in a Vegetative State. By November Mr Badwan, had revised his opinion to 'Minimally Conscious State (plus)' it was this revised diagnosis that led, in my judgement, to the professional consensus reflected in my orders above.
8. The Health Board requested a hearing before this Court which was accommodated on the 19^th January 2017. It requires to be recorded that the Health Board filed a Position Statement, dated 18^th January 2017, in which they set out the following position:

Summary

64. The Health Board submits that if there is any reasonable doubt about the diagnosis of persistent vegetative state then a balancing exercise should be conducted.

65. The Health Board accepts that the default or starting position is the strong presumption that a person's best interests are best served by preserving their life.

66. The Health Board accepts that there may be insufficient burdens for that presumption to be displaced. In the absence of the ability to experience pleasure the position can be best described as neutral.

67. The Health Board does not consider that there is any prospect of recovery.

68. The Health Board considers that an important factor is whether RY's current life, where he is unable to experience pleasure with no prospect of recovery, is one that he would find worthwhile.

69. The Health Board is unable to adopt a position on whether RY would find his life worthwhile as it is entirely reliant on the evidence of RY's family who understandably have found it difficult to accept that RY has no prospect of further recovery. The Court is asked to determine this issue having heard further evidence from the 2^nd Respondent, AY and any other member of RY's family that is interested in his welfare.

9. This document, to my mind, bears the inimitable hallmark of the lawyer. I was concerned that the 'neutral stance' at paragraph 69 above was not at all easy, at least on the papers filed, to reconcile with the medical evidence. At the hearing on the 19^th January Mr Chisholm's request, on behalf of the Health Board, was to withdraw the application. I indicated that I was not prepared to accede to that request because the available information was ambivalent and the Court itself was now seized of the responsibility.
10. When the case returned for hearing the Health Board had once again changed its stance. It is important that I state clearly that I make absolutely no criticism of this. The full clinical picture has been difficult to distil and initially, as I have recorded above, the Health Board had considered the insertion of the tracheostomy to be indicated only on 'a very fine balance'. At this hearing the Health Board sought a declaration that withdrawal of the tracheostomy and the termination of deep suctioning was in RY's best interest. Though Mr Chisholm has characterised the case as a 'difficult' one, he has not contended that the evidence is delicately balanced. The real difficulty, as he properly identified, is that much of the key information has come before the Court late in the day and has caused various doctors to revise or moderate their opinions. Again, I make no criticism of anybody involved. It is the situation itself which has been dynamic. The care with which each of the doctors has responded to the evolving picture has been impressive, most notably because they have all engaged in a constructive professional dialectic.
11. In the course of exchanges with counsel, during the course of their closing submissions, it was possible to establish a number of key facts. Thus:

i) Whilst life expectancy can rarely be predicted with a fine degree of accuracy, in circumstances of this kind, all the doctors agree that the preponderant evidence points towards 12 months from the time of RY's accident i.e. 6 months from the date of this hearing. Mr Badwan first settled on that view at a very early stage in this case. He has not seen anything that causes him to review his decision on this point. Dr Mughal readily agreed;

ii) RY's state of consciousness can properly be described as a Minimally Conscious State;

iii) Having been in a coma, a Vegetative State and, now, Minimally Conscious, it is agreed that there has been a trajectory of improvement;

iv) RY has the capacity for pain;

v) It must be assumed that having capacity for pain RY must also have capacity for pleasure;

vi) RY's general physical condition is deteriorating and will continue to do so.

12. One of the central areas of investigation during this hearing has been the extent to which RY has any further potential for improvement in his limited level of consciousness. Dr. Lowman's position is expressed in her report date 17^th January 2017 as follows:

"I do not think he has potential to improve in view of the time elapsed from time of injury, his age, which will significantly limit any neuronal plasticity, and the findings on the CT head and EEG which suggests severe, irrecoverable brain damage. This is consistent with the documented clinical history of out of hospital cardiac arrest, in an older person with a prolonged time without spontaneous circulation, as the brain is extremely vulnerable in those circumstances. Unfortunately irreversible brain damage can occur within a matter of minutes as the brain is entirely dependent on the circulation in order for oxygen and glucose to be provided and has no intrinsic energy stores. In the context of a hypoxic brain injury, if there is no recovery in six months, further improvement becomes extremely unlikely and PDOC is considered permanent. "

13. Mr Badwan was rather more optimistic. It is his views that have changed most significantly. Again, I regard this as a strength rather than a weakness. By the conclusion of his evidence he had departed from the opinion in his report, dated 17^th November 2016, in which he was prepared to contemplate the possibility of RY continuing a trajectory of recovery that might permit him to 'sit outside and watch wildlife' and 'to be able to watch television'. These had been identified as features that RY would be likely to gain pleasure from. Mr Badwan also accepted that the extent of the hypoxic damage to the brain, particularly obvious in the cortical region, makes the possibility of vision highly unlikely. With characteristic optimism Mr Badwan emphasises on this last point that 'one can never be sure!'.
14. In so far as I can identify RY experiencing any pleasure in life at all, it is limited to possible awareness, from time to time of the presence of CP and AY at his bedside holding his hand. In expressing it in this way I do not seek in anyway to minimise the enormity of the pleasure that this simple act is able to give. My hesitation reflects only my anxiety that this, for the reasons that I will set out below, may be a projection on the part of CP and AY. The only evidential basis I can root it in is the assumption that where the capacity for pain exists the logical corollary must be that the potential for pleasure coexists.
15. Whilst I entirely accept that there has been a trajectory of improvement in the realm of awareness, it is wrong to overemphasise the gradient of the trajectory or exaggerate its potential. Ultimately, as the evidence evolved, I found there to be only shades of difference between the views of Dr. Lowman, Mr Badwan or Dr Elliott, who conducted the SMART assessment process. Each displayed an entirely proper preparedness to yield to the views of the others. There is here, the potential for a continued trajectory of improvement which must be recognised to have limited scope. Of course any improvement in this context will have its own significance and always weigh heavily when evaluating RY's best interests.

BEST INTERESTS

16. Dr. Gorst is a Consultant in Intensive Care Medicine at the Moriston Hospital in Swansea. He has been directly involved with RY during his time in ITU. Following RY's release to the general ward, Dr Gorst has continued to consult with the medical team. I have been impressed with his commitment to his patient, his determination to assist this Court and his instinctive respect for the contribution of colleagues from other disciplines. I have found his evidence to be reflective and measured. He has emphasised that any evaluation of 'best interests' for a patient in these circumstances, must involve considering the broad clinical picture and not become overly focused on the single issue of consciousness or awareness. I agree with that approach. Similarly, assessment of the advantages and disadvantages of deep suctioning, in RY's particular circumstances, cannot be considered as an isolated issue but require to be assessed in the context of the patient's overall medical situation and prognosis, the 'holistic approach' as Dr Gorst calls it.
17. Dr Gorst told me that prior to RY's collapse, aged 81 years, he was 'unremarkable medically'. By this he explained that RY was neither particularly fit nor in strikingly poor condition for his age. In his present condition Dr Gorst told me that RY has limited physiological reserve. In ITU a patient has one to one care. On the general ward this is simply not possible. Sadly, but inevitably, RY has declined. His physical condition is now very poor. Dr Gorst told me that in the latter stages of life muscle mass begins to decline. Nobody, he said, truly knows why this is. It is already very visible in RY including in his facial muscles which are described as 'sunken'. This deterioration bears its own significance. As muscle declines and bone becomes less protected there is 'increasing pain and discomfort for a bed bound patient' who needs to be frequently turned. We simply do not know, on the available evidence, whether this will cause RY pain at present, whether he may feel it intermittently or, should consciousness further improve, whether he will experience pain from this source in the future. In my judgement, the more 'optimistic' evaluation of consciousness advanced by Mr Badwan requires an openness to each of these possibilities. I am instinctively uncomfortable in making the assumption that RY's capacity to experience pain is limited to the undoubted pain caused by deep suctioning or his response to Mr Badwan pinching him on the upper limb. This is the pain that we can be sure is experienced by RY.
18. Despite the very high level of care RY has received, he has developed a pressure sore on his heel which presents a risk of infection and Dr. Gorst tells me is further exacerbated by his diabetes. My observations (para 17) above, as to the relevance of RY's capacity for pain, apply here too and in my review of his physical condition generally. Dr Gorst emphasises that both the pain of pressure sores and their potential for infection should not be underestimated. Moreover, he considers that notwithstanding the best endeavours of all concerned it is likely that further pressure sores may develop.
19. Both Dr Gorst and Mr Badwan have separately commented on the 'thin' and 'delicate' nature of RY's skin. Though I did not immediately appreciate the significance of this Dr Gorst explained that it is vulnerable to tears and infection.
20. Finally, there are a raft of other medical features: a compromised immune system; impaired lung function (sometimes requiring oxygen mask); significant limb contractures; more general complications relating to RY's diabetes. In his evidence Dr Mughal, a Consultant Respiratory Physician, told me that there had been visible deterioration in RY's condition in the two weeks prior to the commencement of this hearing.
21. Perhaps the most significant issue for RY is the accumulation of secretions which are a consequence of his incomplete cough function. As the evidence unfolded, as I have set out above, it became clear that RY is experiencing pain on deep suctioning, inserted through the tracheostomy. The real difficulty in evaluating consciousness and therefore pain in situations of this kind is, for me, illustrated by the fact that Mr Jones, an experienced ward manager, with much experience of patients with tracheostomies, had not himself appreciated that RY was experiencing pain in deep suctioning. Mr Chisholm suggests that Mr Badwan's earlier conclusion that RY was in a Vegetative State (and therefore unable to experience pain) had understandably caused Mr Jones to be less alert to the signs of it. Mr Jones, very much to his credit, was prepared to accept this.
22. Dr Mughal was very clear and convincing on this question. Deep suctioning, he told me, was causing RY 'lots of pain' and 'discomfort'. Mr Badwan accepted this evidence without question. He reminded me however, that it was in the nature of the MCS condition, that awareness is intermittent and thus pain would not be experienced on every occasion where deep suctioning was deployed. In addition, Mr Badwan conducted a physical examination in which he exerted pain on RY's upper limb which provoked 'a clear facial reaction of pain', which he described as 'an actual expression of painful experience', 'not a simple grimace'. Whilst this provided helpful information I confess that the impact of it was also to remind me how extremely intrusive assessments of consciousness are and how cautious the Courts should be when sanctioning the repeat tests that are far too frequently requested.
23. Dr Baker, a Consultant in Palliative Medicine, suggested that a synergistic combination of drugs could be prescribed in order to ameliorate the pain caused by the deep suctioning process. He contemplated a range of applications of which intravenous appeared to be his preferred option. It is not necessary for me to determine this, nor therefore further to burden this judgment with the alternatives. However, what is significant is that the administration of opiate medication would serve to suppress consciousness (thus compromising capacity for pleasure by reducing pain) and further to depress respiratory capacity. This caused Dr Baker, from the perspective of his own specialism, to be entirely unsure whether deep suctioning via the tracheostomy can now be said to be in RY's best interest.

THE LEGAL FRAMEWORK

24. The starting point for consideration of 'best interests' is s4 Mental Capacity Act 2005. In this case a number of the s4 provisions require to be highlighted:

(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,

25. The Code of Practice to the Mental Capacity Act also require careful consideration, particularly:

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 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. [my emphasis]

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.

26. I turn therefore to the evidence of the family. In so many cases this is often as significant as the medical evidence, perhaps even more so. The National Clinical Guidelines: Prolong Disorders of Consciousness, 2013, emphasise the role of family and close friends in the assessment of consciousness. They are, as this case illustrates, often present over prolong periods. Additionally, their very familiarity with the patient may stimulate a response that a stranger can not. More generally, family members and friends are the only route by which an MCS patient's wishes and feelings may be communicated in the absence of an advance directive.
27. In United Lincolnshire Hospitals NHS Trust v N [2014] EWCOP 16, Pauffley J said as follows (quoting from the paragraphs of Aintree):

55 The test to be applied by the court is whether the treatment would be in the patient's best interests. Whilst –

"the starting point is a strong presumption that it is in a person's best interests to stay alive … this is not absolute. There are cases where it will not be in a patient's best interests to receive life-sustaining treatment". [para 35]

"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 to put themselves in the place of the individual patient and ask what his attitude 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." [para39]

56 In so doing the Court must consider whether the treatment in issue would be futile in the sense of being ineffective or being of no benefit to the patient. The treatment does not have to be likely to cure or palliate the underlying condition or return the patient to full or reasonable health, rather it should be capable of allowing the resumption of a quality of life which the patient would regard as worthwhile. The Court must weigh the burdens of the treatment against the benefits of continued existence and give appropriate weight to N's family life [para 40]"

28. In M v Mrs N [2015] EWCOP 76 I emphasised:

Respectability, security and a good face to the world achieved very high importance to her. It would be too easy to criticise these preoccupations as shallow; it would require discounting her feistiness, her pride and her commitment to her children.

…I have focused on the family's evidence because this is what they feel brings her personality into the courtroom. It is not always easy to see why it is that they select particular stories…

Ultimately, I have regarded it as part of a picture which helps me to understand Mrs. N's moral imperatives and the code by which she lived her life. The family has each, in their different ways, been able to create a clear and compelling impression of who Mrs. N is and what her values were. They have, if I may say so, given her a clear voice in this courtroom.

I am left with little doubt that Mrs. N would have been appalled to contemplate the early pain, increasing dependency and remorseless degeneration that has now characterised her life for so long. I have no difficulty in accepting the family's view that she would not wish to continue as she is. More than that, she would have wished to have discontinued her treatment some considerable time ago.

29. Similarly, in Sheffield Teaching Hospitals NHS Foundation Trust v TH & Anor [2014] EWCOP 4 I took the same approach:

38. In this court room TR and GM have transported TH from his hospital bed, in his minimally conscious condition, and their obvious love and affection for him has brought his character and personality to this court. They have communicated not merely his words and wishes, but also his feelings, too frequently conflated as the same concept, but in truth entirely different. There is no doubt at all that there was never a conversation in which TR and TH contemplated the kind of specific treatment that is now being debated here, and as such the stringent requirements of Section 24 are not met. There is no advance decision to refuse treatment here.

39. I have had the advantage here of listening to or reading the evidence of individuals who have populated TH's life for most of his adulthood. TH's friendships are enduring, faithful and lifelong. It says a great deal about him that he can inspire such friendship and, to my mind, it particularly qualifies these individuals to convey to me TH's own authentic voice.

None of these witnesses portray TH as a hero. With a lifelong dependency on alcohol and obvious "demons" in his past (as TR refers to them), he is manifestly a flawed man. He has always been, as TR put it, "a bit cookie". He is deeply suspicious of authority and of the reach of the State. He dislikes tactility, and though he and TR were plainly "soul mates", he would never, she told me, "hold her hand in the street". When he was unable to move around he refused to allow social workers to come into his house to bath him. TR told me he asked her to help him. Though the marriage had broken down and though it was no longer incumbent upon her to help, she did so she told me because she knew he could not face the indignity of being bathed by outsiders.

Another of TH's friends, "Fordie", told me in his statement that TH was at his best "unsupervised", as he put it. "Not being happy with authority figures of any description! Company and freedom to play his Slade tracks were the most important features in TH enjoying his life", he said. All who knew him knew that that dislike of authority and of outsiders very much extended to hospitals and "medics of any description however well meaning", said his friend Phil. Phil considered his present situation would be pure torture for TH despite what he (Phil) recognised to be the excellent ward staff.

TH was a talented drummer. All his friends say that when, through his Ataxia, he was no longer able to play, the life force seemed to simply drain out of him. Every day for as long as anybody can remember, he practiced, striving for perfection, and occasionally agreeing reluctantly to public performances in respect of which I am told he was extremely self critical.

30. Re-reading this judgment now, nearly three years on, I see again the sheer volume of the material that was put before me to assist me in understanding what TH's wishes and feelings would have been. I concluded:

If ever a court heard a holistic account of a man's character, life, talents and priorities it is this court in this case. Each of the witnesses has contributed to the overall picture and I include in that the treating clinicians, whose view of TH seems to me to accord very much with that communicated by his friends. I am left in no doubt at all that TH would wish to determine what remains of his life in his own way not least because that is the strategy he has always both expressed and adopted. I have no doubt that he would wish to leave the hospital and go to the home of his ex-wife and his mate's Spud and end his days quietly there and with dignity as he sees it. Privacy, personal autonomy and dignity have not only been features of TH's life, they have been the creed by which he has lived it. He may not have prepared a document that complies with the criteria of section 24, giving advance directions to refuse treatment but he has in so many oblique and tangential ways over so many years communicated his views so uncompromisingly and indeed bluntly that none of his friends are left in any doubt what he would want in his present situation.

31. Finally, I emphasised:

…whatever the ultimate weight to be given to TH's views it is important to be rigorous and scrupulous in seeking them out. In due course the clarity, cogency and force that they are found to have will have a direct impact on the weight they are to be given.

In this court room TR and GM have transported TH from his hospital bed, in his minimally conscious condition, and their obvious love and affection for him has brought his character and personality to this court. They have communicated not merely his words and wishes, but also his feelings, too frequently conflated as the same concept, but in truth entirely different.

32. I note that in Wye Valley NHS Trust v B [2015] EWCOP 60 Peter Jackson J was also able to identify what he termed P's 'intrinsic nature' and 'core qualities' which weighed heavily in the balance when evaluating 'best interests':

43. Mr B has had a hard life. Through no fault of his own, he has suffered in his mental health for half a century. He is a sociable man who has experienced repeated losses so that he has become isolated. He has no next of kin. No one has ever visited him in hospital and no one ever will. Yet he is a proud man who sees no reason to prefer the views of others to his own. His religious beliefs are deeply meaningful to him and do not deserve to be described as delusions: they are his faith and they are an intrinsic part of who he is. I would not define Mr B by reference to his mental illness or his religious beliefs. Rather, his core quality is his "fierce independence", and it is this that is now, as he sees it, under attack.

45. I am quite sure that it would not be in Mr B's best interests to take away his little remaining independence and dignity in order to replace it with a future for which he understandably has no appetite and which could only be achieved after a traumatic and uncertain struggle that he and no one else would have to endure. There is a difference between fighting on someone's behalf and just fighting them. Enforcing treatment in this case would surely be the latter.

33. In this case CP has put information before the Court which, if accepted on face value, would indicate that her father was a 'devout Christian who prayed every day'. In her statement CP asserted that 'faith was a source of positive emotion for our father'. She told me that she would regularly read from the Bible 'as would my father'. She said that she and her father would 'seek strength' from passages of the Old Testament such as:

'Deuteronomy' 32:39: 'See now that I myself am He! There is no god besides me. I put to death and I bring to life, I have wounded and I would heal and no-one can deliver out of my hand'

34. CP selected another Old Testament quotation:

'Samuel' 2:6 the Lord brings death and makes alive; He brings down to the grave and raises up.

To avoid any doubt, CP underscored her own interpretation of these quotations… 'In other words, nobody but God gives life and nobody but God takes life away'. These are undoubtedly her beliefs but whether they are her father's is an entirely different matter. In many cases I have found family and friends to be, as I have set out above, the only real conduit through which P's wishes can be communicated. In this case RY's 'voice' has remained resistantly silent. That has not been through any want of effort by Mr Sachdeva QC, who strained to unearth any detail he could that cast light on the codes and beliefs by which RY lives his life. Ultimately, only the most superficial details of RY's life became known.

35. The evidence permits only the most generalised conclusions. RY is an independent man who wanted to make the most of life. He was an engineer in Port Talbot, a keen supporter of Swansea City FC. He had been able to travel abroad and enjoyed the independence of his driving licence. He did not go regularly to church but certainly, on one occasion, told CP that 'he had been having a word with Him upstairs' which she interpreted and I accept correctly, as a reference to silent prayer. There was no reference to his having contemplated what he would wish to happen in such circumstances as he now finds himself. I was told that he visited his doctor regularly and received a codeine prescription for pain in his shoulder. CP proffered this as an illustration of his determination to survive. Of course, it could just as easily indicate his wish to avoid pain.
36. RY was an early riser, driving himself to the shops in the morning. CP told me her father liked to 'cook from scratch' and had disdain for 'the microwave meal'. This was put forward to illustrate his concern for his own health and well being. I accept that but I do not extrapolate from it that his efforts to keep himself fit illustrate that he would have wanted to live in any circumstances. Finally, I should emphasise that CP thought her father 'full of fighting spirit' and 'positive in the face of adversity'.
37. G also gave evidence. She is RY's niece. She gave a statement in which she asserted: 'I believe it is his wish that the sanctity of life is paramount to him and he would accept any form of life rather than none at all, including one that may be perceived by others as extremely limited and at times, painful'. In her oral evidence she was thoughtful, reflective and, I thought, tried hard to be both honest to the Court and loyal to CP. I found her a witness full of integrity. When asked directly what she thought RY would want in the circumstances of this case she said "I don't think I can speak, I don't think it would be fair".
38. I have felt unable to rely on CP's account of her father's wishes for a number of reasons. I do not doubt that she loves him dearly, even though I suspect that their relationship has not always been equable. I also consider that she has a strong faith. She told me that her wishes were indistinguishable from those she has advanced as her father's i.e. even a wholly compromised life, punctuated by pain, would be better than no life. It is also quite plain that she has not accepted the medical evidence and that her belief both in her father's present abilities and future prognosis is very unrealistic.
39. There are however some unfortunate aspects of the evidence which undermine CP's credibility as a witness. It is necessary to include them as they form part of my reasoning but I intend to do so perfunctorily so as to minimise her distress at a difficult time for her, conscious that this will be a public judgment. CP has behaved in a manner on the ward which has been alarming to both patients and staff, she has been voluble and offensive in her criticisms of medical staff and she has, now by her own admission, told lies. She has given an account of her family life which has not always been consistent, indeed it has been, at times, contradictory. She has also asserted that her family would say to this Court 'whatever she told them to'. During the course of her evidence I sensed vulnerability in CP and asked her whether she had ever suffered mental health problems. She told me, guilelessly, that she had suffered mental health problems as a girl and was currently taking anti-depressant medication. I propose to say nothing further as to the facts of these matters other than to identify that CP is an unreliable chronicler of events.
40. Mr Badwan had assumed that RY's wishes and feelings were clear and accurately asserted by his family. At an earlier hearing, I had made the same assumption. For the reasons I have just outlined we were both wrong. Mr Badwan told me that if it was the case that RY would not have wanted the proposed medical course he would regard that as so significant as to be determinative. Dr Gorst told me exactly the same, though on a different premise. He considered that if I was satisfied that for religious beliefs or otherwise RY would prefer to endure the pain of deep suctioning with limited, if any, long term medical benefit, then he too would consider that to be determinative in this case. It is therefore particularly sad that, despite the efforts made, it has not been possible to identify RY's own wishes. I have arrived at the general conclusion that RY was a private, decent man who was not given to discussing his emotions and beliefs and had never allowed himself to contemplate, or at least discuss with others, the parlous situation in which he now finds himself. Perhaps this is no more (or less) than the 'sang froid' of an older generation.
41. Thus I am in the position here of evaluating RY's best interest with no evidence of sufficient quality to indicate to me what his wishes would be, were he in a position to communicate them. It would be both wrong to speculate and, in my judgement, flawed to assume that in the absence of clear and reliable evidence as to RY's views, the emphasis on the 'sanctity of life' becomes in someway greater. This powerful and important consideration will always weigh heavily in the balance but it must not be permitted to quash all other considerations. Those whose voices do not carry through to the courtroom are just as entitled to protection as those individuals in the cases I have referred to above.
42. The starting point in considering these matters is Airedale NHS Trust v Bland [1993] AC 789. There Hoffman LJ engaged directly and in plain terms with the view points that CP has expressed:

Our belief in the sanctity of life explains why we think it is almost always wrong to cause the death of another human being, even one who is terminally ill or so disabled that we think that if we were in his position we would rather be dead. Still less do we tolerate laws such as existed in Nazi Germany, by which handicapped people or inferior races could be put to death because someone else thought that their lives were useless.

43. The analysis requires to be followed through:

The point to be emphasised is that there is no morally correct solution which can be deduced from a single ethical principle like the sanctity of life or the right of self-determination. There must be an accommodation between principles….

44. In the same case, in the House of Lords, Lord Goff formulated the question for the Court at 868 as follows:

"It is crucial for the understanding of this question that the question itself should be correctly formulated. The question is not whether the doctor should take a course which will kill his patient, or even take a course which has the effect of accelerating his death. The question is whether the doctor should or should not continue to provide his patient with medical treatment or care which, if continued, will prolong his patient's life. The question is sometimes put in striking or emotional terms, which can be misleading. For example, in the case of a life support system, it is sometimes asked: should a doctor be entitled to switch it off, or to pull the plug? and then it is asked: can it be in the best interests of the patient that a doctor should be able to switch the life support system off, when this will inevitably result in the patient's death? Such an approach has rightly been criticised as misleading, for example by Professor Ian Kennedy in his paper in Treat Me Right, Essays in Medical Law and Ethics and by Thomas J. in Auckland Area Health Board v. Attorney-General [1993] 1 N.Z.L.R. 235, 247. This is because 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 medical treatment or care"

"But 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, 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. I do not consider that, in circumstances such as these, a doctor is required to initiate or to continue life-prolonging treatment or care in the best interests of his patient. It follows that no such duty rests upon the respondents, or upon Dr. Howe, in the case of Anthony Bland, whose condition is in reality no more than a living death, and for whom such treatment or care would, in medical terms, be futile"

45. Mr Sachdeva has, on behalf of CP, made ambitious submissions as to how the evidence in relation to RY's wishes and feelings should be evaluated. He contends, as I understand it, that RY's own views are 'clear', he also submits that they should be the 'most important' and 'magnetic factor' and that to fail to give them such prominence would to be a breach of CP and RY's Article 8 rights. Having come to an entirely different view as to the quality of the evidence I do not need to express any view on these points. I do however, permit myself to observe that Article 8 embraces the declaration sought by the Health Board, if found to be in RY's best interest.
46. With para 5.31 of the Code of Practice at the forefront of my mind, I have come to the very clear conclusion that deep suctioning can properly be described as "burdensome" to RY. There has been some debate as to how this "burden" should be characterised. Ms Gollop, referred to it as "distress". To my mind that will not do. Dr Gorst, relying on his experience of patients who are able to proffer a description, relates that it has been said to be "like a hot poker being inserted into the airways". Dr. Baker said it was "akin to the trachea being poked with a stick". Because it entails a choking sensation, Dr Gorst settled upon the phrase 'primal panic pain" which resonates with descriptions that I have been given in other cases in similar circumstances. It also seems consistent with simple anatomy as it involves, for its duration, an obstruction of the airways.
47. The true question here however, is not whether it is "burdensome" but, focusing on the terminology of the Code of Practice, whether it is "overly burdensome". That is to say, whether it can be rationalised as a proportionate intervention in the context of RY's medical welfare, having regard to his overall clinical situation. Dr Gorst articulates this as the need to assess "the whole patient" and to survey the broad gamut of his "holistic needs". Only in this way, he reasons, can the utility of the tracheostomy be assessed as being in RY's 'best interests' or not.
48. Dr Gorst considers that, with the benefit of hindsight, the decision to insert the tracheostomy was the wrong one. At the time the decision was made none of the doctors had appreciated that RY had developed the capacity to experience pain, either to the extent that it is now realised or at all. Had Dr Gorst had the benefit of the newly emerged consensus, he told me that he would not have supported the application to seek a declaration that the insertion of the tracheostomy was in RY's best interest. Dr Gorst may very well be correct, indeed I strongly suspect he is. There have been times, in recent weeks, when suctioning has been required very frequently during the course of a 24-hour period. For a patient with a reasonable prognosis that might well have been a proportionate interference but RY's prognosis is a bleak one.
49. A paradox has arisen in this case. There is subtle but clinically significant evidence of what Mr Badwan has described as an "upward trajectory" in RY's level of awareness. This requires to be acknowledged, as I have said, without being overemphasised or exaggerated. By contrast, RY's general physical condition is deteriorating. Here Ms. Gollop speculates that this may involve a period of "plateauing", with a more rapid deceleration towards the end of life. My own evaluation of the evidence of Dr Gorst is that he considered that 'decline' is likely to be rather more progressive, illustrated by increased thinning of the skin (which has a susceptibility to tear) and consistent muscle wastage (which raises the prospect of pain on turning).
50. Mr Badwan emphasises that it is necessary to factor into this matrix the received view that MCS patients may have only intermittent awareness. Thus, for RY, the pain involved in deep suctioning may be experienced on some occasions and not others. Mr Badwan, with this Court's authorisation, has conducted an intensive "awareness assessment". As I believe is his frequent practice, he encouraged videos to be filmed of RY. It is, at least in part, from these videos that Mr Badwan has reviewed his initial position i.e. that RY was in a Vegetative State and now concluded that he is in a Minimally Conscious State.
51. I have been invited to watch highlighted extracts from these videos. Though I contemplated doing so, I ultimately decided against it. My reasoning on this requires to be stated. Viewing these videos, in my judgement, contains a real risk for the lay person, which of course in this respect includes both the lawyers and the judge. As videoing took place over several days, a selection of 20 minutes or so (which is what it was suggested I might see) runs the risk that I might gain a distorted impression of RY's overall situation. Similarly, I may, as a lay person, struggle to identify what Mr Badwan sees in the videos, informed by his own professional expertise. In both situations and more widely there is the risk that I might substitute my untutored impression for those of the expert. My task, as I see it, is to evaluate Mr Badwan's assessment of the core material, in the context of his evidence as a whole. Some judges, I am aware, have taken a different approach and I can entirely see how there is room for differing views.
52. I also feel bound to record some unease with these video recordings more generally. It is axiomatic that they are highly invasive of RY's privacy and that he has no capacity to consent to them. They have been viewed by a variety of professionals. Though Mr Badwan has found them useful here, I do not consider that video recordings should ever be regarded as a routine investigative tool. Both the videoing and their distribution will require strong and well-reasoned justification.
53. I have come to the clear conclusion that deep suctioning via RY's tracheostomy causes him pain, which may at times be considerable and at others less so. The tracheostomy serves its immediate function in the sense that it can, when required, substitute for RY's compromised cough reflex and clear secretions. In this sense the tracheostomy cannot be described as futile. The real question is whether, in the context of RY's poor prognosis and declining physiological circumstances, the deep suctioning can be said to contribute either to the quality or expectation of his life. Were it to do so it might justify the pain undoubtedly involved. I am satisfied on the evidence that it does not. Society cannot ask those in the medical profession to cause harm without purpose. To do so compromises both their integrity and, inevitably, the dignity of their patient.
54. However, I have concluded that it would not, at this stage, be right to grant the Health Board's application. I draw back from doing so for two reasons only. Firstly, as Mr Chisholm has properly identified, there was, in the days leading to this application, and indeed at the hearing, much repositioning and changing of views by the doctors involved in this case. As I have emphasised above I consider this to reflect the quality and experience of the experts and clinicians before me and their readiness to yield, where appropriate to the opinions of others, recognising that no one discipline will be predominant in matters of this kind. Whilst I am entirely satisfied that I have been presented with evidence which has now allowed me to come to a clear conclusion, I also consider that it is appropriate to allow a short period for all the professionals and the family involved to reflect on my judgment. The realisation that deep suctioning causes pain, however it is characterised, has come late in the day. CP may wish to reflect that this pain comes not 'by act of God'(as she might see it) but through the intervention of reasonable and well intentioned medical treatment. I believe that CP is entitled to the opportunity to reflect on the ramifications of this information. It will, in my judgement, be very much in RY's best interests if his daughter and the experts can ultimately agree and therefore plan together the circumstances in which he should live whatever time remains to him.
55. Secondly, Mr Chisholm prefaced his submissions by informing me that the nursing records reveal that there have been 4 clear days, consecutively, when deep suctioning has not been required. To this must be added a perceptible decline in the need for the procedure in the course of the last 2 weeks. In my judgement, deep suctioning has become, for the moment, delicately poised between what can properly be described as 'burdensome' and that which is 'overly burdensome'. In the absence of understanding RY's own views I believe the balance tips, for now, in favour of supporting life.
56. I can easily foresee that this balance could alter. I do not want the Health Board to regard my refusal to grant the declaration they seek as indicating that deep suctioning is in RY's best interest. Whilst I have much sympathy with Mr Chisholm's submission that the pain caused by this procedure can never be justified and militates in favour of the immediate removal of the tracheostomy, I feel instinctively reluctant to endorse the Health Board's plan at a time when there has been no deep suctioning at all for 4 days. If this procedure becomes necessary as a regular and daily part of RY's life it will not be in his best interests and the Health Board must return to this Court for their plan to be endorsed. If the Health Board and CP are able to agree that deep suctioning be discontinued it will not be necessary for there to be a return to Court at all. I am satisfied that the palliative regime outlined by Dr Baker will ensure that whilst RY's life will be much shortened it will be free from pain and dignified.

The Professor Wade Question.

57. During the course of exchanges with counsel, the option of instructing Professor Derek Wade was discussed. Mr Chisholm, correctly, drew me back from it. He submitted that if the Court ultimately thought it to be necessary, the Health Board would not oppose it. However, he contended that the evidence presently before the Court enabled it to take a decision. He was entirely correct. Rather alarmingly however, Ms Gollop submitted that Professor Wade should not be instructed because he had shown himself to be prepared to go outside the National Guidelines, which he himself had crafted (along with Mr Badwan and others).
58. In M v Mrs N (supra) I had been very much impressed with Professor Wade's knowledgeable and erudite contribution to the case. I was therefore very surprised to hear that Ms Gollop identified that case as a basis for her objections, on behalf of the Official Solicitor, to Professor Wade's instruction.
59. This is a misunderstanding of my judgment. The case involved withdrawal of nutrition and hydration for a patient in MCS. There was no precedent for it. Accordingly, the Court and the parties needed evidence of the highest quality. In his assertion that the Guidelines should be seen as such and not interpreted as a straight jacket to diagnosis Professor Wade did not stray from his obligation to the Court as a professional witness. Moreover, he supported his views with well respected and peer reviewed research. I observed:

42. Ultimately, Professor Wade considered that the Guidelines generally, but this feature in particular (i.e. visual fixing and tracking), should not be regarded as a strait jacket to diagnosis nor to oust the proper application of the differential diagnostic method (i.e. consideration of the full symptomatology). This was to go too far for Mr. Badwan and Dr. Walton. They considered that it threatened uniformity of approach to these cases nationally and in an area of medicine where the need for consistency weighs particularly heavily. The Guidance (2013) can hardly be said to be dated they argued.

43. I find both approaches here to be so coherently reasoned that I am unable to prefer one to the other. Fortunately, I do not consider that I need to make a choice because the reality of the disagreement is far narrower clinically than is the theoretical divide. Mr. Badwan and Dr. Walton ultimately accept that whilst the assessment modalities may have their limitations in the context of neurological degeneration, they are all that is currently available and do cast some light on Mrs. N's level of awareness. They agreed that notwithstanding their reservations about the correct terminology here that if they were evaluating a patient with sudden onset brain injury they would both consider her to be at a low level of MCS (i.e. the most severe). Professor Wade accepted the complications of assessing Mrs. N's awareness, particularly in consequence of her severe motor impairment. He observed:

"I think that the primary observation that I would make in relation to formal assessments is that they should be considered as a structured way to make observation of behaviour where, the important aspect is to record the actual behaviour seen so that it can be interpreted in the clinical context. Interpretation is as important as observation."

60. These difficult cases raise complex medical, legal and ethical issues. It is important that all involved remain open to the views of others and recognise that the tension of disagreement may, in time, lead to greater mutual understanding.

Post Script

61. Shortly after this judgment was delivered to the parties I was told that RY 'died peacefully in hospital'. I delayed publication of the judgment in order not to add to the family's distress at a difficult time. Yesterday I received a message indicating that they are now content for the judgment to be published.