Neutral Citation Number:  EWCOP 22
Case No: 12967092
COURT OF PROTECTION
Royal Courts of Justice
Strand, London, WC2A 2LL
THE HONOURABLE MR. JUSTICE COBB
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(By her litigation friend, SL)
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(1) Sutton Clinical Commissioning Group
(2) The Royal Borough of Kingston on Thames
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Katie Scott (instructed by Irwin Mitchell LLP) for the Applicant
Victoria Butler-Cole (instructed by DAC Beachcroft LLP) for the First Respondent (CCG)
The Second Respondent (Local Authority) was neither present nor represented
Hearing dates: 4 & 5 September 2017
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This judgment was delivered in public subject to reporting restrictions. The judge has given leave for this version of the judgment to be published on condition that (irrespective of what is contained in the judgment) in any published version of the judgment the anonymity of the incapacitated person and members of their family must be strictly preserved. All persons, including representatives of the media, must ensure that this condition is strictly complied with. Failure to do so will be a contempt of court.
The Honourable Mr. Justice Cobb :
1. PL is 79 years old. A little over a year ago she suffered a catastrophic stroke which has left her very severely physically disabled, brain damaged, and significantly incapacitated. Although PL is receiving good quality nursing care round the clock in a residential home, she is being kept alive only through the provision of Clinically Assisted Nutrition and Hydration (‘CANH’) through a Percutaneous Endoscopic Gastrostomy (‘PEG’) tube.
3. By application dated 24 April 2017, PL’s son, SL, acting as her litigation friend, has invited the court to consider whether it is in his mother’s best interests that her life should be prolonged by the provision of CANH. Specifically, he seeks a declaration that it is not in PL’s best interests that CANH should be continued, with the inevitable and foreseeable consequence that PL will shortly thereafter die. PL’s family are united behind the application.
4. The Sutton Clinical Commissioning Group (‘CCG’), which has the responsibility for commissioning the nursing component of PL’s care home placement, is neutral on the application, but welcomes the engagement of the Court of Protection for determination of the issue. It has taken a responsible attitude to the litigation, having earlier indicated that it would itself have made an application to the Court for declarations and other relief had SL not done so.
5. I am conscious that no party has sought to argue against the outcome for which SL has applied, and given the immense implications, I have thought it right to review the evidence and the issue with particular care.
6. But before I embark on that exercise, I must pay special tribute to SL and to PL’s husband, ML, who have engaged with the court process, and in an undoubtedly upsetting two-day court hearing, with great courage and dignity. Their profound concern for PL is obvious. They have also nobly shown appropriate consideration to, and respect for, the views of all those involved in PL’s care.
8. This application was initially brought under section 21A of the MCA 2005, principally I believe so that SL could benefit from public funding. Following the recent decision of the Court of Appeal in Director of Legal Casework & Others v Briggs  EWCA Civ 1169, SL sought permission to re-constitute the application as one brought under section 15 and section 16 MCA 2005 and in compliance with Practice Direction 9E to the Court of Protection Rules 2007. I granted permission at the commencement of the final hearing for the application to proceed on this basis. I have made a corresponding amended transparency order.
i) What is PL’s current condition? What is her level of consciousness or cognisance? What is her awareness of the world around her?
ii) Does PL have the mental capacity to make a decision about the continuance of CANH? If she is assessed to lack capacity presently, is there a prospect that she could develop the capacity to make that decision?
iii) If she lacks capacity, is it in her best interests that I should confirm the continuing delivery of CANH? In answering this question, I should consider:
a) Her previous stated views on life-support, and on sustaining life artificially, in the event that she is totally dependent on others, and incapable of functioning in many essential domains of her life;
b) The quality of her life at present; whether there is any or any significant enjoyment in her life; whether she experiences pain and/or distress, and if so how that is managed;
c) Her prognosis if CANH were to continue for the foreseeable future; whether there is any real prospect of recovery of any of her functions and improvement in the quality of her life;
d) The prognosis for PL if CANH were to be discontinued: what would the palliative care package include, in the event that the CANH were to be discontinued, and where would her palliative treatment optimally be delivered (i.e. would she need to move from her current residential care home?);
e) The prognosis for PL if I were to authorise the discontinuance of nutrition but not hydration;
f) The views, wishes and feelings of the family and her carers;
g) PL’s dignity;
h) The sanctity of life generally.
10. Over two court days I heard evidence from Dr. Phillip McCluskie, Consultant in Rehabilitation Medicine, from Miss C from the Royal Marsden, a Speech and Language Therapist (‘SALT’), who has assessed PL on several occasions, and provided PL with therapy over many months, and from Professor Lynne Turner-Stokes, Consultant in Rehabilitation Medicine and Chair of the Royal College of Physicians’ Working Party into Prolonged Disorders of Consciousness. There was no single independent expert advising the court on diagnosis, prognosis or best interests (although Dr McCluskie had not been involved in the treatment or care of PL and so his status is akin to an independent doctor to whom the CCG made a referral), but I am satisfied that I have acquired all the relevant information from the witnesses from whom I have received reports and/or heard orally.
11. I heard oral evidence from SL (PL’s son and litigation friend), from ML (PL’s husband), and from Mrs. M (PL’s only surviving sibling). I read a number of further documents including supporting statements from a close friend and from the family’s Methodist minister. I also read two helpful statements (with detailed attendance records) from the solicitor instructed by SL, who had visited PL on two occasions.
12. I reserved judgment for as short a time as I felt I could, given the obvious anxieties of the family about this situation, but long enough to give me chance to reflect on the evidence which I had received, and to provide a reasoned explanation for my decision.
Core legal principles
i) The jurisdiction of the Court of Protection has been properly engaged in these circumstances: see the Code of Practice para. 5.29 - 5.36: (“where there is any doubt about the patient's best interests, an application should be made to the Court of Protection for a decision as to whether withholding or withdrawing life-sustaining treatment is in the patient's best interests” §5.36);
ii) I can only make a decision in relation to treatment for PL if I am satisfied that she lacks capacity to make the relevant decision: see section 1(2), section 3 and section 4 MCA 2005;
iii) Any decision made under the MCA 2005 for or on behalf of a person who lacks capacity must be made in her best interests (section 1(5) MCA 2005); in doing so, I must take into account 'all the relevant circumstances' (section 4(2) ibid.);
iv) The MCA 2005 specifically provides for me to make the decision on PL's behalf in relation to life-sustaining treatment (see section 16(2) and section 17 MCA 2005);
v) In making such a decision, I must not be motivated to bring about PL’s death (section 4(5) MCA 2005); the question which I should ask (as I have at §3 above) is whether it is in PL’s best interests to continue with the CANH?
vi) The burden of establishing that the discontinuance of life-sustaining treatment is in a person’s best interests lies with the person who asserts that it should be withdrawn: R(Burke) v GMC (OS Intervening)  QB 424 at §213(o);
vii) The question whether PL lacks capacity within the meaning of the MCA 2005 is decided on the balance of probabilities (section 2(4) MCA 2005); similarly, where I make findings of fact, as I do throughout this judgment, I apply the same civil standard having regard to the guidance in Re B (Care Proceedings: Standard of Proof)  UKHL 35 (see Lord Hoffman at §2).
PL – her life, prior to August 2016
14. PL is, as I have mentioned, 79 years old. She has been married to ML for 54 years. Two children were born to the marriage, though sadly their adult daughter died in 2010. She worked in various administrative roles, but took early retirement when she was in her late-50s, and has since engaged in much voluntary and charitable activity. She had been a volunteer leader for the Brownies and Girl Guides for many years and until shortly before her stroke had helped to run a mother and toddler group at her local church. Significantly, she had been a lay assessor for the Care Quality Commission, assessing nursing homes.
15. Prior to the stroke, PL was a physically active and fit woman; she had been a keen tennis player for many years, playing several times per week. Latterly she had played table tennis, to which she had achieved county championship standard. She had a passion for crafts, sewing, and baking, and she greatly enjoyed foreign travel, visiting many corners of the globe with her husband. In July 2016, she travelled to Switzerland and Italy on holiday with her sister. I believe that on this trip they walked on Gornergrat in Zermatt; they sent postcards to the family joking that they had climbed the Matterhorn. She is a committed Christian with a strong Christian faith; she believes in life after death, and I received evidence, which I accept, that she does not fear death. She has a firm belief that she will be re-united with her daughter after death. She had a good social life, though many of her circle of friends have now sadly passed away. She is devoted to her grandsons whom she has visited regularly.
17. PL suffers from atrial fibrillation, which over the years has been managed by medication. On three known occasions, she suffered a TIA (Transient Ischaemic Attack); these gave her, I believe, a heightened sense of her own mortality. Her first TIA was in 2009; it took her six months to recover. Her own mother had suffered multiple strokes leaving her increasingly dependent, and I find that PL dreaded suffering the same fate.
18. On 24 August 2016, PL suffered a serious, indeed devastating, bilateral stroke secondary to her atrial fibrillation. She was treated initially in Worthing Hospital, before moving to St. George’s Hospital, Tooting, as the stroke developed, and overwhelmed her. At St. George’s, a mechanical thrombectomy was performed, without success; she was placed in an induced coma for two weeks. Brain imaging revealed a large left hemisphere infarct, and a right hemisphere’s thalamic haemorrhage, with evidence of old right occipital infarct.
19. ML and SL recall being advised at St George’s that PL may well not survive the stroke; they accepted this, and reconciled themselves to that outcome, knowing PL’s views about the prospects of a life on artificial life-support (to which I turn below). On 3 September, she was moved to Kingston Hospital. At the point of her transfer, the consultant neurologist from St. George’s (Dr. H) reflected that “her prognosis was likely to be very poor based on the severity of her brain damage, reduced conscious level and age … PL had extremely poor rehabilitation potential”.
20. While at Kingston Hospital, on 23 September 2016, a PEG tube was fitted for the purposes of CANH. Dr. U, the treating Consultant Stroke Physician, states that he himself explained the procedure of PEG insertion, including the benefits and complications, to ML though I am advised that there is nothing in the medical records which sheds further light or explains the circumstances in which that occurred. It is said that ML gave his consent to the insertion of the PEG, but he does not recall being given any or any significant explanation of the implications of CANH; he has a significant hearing impairment which may have some relevance to his lack of clarity on this issue. The absence of clear evidence about the circumstances in which the PEG was fitted is unfortunate, particularly given that it is accepted that when the naso-gastric tube had been fitted at St. George’s some weeks earlier the family had indicated that PL would not have wanted this.
(i) PL’s current condition: What is her level of consciousness? What is her awareness of the external world?
22. PL is now described as very “frail”. The stroke has rendered her paralysed down the right side of her body, with minimal left-sided functioning. She can turn her head, though not fully to the right side. She has some minor left leg movement, which SL believes she uses to signal distress. She has some vision, but probably limited to her left eye. She requires double-handed care and full body hoist for all transfers. She has limited swallowing ability, and is nil by mouth; she shows no interest in wanting to eat. She is doubly incontinent.
23. She spends her day in bed or in a chair. She has no speech, and is unable to communicate verbally, although she appears to be able to follow some simple sentences at times; she sometimes squeezes her son’s hand when he places it in hers. The lay and professional consensus is that she is unable to process anything but the simplest statement or question, and generally only if the question is accompanied by actions, prompts or context. Miss C, speech and language therapist, describes how she is generally unable to choose an object from a choice of two shown to her: “she does not show the ability to make the choice or initiate any movement with her eyes or hand/arm”. She may nod when she wants to affirm, but it is felt that she is less likely to shake her head when she wishes to convey a negative response; she often does not respond to questions at all. She spends much time asleep. She is sometimes uncooperative, for instance in relation to dental care, by clamping her mouth shut – which, as SL observed, is her only way of exercising any control over her current situation. During the last month, she has been noticeably less responsive according to ML and SL, who told me, separately, that they felt that she had become less communicative, and more “vacant”. ML felt that the “situation seems to be getting worse not better”. This coincides with the reduction and cessation of the prescription of lorazepam which might, if anything, have had the opposite effect.
24. She is described in the report of a Consultant Psychiatrist who recently assessed her for depression as suffering a form of ‘locked-in syndrome’, with a “severe cognitive impairment and … most likely to suffer from severe onset of vascular dementia of sudden onset after suffering from severe right sided CVA and left frontal lobe infarct”.
25. She does not appear to listen to the radio, even though she had previously taken pleasure from listening to classical music or Radio 4. She does not appear to watch television. She has minimal concentration. Dr. McCluskie felt that she was aware of her environment, and of personal comfort.
26. PL’s condition is not diagnosed or described by the medical experts by reference to either of the well-recognised categorisations: ‘minimally conscious state’ (MCS), or ‘vegetative state’ (VS) as those terms are defined in the PDOC Guidelines. Consequently, I do not attribute to her either label. Indeed, whilst these terms are undoubtedly useful to describe the conditions of certain patients for treatment, management, care or other purposes, inevitably each patient is different; some patients will have characteristics of one condition and characteristics of another, but not classically all features within the one definition. There is, in any event within each definition, potentially a wide range of variables – i.e. there are, plainly, many degrees of consciousness (from those who are only just above vegetative to those who are bordering on full consciousness) within the broad category of ‘minimally conscious state’, a point which Baker J made (at §46) in Re M (Adult Patient)(Minimally Conscious State: Withdrawal of Treatment)  1 WLR 1653 (‘Re M’). Even the medical profession regard ‘consciousness’ as a somewhat elusive concept, and its labelling can be misleading: see Aintree University Hospitals NHS Foundation Trust v James  UKSC 67,  AC 591;  3 WLR 1299 (“Aintree”), where P was said to have “very limited” consciousness, and Peter Jackson J at first instance fairly observed that the word “minimal” was rather an unhelpful misnomer.
27. Many of the subjects of similar applications before the Court of Protection whose conditions are described in the caselaw to which I have been referred have been described by reference to the terms ‘MCS’ and/or ‘VS’. PL has some features of a patient with MCS, but she is not described as in a MCS. In some respects, her condition is more disabling than a patient with MCS, and her functioning more limited (see, for instance, §31 below).
28. Dr. McCluskie is of the view that PL is not in a MCS because she appeared to give reliable and consistent responses to his questions. There was other compelling evidence available to me from the speech and language therapists (and otherwise) that she does not in fact generally give consistent and reliable responses. Indeed, I have seen a useful chart which shows that to a set of 10 questions posed over the course of 8 weeks, she gave widely inconsistent responses with no discernible pattern. I am satisfied that she is more accurate in her responses where comments or questions are accompanied by gesture, or physical prompts.
29. It would be wrong in my view to conclude that where the patient is not diagnosed as MCS or VS, a significantly different approach to the determination of the case should be taken. Quite apart from anything else, as is well-recognised, the diagnosis is often difficult, and may indeed change over time. So just as it would not necessarily follow that someone who is in a ‘vegetative state’ would be bound to have life-sustaining treatment discontinued, the fact that someone retains consciousness and can answer questions is not in itself a reason not to consider discontinuance of life-sustaining treatment: see An NHS Trust v A  2 Lloyds Rep Med 29. It all depends, as I have indicated, on the individual facts, and every decision must ultimately be governed by what is in a patient’s best interests.
“She has a profound aphasia both expressive and receptive and she is also dyspraxic. And that is why she cannot follow the spoken word. When you talk of doing things in a directive way she cannot do this because she is dyspraxic”.
31. I was interested to note that Dr. McCluskie considered that the ‘best case scenario’ for PL in the event that she was to make unexpected improvement in her rehabilitation would in fact be less good than the ‘best case scenario’ which was predicted and described for Mr. Briggs (who was in a MCS) on the evidence in his case: see §51 of Charles J’s ‘Overview’ in Re Briggs (Incapacitated Person)(Medical Treatment: Best Interests Decision) (No.2)  EWCOP 53  4 WLR 37 (“Briggs (No.2)”.
32. In February 2016, the speech and language therapy team worked intensively with PL in order to maximise PL’s potential to communicate; I deal with their conclusions below (see §33 below). In early March 2017, an IMCA was appointed to consider PL’s best interests further; I have seen her helpful report.
33. The pessimistic view of PL’s prospects of rehabilitation expressed a year ago by the Consultant neurologist at St. George’s (Dr. H) has proved, sadly, to be all too accurate. It is the clear view of Dr. McCluskie, formed following assessment conducted in the last few weeks, that there is indeed nothing more that can be done to assist or promote her rehabilitation; there is only a negligible chance that she may improve in her ability to communicate. It is possible but “unlikely” that she will be able to express herself in a more consistent way. Miss C (SALT) is of broadly the same view; she told me (coincident again with the view of Dr. H) that the point by which most recovery would take place has in fact passed, and any further improvement is now likely to be “minimal”. Miss C felt that there was no benefit to PL in further speech and language therapy.
(ii) Capacity questions
34. Given my description (above) of PL’s current state, it is not at all surprising that there is a consensus among professionals and family that PL lacks capacity to litigate, and to make the crucial decision about life-sustaining treatment which is at the heart of this case. Her stroke has, in my judgment, undoubtedly caused her a significant “impairment of, or a disturbance in the functioning of, the mind or brain” (section 2(1) MCA 2005). PL has a significantly reduced ability now to interpret vocal input, aswell as having difficulty in expressive output. There is, in Dr. McCluskie’s view, evidence of further brain damage which would contribute to her cognitive defects “including memory, concentration, speed of processing and executive functioning.” He adds: “it is for this reason that I do not anticipate that she will ever have capacity make a decision about whether she continues to receive parenteral nutrition and hydration”.
35. In the circumstances, there is unsurprising unanimity of view by the professionals, which I accept, that PL is not likely to gain capacity to make the decision about continuance or discontinuance of CANH. In terms of her decision-making in the future, it is felt that the best that can be hoped for (which is assessed as being remote) is that she may be able to make simple choices about what to wear, or whether to visit the garden. That limited comprehension and articulation falls far short of what would be required to understand, retain, or use or weigh complex information about the continuance of CANH, and communicate her decision accordingly (section 3 ibid.).
(iii)(a) Previous wishes and feelings of PL
36. PL did not make any formal advance decision to reflect her wishes and feelings about life-sustaining treatment, in accordance with requirements of section 24-26 MCA 2005 or at all. There is evidence that she would not have known of the possibility of doing so. Had she done so, her decision would have been binding.
38. The views which PL expressed to her family and friends about the prospects of being dependent on life support, or receiving artificial assistance in order to survive, are nonetheless in my judgment clear. She simply would not want this.
39. I turn to the specifics. SL told me that he recalls a conversation with his mother in 2009 after her first TIA in which she had told him expressly that she would not wish to be ‘kept alive’ artificially. By that time, she had had first-hand experience of the death of a good friend who had passed away in a local hospice. She told him: “If I can’t have a full life, I just want to go.”; and later “if I was being kept alive and no one was willing to do it, I would pull out the tubes myself.” SL recalls that those were her words, or a very close gist of them.
40. Since that time, PL experienced the decline and death of her own mother following multiple strokes; she had said to SL at the time “I never want anything like that”. She had experienced the death of her daughter. She had suffered further TIAs. She had further similar conversations with her husband and with her son. In 2016, she told SL that she would “pull out the bloody wires myself” if she had a major stroke leaving her on life-support; SL commented that it would not be in his mother’s nature to swear, and her use of an expletive in this context indicated to him, as it does to me, the strength of her feelings on this issue. In July 2016, only weeks before she suffered her devastating stroke, while visiting the memorial to her deceased daughter, she asked her husband (as she had in the past) to re-assure her that she would not be “allowed to drift” in the event of a stroke. She had made similar comments to her sister, Mrs. M.
41. In evaluating the family’s evidence on this, I have been careful to check, so far as I am able, whether this evidence has been tainted or influenced or nuanced to any degree by their own views. I am satisfied that it has not. I am equally satisfied that the very situation which PL contemplated with dread if not horror, is the one in which she finds herself now.
42. PL is currently not able, I find, to communicate her views about her future treatment or her present condition on any reliable level. I was invited to consider evidence that while in hospital, PL tried to remove a drip from her arm. Later, after her arrival at her nursing home, her PEG tube was found to have been removed in circumstances which could not be readily ascertained; it was put down to possible nursing error, but it is suggested that PL had tried to remove it, particularly given that on a subsequent occasion she was actually witnessed trying to undo the clamps on the tube. I cannot confidently conclude that these events represent clear evidence of a current wish to effect the withdrawal of her treatment; nor can I draw confident conclusions from the evidence of SL that on one occasion he found his mother staring at the ‘nil by mouth’ sign in her room and then looking at him as if to give him an indication that she wished to have her treatment withdrawn or discontinued. It may be that these actions reflect PL’s views; but it is not possible for me to find this as a fact.
43. PL’s past views represent an important feature of the case. Statute requires me to consider “as far as is reasonably ascertainable, P's 'past and present wishes and feelings'”, and the “beliefs and values that would be likely to influence [her] decision if [she] had capacity” (section 4(6)(a)). Taking PL’s views into account, particularly as they have been forcibly and repeatedly expressed, is a very significant aspect of making a decision in her best interests: see also in this regard the Mental Capacity Act Code of Practice at §5.32 / §5.38 / and especially §5.41.
44. Charles J attached particular importance to this feature in Briggs (No.2). In his ‘Overview’ at §7, he described it as the “weightiest and so determinative factor in determining what is in Mr Briggs' best interests”, and that the discontinuance of the CANH in that case “is what I am sure he would have wanted to do and would have concluded was in his best interests”. Miss Scott, drawing parallels with the Briggs case, describes this as the factor with ‘magnetic importance’ in the instant case.
i) That PL was clear that she would not want to be kept alive artificially in the event that she suffered a major stroke;
ii) While she may not have contemplated specifically that artificial life support would mean, in her case, CANH, her view remains clear and applicable to the current circumstances;
iii) That if PL could make the decision now, she would not give her consent to continuing the CANH treatment;
iv) That she would regard her current life as having no, or no real, value;
v) That this factor should carry, at least, very considerable weight.
(iii) (b) Quality of her life at present; enjoyment and distress:
46. PL occasionally smiles when she sees someone or something familiar, and/or when she is told something which resonates or amuses her; recently PL’s husband showed her a documentary film on a subject which he believed would be of particular interest to her (Richmond Park), and she appeared to nod at it, possibly showing some interest in, and/or enjoyment of, it. On a few occasions, she has been taken into the garden of the care home; the evidence is equivocal about whether she derived any enjoyment from this. In late-May she appeared to find some pleasure in such a visit (“her eyes followed a butterfly going by, and she held out her hand to take an i-pad”), although the care manager thought that it was “impossible to tell” whether she had in fact benefitted from the visit. By contrast it was felt that PL had derived no benefit or enjoyment from the repeated outing to the garden with SL and Mrs. M in the last few weeks.
47. On occasion or occasions some months ago, the speech and language therapist believes she heard PL chuckle. That has not been heard by the family. ML felt that PL rarely smiles now. While at times she has been observed to be alert and responsive, at other times she has been shut down, with her eyes closed, and has withdrawn into herself. SL described how PL communicates expressively through her eyes: “she expresses a lot of emotion through her eyes”, and appears to respond to his news in this way.
48. In the early days of her placement at the residential care home, she displayed considerable distress – moaning, crying, and wailing. The care home manager described her as “crying all the time”. ML described how even now he finds her gently sobbing during his visits; he told me that “she would look as if to say: ‘why have you have not solved my problem?’”. SL too described her crying at times, notably during a visit in recent weeks – possibly in response to his news, it is hard to say.
49. There is no evidence that PL is currently in particular pain, or in physical distress. For many months, lorazepam was administered three times daily (via the PEG tube) in order to reduce discernible distress and anxiety; in the absence of evidence of distress, this has recently been discontinued.
(iii)(c) Prognosis if CANH continues
50. There is, I regret, a grim predictability about the future for PL if CANH continues. It is agreed that she cannot in all probability be rehabilitated to any better state of functioning, in any respect. There is a prospect that she will need to be re-admitted to hospital at some point for a replacement PEG, with the ordinary risks associated with hospital admission and modestly invasive treatment under sedation. There is minimal fluctuation in her condition, but realistically only a forecast of deterioration. Her poor swallowing ability puts her at high risk of aspiration or choking. She is vulnerable to bed sores, and because of her incontinence, her skin integrity must be carefully monitored.
51. Materially, she remains vulnerable to further stroke or infection, a prospect which Dr. McCluskie regarded as “high”. He opined, and I accept, that there is a real prospect of PL succumbing to urinary tract infection or upper respiratory tract infection, pneumonia or fulminating infection.
52. There is, in short, nothing on the horizon which indicates that PL could enjoy anything ‘worthwhile’ in her life, as that concept was discussed and understood in Aintree, and – significantly – as PL herself would understand it.
(iii)(d) Prognosis if CANH is discontinued
53. The inevitable consequence of discontinuance of CANH, is the acceleration of PL’s death. If CANH is to be discontinued, a palliative care package will be administered; it is proposed that this will be delivered at the Regional Hyper-Acute Rehabilitation Unit at Northwick Park Hospital, under the care of Professor Turner-Stokes. Although end of life care is ordinarily best provided in a local palliative care setting, the local options have been explored for PL’s particular situation without success. Northwick Park has considerable experience in managing end of life care for those with profound neurological disability. PL’s end of life would be managed according to the general framework set out in the Royal College of Physicians PDOC Guidance, and would of course be subject to constant review, with PL being administered sedation and analgesia as required.
(iii)(e) Discontinuance of nutrition but not hydration
56. The CCG had commissioned an opinion on the issues arising from the discontinuance or withdrawal of CANH in PL’s case from Dr. X, a consultant in palliative care. Dr. X had advised the CCG that she could not support the discontinuance of CANH on ethical grounds; she had, however, gone on strongly to advise that if there was to be a change in the life-sustaining regime at all, the nutrition could cease but the hydration should be allowed to continue. She felt that discontinuing nutrition would cause PL to starve, and cause “metabolic derangement and electrolyte abnormality”, but that discontinuing hydration would cause PL to die from ‘dehydration’. Overall, she felt that maintaining at least low levels of hydration would cause less distress to PL. She confirmed that if the withdrawal of CANH were to happen at all, it should be managed in a specialist setting.
58. Professor Turner-Stokes was, by contrast. clear that in the event that the court took the view that life-sustaining treatment (CANH) should be withdrawn, then both nutrition and hydration should be discontinued together, and not merely nutrition. In expressing this opinion, she referred to and relied on research from the Netherlands and from the USA to the effect that withdrawal of nutrition and hydration was not more distressing than nutrition alone, and could be accompanied by surprising levels of well-being. She emphasised that this was also the approach of the Royal College of Physicians, forming the principle which had underpinned the drafting of the PDOC Guidance. She described herself as “very clear” of the appropriateness of this approach, and rejected the views of the two other doctors who (on paper) had expressed the view that hydration alone should be allowed to continue. She rejected the view that the patient is more distressed if both nutrition and hydration are withdrawn together, and expressed confidence that this situation would be managed appropriately in her unit with the assistance of the palliative care team which operates alongside her.
(iii)(f) Views of the family
59. SL and ML have been diffident about expressing their own personal views on this difficult issue. SL has made the application because he and the family are convinced that this would be PL’s wish; I fully accept how “hugely distressing” and “very emotional” it has been for him, as a loving son, to make the application, and that he was only doing so because he knew: “how strongly my mum held her view about living the way she is now and what she would want”. I emphasise that the close family, some of whom have been in court during the hearing, are united in the view that continuing the CANH is not in PL’s best interests, and that it should be withdrawn, with the inevitable consequence that she will soon thereafter die. I was struck by SL’s comments as follows:
“At the moment Mum’s life is what she would consider to be her absolute worst nightmare. It is the last way she would want to live and spend the end of her life – physically not able to do anything, and not able to speak. She will be finding it very frustrating and difficult. I believe she feels imprisoned in her room and it must be horrific for her given her personality and how she lived her life.”
“[PL] needs to be allowed to pass away peacefully, and to end her suffering, and it would be a great release to me and the rest of the family. She faces several years of being on the PEG, and I cannot imagine what she would be thinking”.
61. The views of the family are important; as people “interested” in PL’s welfare, statute requires me to consider them: see section 4(7) MCA 2005. SL repeated from the witness box that PL would be “horrified” if she knew that this is what had become of her, and that this court process had been necessary to resolve a question on which she has such a clear view.
“Anyone would wish the end of life to be as dignified as possible. In my judgment, however, there is dignity in the life of a disabled person who is being well cared for and being kept as comfortable and as free from pain as possible, and being provided with the maximum opportunity to extend their enjoyment of life that their disability allows”.
63. I am satisfied that objectively viewed, PL currently enjoys reasonable relative dignity in the privacy of her room at the care home; she is well cared for. Her situation is the best available, it seems to me, given her current circumstances. However, PL was a woman who, according to her family, cared about her appearance and her personal care and hygiene; she was a “proper” (in the sense of modest, genteel) person. PL valued her independence.
64. SL felt that PL would be distressed, embarrassed and “humiliated” by her current physical and mental state – her total reliance on third party care (often involving two carers), her double incontinence, her poor swallowing ability causing her to drool, her lack of any effective speech, and for someone with sporting ability throughout her life, her extremely limited physical movement. Mrs. M, her sister, observed that she believed that PL’s occasional distress was provoked by her awareness that people she knows, and of whom she is fond, are seeing her in her current undignified (as she would perceive it) state.
(iii)(h) Sanctity of life
66. There is a very strong but not absolute presumption that it is in the best interests of a person to stay alive – “a profound respect for the sanctity of human life is embedded in our law and our moral philosophy” (Airedale NHS Trust v Bland  AC 789 at 808 (“Bland”), and see also Munby J as he then was in R(Burke) v GMC (OS Intervening)  QB 424 at 213(o)). Baker J in Re M referred to the sanctity of life as being of “the most profound importance”, carrying “very great weight” in any balancing exercise, and on the facts of that case it was indeed “decisive” (§249).
67. The Code of Practice at §5.31 makes clear that “all reasonable steps which are in the person’s best interests should be taken to prolong their life”, and that there will only be “a limited number of cases” where that should be displaced. I recognise that it is only in reasonably exceptional circumstances that the best interests of the patient will justify the discontinuance of life-sustaining treatment. I do not think that it is right to import a strict test of ‘exceptionality’ as such, for as I earlier stated, each case will turn on its own facts.
68. One of the considerations which is directly relevant to the sanctity of life and the weight to be attached to this in the overall analysis is what PL would have thought of this issue herself in these circumstances. As Lord Goff in Bland said at 863:
“First, it is established that the principle of self-determination requires that respect must be given to the wishes of the patient, so that if an adult patient of sound mind refuses, however unreasonably, to consent to treatment or care by which his life would or might be prolonged, the doctors responsible for his care must give effect to his wishes, even though they do not consider it to be in his best interests to do so: see Schloendorff v. Society of New York Hospital (1914) 105 N.E. 92, 93, per Cardozo J.; S. v. McC. (orse S.) and M. (D.S. Intervener); W. v. W.  A.C. 24, 43, per Lord Reid; and Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital  AC 871, 882, per Lord Scarman. To this extent, the principle of the sanctity of human life must yield to the principle of self-determination (see ante, pp. 826H–827A, per Hoffmann L.J.), …. On this basis, it has been held that a patient of sound mind may, if properly informed, require that life support should be discontinued: see Nancy B. v. Hôtel-Dieu de Québec (1992) 86 D.L.R. (4th) 385. Moreover, the same principle applies where the patient's refusal to give his consent has been expressed at an earlier date, before he became unconscious or otherwise incapable of communicating it; though in such circumstances especial care may be necessary to ensure that the prior refusal of consent is still properly to be regarded as applicable in the circumstances which have subsequently occurred: see, e.g., In re T. (Adult: Refusal of Treatment)  Fam 95”. (emphasis by underlining added)
“the most significant impact of these provisions [sections 24-26 MCA 2005] is that they illustrate that the presumption of life, predicated on what is often referred to as the 'sanctity of life' or the 'intrinsic value of life', can be rebutted (pursuant to statute) on the basis of a competent adult's cogently expressed wish. It follows, to my mind, by parity of analysis, that the importance of the wishes and feelings of an incapacitated adult, communicated to the court via family or friends but with similar cogency and authenticity, are to be afforded no less significance than those of the capacitous”. (emphasis by underlining added)
This point was forcibly repeated in the judgment of Charles J in Briggs (No.2); I particularly draw attention to his ‘Overview’ at §11, and then the ‘reasoning’ at §62:
“… when the magnetic factors engage the fundamental and intensely personal competing principles of the sanctity of life and of self-determination which an individual with capacity can lawfully resolve and determine by giving or refusing consent to available treatment regimes: i) the decision maker and so a judge must be wary of giving weight to what he thinks is prudent or what he would want for himself or his family, or what he thinks most people would or should want, and ii) if the decision that P would have made, and so their wishes on such an intensely personal issue can be ascertained with sufficient certainty it should generally prevail over the very strong presumption in favour of preserving life.” (emphasis by underlining added)
The best interests’ decision
70. In making this crucial decision I have maintained focus on the distinct and individual facts of PL’s situation, and have rigorously applied the statutory criterion of ‘best interests’. I have come to know PL, through the evidence, as an “individual, with [her] own values, likes and dislikes” (Aintree §26), and I have sought to reflect in my ultimate decision what I believe to be in her best interests “in a holistic way”.
“… 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” (Aintree §39)
72. This passage reinforces the essentially limited value in considering previous case law otherwise than for general statements of principle or guidance. In any event, it is clear that the authorities to which I have been referred have concerned adults in MCS or VS. Adhering to the only authentic principle in cases of this kind – that the decision is taken in the best interests of P – ensures, so far as judicial ability and expertise permits, the right outcome.
73. I have had regard to, and have weighed, the various factors which I have outlined above. Most powerful of the factors which support the continuance of treatment is the presumption that it is in the best interests of a person to stay alive – a view which blends the essential tenets of morality, law and philosophy. But that concept must not be solely weighed in the abstract, it should be given the weight which PL herself would attach to it in her current circumstances. From all that I know about her character, her altruism, her faith, her ‘properness’ and her own personal fulfilment, I strongly suspect that PL would ordinarily attach great significance to the sanctity of life. But I also know that PL does not regard life as so sacred that she would want it to be preserved at all costs; over several years, and repeatedly, she made it clear to her family, I accept, that if she were in the situation in which she now tragically finds herself, she would wish such life to end. PL had, I am satisfied, a rich and satisfying life, and for her, that is what gave life its meaning.
74. Doing the best I can to interpret the range of evidence I have heard about her functioning, given the limits of her ability to communicate or communicate reliably, I am satisfied that PL finds little enjoyment or satisfaction in her current life. There is minimal evidence of any sense of pleasure or fulfilment in her life; her apparently positive responses to some stimuli (i.e. visitors, trips to the garden, the sight of something familiar) are so inconsistent as to be unreliable indicators of an appreciation of the world around her, or – in more general sense – a quality of life.
75. I bear in mind the likely futility in seeking to achieve any greater degree of rehabilitation for PL; the moment at which improvement in any domain of her functioning could be expected has almost certainly passed, and probably some months ago. It is revealing that (as I mentioned above §31) even if she were to make any improvement in her condition, her ‘best case scenario’ would be less good than that forecast for Mr. Briggs. I weigh in the balance that a life which continues to depend on CANH is likely to involve at least minor complications for PL (i.e. further hospital admission for replacement PEG under sedation, bed sores, risk of aspiration, skin infections) and is likely to end by PL suffering a further stroke, developing pneumonia or a fulminating illness; she is very ‘frail’ as it is. The palliative care plan to follow the discontinuance of CANH has, in my judgment, been carefully thought through, and appears to me to afford PL the dignity for which she would crave, and a passing which involves the minimum of distress. If life-sustaining treatment is to be withdrawn, I am satisfied, having heard Professor Turner-Stokes’ evidence, that both nutrition and hydration should be discontinued.
76. I am conscious that in making the decision in relation to PL, I must not apply substituted judgment, even though there is a “strong element” of substituted judgment in the best interests’ test. The Supreme Court in Aintree emphasised that while the court can, indeed should, accept that the preferences of the person concerned are an important component in deciding where her best interests lie, it is still a "best interests" test; see §24 of Aintree. As indicated above, Charles J in Briggs No.2 attached particular, even decisive, importance to the views of P, making the powerful point that someone with capacity could, through advance decision, displace the ordinary expectation of treatment in order to preserve life. This followed Lord Goff’s comments in Bland to which I have also referred (§68 above: “a patient of sound mind may, if properly informed, require that life support should be discontinued”). On these facts, as I have made clear, I am satisfied that PL made her views about life-sustaining treatment well-known to her family and friends; I have accepted their evidence, and further accept that her views apply to her current situation. Had PL’s views been specific to the provision of CANH, I would probably have regarded them as decisive of this application; as it is, her views weigh heavily in the balance.
77. I have weighed carefully the views of the family, to the extent that they wish me to do what they regard as the right thing, namely to authorise the discontinuance of treatment, not for themselves, but for PL.
78. So, I return to the fundamental question whether it is in PL’s best interests to continue to receive CANH. I have reviewed and considered PL’s welfare in the widest sense, and on balance I have concluded that it is not in her best interests; it follows that the discontinuance of the CANH treatment is therefore lawful.
Deprivation of liberty: Northwick Park
79. I turn briefly to consider PL’s move to Northwick Park and specifically the issue of her liberty once there. My provisional view is that no deprivation of liberty authorisation will be required in the circumstances which will then obtain: she will be in a state of very low cognition and possibly consciousness, receiving palliative care, as her life ebbs away. Professor Turner-Stokes described a process wherein she is placed in a coma-like state to anaesthetise her from any distress associated with the discontinuance of treatment. In this context, it seems to me that the answer lies in the judgment of the Court of Appeal in Ferreira v HM Senior Coroner for Inner South London and Others  EWCA Civ 31, noting what Arden LJ said at §99:
“In the case of a patient in intensive care, the true cause of their not being free to leave is their underlying illness, which was the reason why they were taken into intensive care. The person may have been rendered unresponsive by reason of treatment they have received, such as sedation, but, while that treatment is an immediate cause, it is not the real cause. The real cause is their illness, a matter for which (in the absent of special circumstances) the state is not responsible.”
This was a point which was accepted and developed in Director of Legal Casework & Others v Briggs by King LJ at §106:
“Ferreira confirms what I myself would regard as an obvious point, namely that the question of deprivation of liberty does not arise where a person who lacks capacity is so unwell that they are at risk of dying if they were anywhere other than in hospital and therefore, by virtue of their physical condition, they are unable to leave the hospital.”
80. For the avoidance of doubt, and for the reasons briefly explained in the paragraphs above, I do not consider that there will be a need for the hospital to request a standard authorisation under section 4A(5) and Schedule A1 MCA 2005 from the supervisory body.
Publication of judgment
81. I am satisfied that this judgment ought to be published given the fundamental importance of the issues which it discusses. It should be published in a form which protects the anonymity of PL and her family for at least three months after her death; I will give SL permission to extend that anonymity order, on notice to the press, no less than two weeks before the order is due to expire. In any event, I propose to direct that its publication – and indeed any reporting of the outcome of the case – should be deferred until 21 days following PL’s death.
83. On 27 September 2017, PL was moved from her nursing home to Northwick Park Hospital, under the care of Professor Turner-Stokes. On 29 September, CANH was withdrawn, and she died peacefully on 9 October 2017.
 See Lord Goff in Airedale NHS Trust v Bland  AC 789 at p.870A: “There is overwhelming evidence that, in the medical profession, artificial feeding is regarded as a form of medical treatment; and even if it is not strictly medical treatment, it must form part of the medical care of the patient. Indeed, the function of artificial feeding in the case of Anthony, by means of a nasogastric tube, is to provide a form of life support analogous to that provided by a ventilator which artificially breathes air in and out of the lungs of a patient incapable of breathing normally, thereby enabling oxygen to reach the bloodstream”.
 Area of dead tissue resulting from failure of blood supply.
 Cerebral Vascular Accident (stroke)
 Prolonged Disorder of Consciousness
 Caused by damage to parts of the brain responsible for understanding and using language
 “The person may have held strong views in the past which could have a bearing on the decision now to be made. All reasonable efforts must be made to find out whether the person has expressed views in the past that will shape the decision to be made. This could have been through verbal communication, writing, behaviour or habits, or recorded in any other way (for example, home videos or audiotapes)” Code of Practice §5.41.
 The principles set out in the palliative care regimen in the guidelines are not specific to PDOC patients.
 See Postscript at §83 below.