RAO v ROO & Anor [2018] EWCOP 33

[2018] EWCOP 33Case No COP1176529
COURT OF PROTECTION
Venue Royal Courts of Justice, Strand, London, WC2A 2LLDate 25/10/2018
Before
MR JUSTICE WILLIAMS
Between
RAOApplicantROO1 st RespondentROYAL DEVON AND EXETER NHS FOUNDATION TRUST2 nd Respondent
RAO represented himselfNicola Greaney (instructed by The Official Solicitor) for 1st RespondentFiona Paterson instructed by the 2nd RespondentHearing Hearing date: 25th October 2018
Judgment ApprovedThis judgment was delivered in public. 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.Mr Justice Williams :Introduction
[1]On 25 October 2018 I heard an application made by RAO, the husband of ROO who sought orders pursuant to the Mental Capacity Act 2005. At the conclusion of the hearing I gave my decision on the application together with short reasons with the intention of providing a full judgment thereafter. This is that judgment.[2]The application which was issued on 25 September 2018 sought the following orders:a. That it is not in ROO’s best interests to be discharged from hospital in her present condition.b. That it is in ROO’s best interests for her to be taken off palliative care until there has been a full investigation and definitive diagnosis of the cause of her deterioration since 2012.c. That ROO be given artificial feeding by way of PNT nutrition until she can eat enough to keep her alive.[3]RAO was unrepresented. He told me that he was unable to afford legal representation and towards the end of the hearing told me that applications to the Bar Pro Bono Unit and by a solicitor for legal aid had not borne fruit. ROO, the first respondent, was represented by her litigation friend the Official Solicitor who instructed Nicola Greaney, counsel. The Royal Devon and Exeter NHS Foundation Trust, the second respondent, was represented by Fiona Paterson.

Background

[4]ROO, who is now 61 years of age and ROA started living with each other in 1975, married in 1982 and bought a house together in 1983. They have three sons. In July 2008, ROO suffered a grade 5 subarachnoid haemorrhage - a stroke - with accompanying hydrocephalus which had a devastating impact on her life and on the lives of those close to her. An operation was carried out to place a ventriculo-peritoneal shunt.[5]As far as I can tell, ROO has not returned home since because the impact of the haemorrhage meant she required nursing care in a home. In particular she suffered from severely impaired function in her lower limbs but also in her upper body and upper limbs. Cognitively, she was severely impaired in particular suffering from receptive and expressive dysphasia. She suffered occasional grand mal seizures. From early 2009 until January 2018, ROO lived at Burdon Grange nursing home. Whilst there, although reliant on 24-hour nursing care and at risk of seizures, she was able to propel herself around in her wheelchair and appeared content. ROA believes that although her ability to communicate was impaired, he considered that her underlying intelligence and wit were not.[6]In 2012 ROO’s condition deteriorated. At the root of this application is a dispute over whether the cause of that deterioration has been adequately investigated. ROA identifies low cerebro-spinal fluid (CSF) pressure as being central to her condition, that arising out of the fact that on 30 January 2014 a lumbar puncture was carried out at the request of Mr Pople a consultant neurosurgeon, but no CSF was obtained. ROA believes that the cause of this has not been adequately investigated since. I shall return to what has occurred later.[7]In January 2018 ROO moved to live in Hatherleigh nursing home. Although there had been some issues with ROO’s weight and feeding whilst at Burdon Grange, she had in general remained well in terms of her weight and nutrition. In January 2018 her weight was recorded as 61kg. Following the move RO’s health declined and she became increasingly resistant to care and regularly refused fluids, food and medication.[8]On 19 May 2018 she was admitted to hospital after her weight had fallen to 48kg. A diagnosis was made during this admission of post stroke dementia. Although during her admission she gained 3kg in weight there was no observed improvement in her physical or cognitive functioning and the multidisciplinary team concluded that her weight loss was a consequence of her dementia and that she could meet her nutritional needs orally with support and encouragement. She was discharged back to Hatherleigh on 1 August 2018, her weight then being 48kg.[9]On 12 August 2018 she was readmitted to hospital with severe pneumonia and linked kidney infection and sepsis. Treatment with antibiotics, intravenous fluids and oral nutrition saw her through the crisis. Her weight had reduced to 44kg by 29 August. A Naso-gastric tube was put in place to assist with nutrition which ROO tolerated for four days before she pulled it out. On 4 September, a further attempt to insert a nasogastric tube was unsuccessful because ROO became agitated and resisted its insertion. She continued to accept food and drink on occasions orally. On 1 September she had a further episode of pneumonia.[10]On 29 September ROO suffered a prolonged epileptic seizure which lasted for more than two hours which required high levels of medication to bring under control. On 6 October 2018 her weight was recorded at 40.5kg.[11]It was thus shortly before this that on 25 September ROA issued his application in the Court of Protection. His application says:
“I am asking the court for emergency orders because ROO is in danger of dying any day from malnutrition. Artificial nutrition was withdrawn on 7 September and ROO put on palliative care…Dr Warren wrote ‘ROO is now at the end of her life. We need to discuss how she can be best looked after in the last few days or weeks.’ The decision of Dr Warren 7th September was made without consultation and agreement of ROO’s husband or three sons, a best interests meeting or an application to the COP; I have repeatedly reminded them of this and made my disagreement with the decisions known to the consultants as have ROO’s three sons. ROO should not be on palliative care as there has not been a full investigation and definitive diagnosis of the cause of ROO’s severe deterioration since 2012…Royal Devon and Exeter…are now bringing her food, but this is a token gesture as she is too weak and tired from lack of nutrition to eat enough to live so will soon die of malnutrition without artificial feeding by TNP which they are refusing to give her, although it would bring her strength up so she can eat again…ROO has had no nutritional input for weeks and is now skin and bone, she will be dead from malnutrition very soon without TPN…As her condition is now so poor she may get another infection but Dr Brooke said that if she does they will let her die rather than treated with antibiotics. ROO has been denied a lumbar puncture although there is no evidence that the situation has changed and there wouldn’t be the same result which was that CSF pressure was so low that none could be extracted.”

These proceedings

[12]The application first came before Mr Justice Hayden, the Vice President of the Court of Protection on 5 October 2018. On that occasion an interim declaration was made that ROO lacked capacity to litigate these proceedings or to make decisions about her ongoing care and treatment. An interim order was made that it was not in her best interests to receive artificial nutritional support. Permission was given to instruct an independent expert to report on her diagnosis, prognosis and best interests. The case was listed for an expedited final hearing with a time estimate of one day to include pre-reading and judgment. It is that final hearing that came before me. A transparency order was made which provided that the expedited final hearing be heard in public but subject to the usual reporting restrictions contained in a transparency order.[13]Prior to the commencement of the hearing I was provided with a core bundle and with ROO’s medical records. I was also provided with position statements on behalf of ROO and the NHS Trust together with a number of authorities.[14]ROA presented his case primarily through the medium of the witness statement which he had filed on 22 October 2018 together with the exhibits thereto. He asked questions of the treating clinicians and the expert and with some encouragement made short submissions. He made clear that he felt at a disadvantage in court as a result of not having legal representation and preferred to rely on his written case. He is clearly an intelligent and articulate man and he was able to identify important questions to put to the witnesses although I do not underestimate the extent to which he may have felt overawed both by the situation but also by the intensity of emotions which are engaged in this application.[15]Early in the hearing Ms Paterson on behalf of the NHS Trust invited me to consider going beyond the scope of the orders sought by ROA and to consider hearing evidence and making declarations as to what was in ROO’s best interests in terms of future treatment in particular identifying a ceiling of treatment or non-escalation and providing only for palliative care. She invited me to hear evidence from the treating clinician dealing with palliative care Dr Baines. Given that I was already due to hear from three medical witnesses and potentially ROA, and that no application seeking such declarations had been issued by the NHS Trust, I declined to go down that route having regard to the seriousness of the issues that were engaged in pursuing such a course and the lack of notice to ROA and the limited time available to the court.[16]In the course of the hearing I heard oral evidence from:a. Dr Antonia Brooke, the clinical lead in diabetes and endocrinology at the Royal Devon and Exeter Hospital,b. Dr Tim Harrower, consultant neurologist at the Royal Devon and Exeter Hospital (by telephone),c. Dr Richard Johnston, consultant gastroenterologist, the Trust’s independent expert.[17]I shall consider their oral evidence when I turn to my summary of the medical evidence.

The Parties’ Positions: a summary

[18]ROA’s position is set out in his witness statement attached to the original application and in his witness statement dated 22 October 2018. The latter is a detailed document which cross refers to a number of letters passing between ROA and various doctors or minutes of meetings. It seems to me that the essential points which he makes in that, which were supplemented in his oral submissions, are as follows.a. Following ROO’s deterioration in 2012, Mr Pople the neurosurgeon carried out a full investigation but found no other cause than low CSF pressure which he diagnosed on the basis of a lumbar puncture carried out on 30 January 2014 and he offered treatment for it.b. Mr Pople withdrew his offer of treatment as ROO’s sister objected to it. Since then ROA submits that ROO’s condition has continued to deteriorate and he had pressed Dr Harrower for further investigation which was thwarted due to his allegedly previous negligent treatment. This reference to previous negligent treatment appears to relate back to the period in 2008 and 2009 when ROO was given significant anti-epileptic medication which ROA describes as putting her into an apparent vegetative state.c. ROA does not accept that dementia is the correct diagnosis for ROO. He considers that while she has an impaired ability to communicate she has never lost her intelligence or wit. He submits that she is presently so weak from malnutrition that she hasn’t the energy to communicate although she had previously been able to by facial expression and gesture.d. He submits that the absence of any investigation as to her low CSF as demonstrated by the dry lumbar tap is a significant deficit in anyone’s ability to understand what is the cause of her current condition.e. He submits that as a result of her loss of weight, malnutrition and low BMI, these are adversely affecting the reliability of any neurological tests that have been done or could be done and that if her weight was increased by artificial nutrition that would then put her in a position when the cause of her low CSF pressure could be investigated.f. He also submits that the giving of artificial nutrition would of itself lead to an increase in her energy levels or ability to engage and would thus improve the quality of her life.g. He suggests that even if ROO did have dementia with neurological symptoms consistent with its onset that (of itself) would not justify failing to provide artificial nutrition.h. He therefore seeks a declaration that it is in ROO’s best interests that there be a full neurosurgical investigation and definitive diagnosis of the cause of her deterioration since 2012. In order to promote the investigation but also to prevent her dying of malnutrition and to build up her strength energy and weight he seeks a determination that it is in ROO’s best interest to receive intravenous nutrition. He submits that given she is currently receiving hydration through an intravenous drip that there would be no further procedure required in order to provide nutrition in this way and this would in any event then extend her life.i. Lastly, he submits that it would be in ROO’s best interests to be moved to North Devon District Hospital which is closer to where he and her sons live so that they could visit her several times a week in particular to support her eating. Her current placement limits their ability to see her.[19]The Official Solicitor’s position is set out in considerable detail in the 20 page position statement filed by Ms Greaney on his behalf. It seems to me that some of the essential points to be extracted from that and from the Official Solicitor’s submissions after the conclusion of the evidence are as follows:a. He is satisfied on the balance of probabilities that ROO lacks capacity to conduct these proceedings and to make decisions about her ongoing care and treatment including whether to be artificially fed by intravenous nutrition and whether to undergo further neurological investigations.b. The Official Solicitor is satisfied that ROO’s current neurological condition is appropriately diagnosed as severe progressive vascular dementia arising from principally the subarachnoid haemorrhage she suffered in 2008, together with the further ischaemic damage sustained in 2012 and both age-related and other damage sustained to the structure of the brain more recently.c. The Official Solicitor is therefore satisfied on the evidence that no further investigations of her neurological condition such as those argued for by ROA whether in the form of pressure testing or further lumbar punctures or otherwise are either required or justified.d. Given there is evidence that ROO does not welcome medical interventions at times, carrying out procedures such as lumbar puncture would involve unpleasant and unwelcome medical intervention with no benefit. It is implicit that more extensive investigations or treatment such as operative intervention as mooted by Mr Pople in 2014 are not in her best interests.e. A recognised aspect of dementia is weight loss. The provision of intravenous nutrition (parenteral or TPN) will have no effect on her underlying progressive dementia. The evidence shows that the provision of intravenous nutrition has no effect on life expectancy as compared to the provision of oral nutrition to patients with dementia. The evidence also establishes that the provision of additional nutrition if it is not accompanied by exercise and the build-up of muscle mass would not have any health benefits to ROO in terms of the functioning of her immune system or her vulnerability to organ failure in particular to heart attacks.f. The evidence establishes that there are risks associated with the provision of intravenous nutrition, in particular re-feeding syndrome and infections. The introduction of intravenous nutrition will result in significant medicalisation of ROO particularly in the first 10 days when daily blood testing would be necessary to monitor levels of electrolytes etc to deal with the risk of re-feeding syndrome. This would introduce complications in terms of the possibility of infections with highly medicalised intervention and the difficulties in ROO being transferred out of the acute ward to nursing care.g. In the absence of any identifiable benefit to ROO of intravenous nutrition as compared to persisting with oral nutrition in a more supportive environment and having regard to the potential complications and the more intrusive medical nature of intravenous nutrition the Official Solicitor considers that there is no benefit to ROO and it is not therefore in her best interests to undergo intravenous nutrition.h. The Official Solicitor notes that ROO has been recorded as saying on two occasions that she wishes to die but given the questions over her capacity he does not place much reliance on this. The Official Solicitor does place reliance on ROO’s resistance to various forms of medical intervention as an indication that she does not welcome intrusion. She pushes people’s hands away, pulls her bedclothes up over her face as a way of indicating that she does not want for instance a nasogastric tube inserted, or to be given medication, or to be given food.i. The Official Solicitor has spoken with members of ROO’s family. None of her sons could recall any discussions with ROO which shed any light on her attitude to end of life issues. Her youngest son characterised her as a fighter who wouldn’t want to give up. Her oldest son thought she was very strong and independent and true to herself and his view was that she did not want to die. Her middle son thought she had no strong beliefs or views about medical treatment or religion. ROO’s brother and sister both thought she would not want the sort of life she is currently living. Her sister in particular identified ROO as somebody who believed in a natural way of life and alternative medicine.[20]The NHS Trust’s position is set out in the position statement filed by Ms Paterson on behalf of the Trust. It is of course also articulated in the witness statements filed on behalf of the Trust in particular that of Dr Brooke, who is one of the four consultants who lead the team concerned with ROO’s care and has taken on the responsibility of giving evidence on behalf of the Trust. Much of the Trust’s position is mirrored in that taken by the Official Solicitor on behalf of ROO. The essential elements of their position are as follows:a. Capacity assessments carried out by Dr Tariq Ahmad, consultant gastroenterologist, Dr Baines palliative care consultant and Dr Mary Rowlands, consultant psychiatrist all conclude that ROO does not have capacity to make decisions as to her treatment or to conduct litigation.b. The view of the multi-disciplinary team treating ROO is that she is suffering from irreversible and progressive vascular dementia. It is their view that she is now in the final stages of her illness which could be a matter of weeks or months but more likely weeks. They do not consider that any further investigations are required to understand her current condition from a neurological perspective.c. As loss of appetite and loss of weight are a well-recognised feature of dementia, the provision of intravenous nutrition will do nothing to address the underlying condition. If it were provided and weight were gained and it were then withdrawn ROO would simply lose weight again. In any event any weight gained would not in fact bring any benefit to ROO as it would not reverse the loss of muscle mass which underlies the risk of organ failure and reduction in the function of the immune system. Because ROO cannot undertake physiotherapy she cannot regain muscle mass and thus weight gain would be of no benefit. ROO is currently still taking food orally sometimes exceeding the calorie count needed to maintain her weight but often taking substantially less than is needed. Currently her electrolyte and blood glucose levels are within normal parameters and so artificial nutrition is not required to address these issues which are linked to the risk of organ failure. There is thus no benefit to ROO but there are risks relating to infection and refeeding syndrome and it is likely that ROO would object to the treatment and the resultant higher level of medicalisation that would be involved.d. ROO is not currently being treated as if at the end of life in the sense of only being provided with palliative care. She is still being given antibiotics if necessary. In that sense palliative care that is spoken of should not be equated to end of life care.e. They do not support a transfer of ROO to the North Devon Hospital. Their position is that ROO does not need to be on an acute medical ward and there are benefits to her in not being on an acute medical ward with all of the medicalisation and exposure to hospital environment that that brings. They consider that she would be more comfortable and more receptive to her family and feeding in the environment of a nursing home. In any event the NHS Trust would not feel that the North Devon Hospital is the appropriate place to treat her if she does need to be an inpatient because her current hospital now have extensive experience of her and have the treating staff who are best placed to manage her and the family.

The Substantive Application: Legal Framework

[21]The Mental Capacity Act 2005 sets out the statutory scheme in respect of individuals aged over 16 who lack capacity. Section 15 gives the court the power to make declarations as to whether a person lacks capacity to make a specified decision and the lawfulness or otherwise of any act done or to be done in relation to that person. Section 16 gives the court the power to make an order and make the decision on a person’s behalf. Section 48 gives the court discretion to make an order on an interim basis and in particular if it is in the person’s best interests to make the order without delay.[22]The Mental Capacity Act 2005 deals with the jurisdiction of the court by implementing into domestic law the jurisdictional provisions contained in the 2000 Convention on the International Protection of Adults; s.63 MCA 2005 and Sch 3. Part 2 and in particular paragraphs 7(1)(a), (c) and (d). Thus the courts of England and Wales would have jurisdiction over a person habitually resident in England and Wales. ROO is habitually resident in England and Wales.[23]Section 2(1) of the Act provides that a person lacks capacity if, ‘at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain.’ It does not matter whether the impairment or disturbance is permanent or temporary. The determination of whether a person lacks capacity is to be made on the balance of probabilities. Section 3 sets out various criteria by which the court should determine whether a person is unable to make a decision.[24]Section 1 of the Act sets out the principles applicable under the Act. Sub-section (5) provides that ‘An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made in his best interests.[25]Section 4 of the Act deals with ‘Best interests’(1) In determining for the purposes of this Act what is in a person's best interests, the person making the determination must not make it merely on the basis of— (a) the person's age or appearance, or (b) a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about what might be in his best interests.(2) The person making the determination must consider all the relevant circumstances and, in particular, take the following steps.(3) He must consider— (a)whether it is likely that the person will at some time have capacity in relation to the matter in question, and (b)if it appears likely that he will, when that is likely to be.(4) He must, so far as reasonably practicable, permit and encourage the person to participate, or to improve his ability to participate, as fully as possible in any act done for him and any decision affecting him.(5) Where the determination relates to life-sustaining treatment he must not, in considering whether the treatment is in the best interests of the person concerned, be motivated by a desire to bring about his death.(6) He must consider, so far as is reasonably ascertainable— (a) the person's past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity), (b) the beliefs and values that would be likely to influence his decision if he had capacity, and (c) the other factors that he would be likely to consider if he were able to do so.(7) He must take into account, if it is practicable and appropriate to consult them, the views of— (a)anyone named by the person as someone to be consulted on the matter in question or on matters of that kind, (b) anyone engaged in caring for the person or interested in his welfare, (c) any donee of a lasting power of attorney granted by the person, and (d) any deputy appointed for the person by the court, as to what would be in the person's best interests and, in particular, as to the matters mentioned in subsection (6).(8) The duties imposed by subsections (1) to (7) also apply in relation to the exercise of any powers which— (a) are exercisable under a lasting power of attorney, or (b) are exercisable by a person under this Act where he reasonably believes that another person lacks capacity.(9) In the case of an act done, or a decision made, by a person other than the court, there is sufficient compliance with this section if (having complied with the requirements of subsections (1) to (7)) he reasonably believes that what he does or decides is in the best interests of the person concerned.(10) “Life-sustaining treatment” means treatment which in the view of a person providing health care for the person concerned is necessary to sustain life.(11) “Relevant circumstances” are those— (a) of which the person making the determination is aware, and (b) which it would be reasonable to regard as relevant.[26]The courts have emphasised in a variety of contexts that ‘best interests’ (or welfare) can be a very broad concept, as shown in:a. Re G (Education: Religious Upbringing) [2012] EWCA Civ 1233, 2013 1 FLR 677.b. Re A (A Child) [2016] EWCA Civ 759.c. An NHS Trust v MB & Anor [2006] EWHC 507 (Fam).d. Re G (TJ) [2010] EWHC 3005 (COP).e. Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67, [2014] AC 591.

Legal Principles on Best Interests

[27]Whether or not a person has the capacity to make decisions for herself, she is entitled to the protection of the European Convention on Human Rights. The fundamental principle of the sanctity of human life is enshrined in Article 2 of the Convention: everyone's right to life shall be protected by law. Further in the present context, Article 3 (protection from inhuman or degrading treatment) is relevant. In addition it is an aim of the UN Convention on the Rights of Persons with Disabilities to secure the full enjoyment of human rights by disabled people and to ensure they have full equality under the law. In cases such as Lambert-v-France (20160 62 EHRR 2) the European Court of Human Rights has confirmed that the withdrawal of life sustaining treatment engages a State’s positive obligations under Article 2 but that permitting withdrawal and the circumstances under which it was permitted and how the balance was struck between the right to life and the protection of their right to respect for their private life and autonomy were within the margin of appreciation of states. The ECHR retains a right to review whether in any particular case an individual’s Article 2 rights had been infringed or were within the margin of appreciation.[28]In Aintree University Hospital NHS Trust v James [2013] UKSC 67, the Supreme Court considered the first case to come before it under the MCA. Baroness Hale, giving the judgment of the court, stated at paragraph [22]:
‘[22] Hence the focus is on whether it is in the patient's best interests to give the treatment rather than whether it is in his best interests to withhold or withdraw it. If the treatment is not in his best interests, the court will not be able to give its consent on his behalf and it will follow that it will be lawful to withhold or withdraw it. Indeed, it will follow that it will not be lawful to give it. It also follows that (provided of course they have acted reasonably and without negligence) the clinical team will not be in breach of any duty toward the patient if they withhold or withdraw it.’ ‘[39] The most that can be said, therefore, is that in considering the best interests of this particular patient at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude towards the treatment is or would be likely to be; and they must consult others who are looking after him or are interested in his welfare, in particular for their view of what his attitude would be.’
[29]At [44-45] it is said that the purpose of the best interests test is to consider matters from the patient's point of view. Where a patient is suffering from an incurable disability, the question is whether she would regard her future life as worthwhile. As was made clear in Re J [1991] Fam 33, it is not for others to say that a life which a patient would regard as worthwhile is not worth living.[30]Where the patient’s condition may improve a best interests decision may be based on the ‘best case’ scenario.[31]Whilst the application of the law relating to giving, withholding or withdrawing medical treatment requires sensitivity and care, it is now clear and well-established. In Re A (A Child) 2016 EWCA 759, the Court of Appeal said: In considering the balancing exercise to be conducted: “‘1. The decision must be objective; not what the judge might make for him or herself, for themselves or a child; 2. Best interest considerations cannot be mathematically weighed and include all considerations, which include (non-exhaustively), medical, emotional, sensory (pleasure, pain and suffering) and instinctive (the human instinct to survive) considerations; 3. There is considerable weight or a strong presumption for the prolongation of life but it is not absolute; 4. … account must be taken of the pain and suffering and quality of life, and the pain and suffering involved in proposed treatment against a recognition that even very severely handicapped people find a quality of life rewarding. 5. Cases are all fact specific.”’[32]The weight to be attributed to P’s wishes and feelings will differ depending on such matters as how frequently they are expressed, how consistent the views are, the complexity of the decision and how close to the borderline of capacity the person is. (See [35] RM, ITW v Z [2009] EWHC 2525(COP) [2011] 1WLR 344). In Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67 the Supreme Court made it clear that the court below had been wrong to focus on what “the reasonable patient” would decide, and emphasised that the patient’s own wishes and feeling must be properly considered:
“The things which were important to him… should be taken into account because they are a component in making the choice which is right for him as an individual human being.”
[33]Several cases after Aintree have considered the weight to be placed on the wishes and feelings of an incapable adult in the best interests’ assessment. In M v N (by her litigation friend, the OS), Bury Clinical Commissioning Group [2015] EWCOP 9 Hayden J (paras. 28, 30): “…where the wishes, views and feelings of P can be ascertained with reasonable confidence, they are always to be afforded great respect. That said, they will rarely, if ever, be determinative of P’s ‘best interests’. Respecting individual autonomy does not always require P’s wishes to be afforded predominant weight. Sometimes it will be right to do so, sometimes it will not. The factors that fall to be considered in this intensely complex process are infinitely variable e.g. the nature of the contemplated treatment, how intrusive such treatment might be and crucially what the outcome of that treatment maybe for the individual patient. Into that complex matrix the appropriate weight to be given to P’s wishes will vary. What must be stressed is the obligation imposed by statute to inquire into these matters and for the decision maker fully to consider them. Finally, I would observe that an assessment of P’s wishes, views and attitudes are not to be confined within the narrow parameters of what P may have said. Strong feelings are often expressed non-verbally, sometimes in contradistinction to what is actually said. Evaluating the wider canvass may involve deriving an understanding of P’s views from what he may have done in the past in circumstances which may cast light on the strength of his views on the contemplated treatment. Mr Patel, counsel acting on behalf of M, has pointed to recent case law which he submits, and I agree, has emphasised the importance of giving proper weight to P’s wishes, feelings, beliefs and values see Wye Valley NHS Trust v B.[34]The Court must take account of paragraphs 5.31 – 5.35 of the Code of Practice when making decisions about life-sustaining treatment:
“5.29 A special factor in the checklist applies to decisions about treatment which is necessary to keep the person alive (‘life-sustaining treatment’) and this is set out in section 4(5) of the Act. The fundamental rule is that anyone who is deciding whether or not life-sustaining treatment is in the best interests of someone who lacks capacity to consent to or refuse such treatment must not be motivated by a desire to bring about the person’s death. 5.30 Whether a treatment is ‘life-sustaining’ depends not only on the type of treatment, but also on the particular circumstances in which it may be prescribed. For example, in some situations giving antibiotics may be life-sustaining, whereas in other circumstances antibiotics are used to treat a non-life- threatening condition. It is up to the doctor or healthcare professional providing treatment to assess whether the treatment is life-sustaining in each particular situation. 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. 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. 5.34 Where a person has made a written statement in advance that requests particular medical treatments, such as artificial nutrition and hydration (ANH), these requests should be taken into account by the treating doctor in the same way as requests made by a patient who has the capacity to make such decisions. Like anyone else involved in making this decision, the doctor must weigh written statements alongside all other relevant factors to decide whether it is in the best interests of the patient to provide or continue life-sustaining treatment. 5.35 If someone has made an advance decision to refuse life-sustaining treatment, specific rules apply. More information about these can be found in chapter 9 and in paragraph 5.45 below. 5.36 As mentioned in paragraph 5.33 above, 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.”
[35]Therefore, a host of matters must all go into the balance when the judge seeks to arrive at his objective assessment of whether this treatment is in this patient’s best interests. In particular I must consider the values and beliefs of ROO as well as any views she expressed when she had capacity that shed light on the likely choice she would make if she were able to and what she would have considered relevant or important. Where those views can be ascertained with sufficient certainty they should carry great weight and usually should be followed; as they would be for a person with capacity who did express such views.

Factual background and medical evidence

[36]The following section is extracted from the various documents which I have been provided with. They, of course, include the witness statements of ROA together with the exhibits, the witness statement of Dr Antonia Brooke, and her exhibits the witness statement of Dr Tariq Ahmad, the witness statement of David Edwards, and the second opinion of Dr Richard Johnston and the medical records.[37]On 25 July 2008, ROO suffered a severe (Grade V) spontaneous subarachnoid haemorrhage which was complicated by fluid on the brain (hydrocephalus) and she required the insertion of a ventriculoperitoneal shunt to drain excess fluid. The subarachnoid haemorrhage was principally on the left side of her brain and so affected her right-sided function to a greater extent. She was in hospital for 7 months and in a rehabilitation unit for a further 4 months before being discharged to Burdon Grange nursing home on 8 June 2009. Her physical condition improved between 2009 and 2012 and she was able to walk with the support of two nurses - ROA has produced photographs of her walking with support in 2011. She is recorded as being able to propel herself around in a wheelchair, was eating well and regained urinary continence. She required 24 hour nursing care and was prone to seizures. Her PEG tube was removed. The later MRI scans showed that blood from the haemorrhage had tracked down into the spine and had left scarring which Dr Harrower considered explained the significant lower limb disability that ROO experienced.[38]On 14 December 2012 ROO suffered a sudden deterioration in physical function with left arm and leg weakness. A CT brain scan on 15 December 2012 showed old infarcts in the left middle cerebral artery territory and right frontal region. A MRI scan on 17 December 2012 showed a possible new right middle cerebral artery infarct. Her physical health and cognitive function thereafter declined. By 2013, ROO was unable to stand, required hoisting out of bed and required assistance with all activities of daily living, including feeding, medication and personal care. Her language remained extremely limited. She started to decline food and medication and her weight began to fall.[39]In November 2017 District Judge Taylor determined that the best interests requirement was not met in respect of ROO’s residence at Burdon Grange, and that it would be in her best interests (as ROA had contended) to move to another nursing home, Hatherleigh. She did so on 17 January 2018. Her weight was 61kg on arrival.[40]ROO’s health declined more rapidly following the move and she became increasingly resistant to care and regularly refused fluids, food and medication. On 19 May 2018, she was admitted to the Hospital after her weight had fallen to 48kg. During this hospital admission, ROO was diagnosed with post-stroke dementia. She underwent psychiatric review but no depressive illness was diagnosed, although she was administered anti-depressant and appetite stimulation medication as a trial but no benefit was observed. No evidence of any underlying malignancy was found on whole body CT scan on 12 July 2018. Her malnutrition was considered to be a consequence of her dementia. During this stay she gained 3kg weight but no improvement in her level of functioning or engagement was observed.[41]A best interests meeting, led by Dr Hinton, was held on 1 June 2018. It was considered that ROO’s weight loss was in keeping with her diagnosis of dementia. The MDT (multi-disciplinary team) felt that she could safely meet her nutritional requirements orally with support and encouragement. A 3 month trial of oral nutrition was recommended. Artificial nutrition in the form of a NG tube or PEG tube feeding was discussed. There is a dispute as to what ROA’s position was at this meeting. RAO was recorded as stating that ROO would hate an NG tube or PEG tube but he disputes this. I do not think I am assisted in the determination of this case by needing to resolve that disagreement. The MDT concluded that artificial nutrition is not what she would wish.[42]ROO was discharged back to Hatherleigh nursing home on 1 August 2018. Her weight was 48kg. She then frequently declined to eat or drink. On 12 August 2018 she was re-admitted to the Hospital with severe pneumonia and kidney failure and sepsis linked to the pneumonia. She was unresponsive and not expected to survive. She was treated with intravenous fluids and antibiotics and assisted with oral nutrition in the form of normal fluids and a thick pureed diet. She had a further episode of pneumonia on 1 September 2018.[43]Her weight was 44kg on 29 August. She pulled out two naso-gastric tubes that were inserted in late August/early September. On 4 September, a further attempt to insert a NG tube was unsuccessful because ROO became agitated and was moving her head from side to side, sticking out her tongue and waving her hands in the face of approaching health professionals. On 29 September 2013, she suffered a prolonged tonic-clonic seizure lasting for more than 2 hours which may have led to further cognitive decline.

The Neurological Evidence

[44]In January 2014, ROO was admitted to the Hospital to undergo a lumbar puncture. This procedure was recommended by Mr Ian Pople, consultant neurosurgeon at the Southmead Hospital, Bristol. Mr Pople expressed the view, having viewed a MRI scan from October 2013, that it was possible that her ventricles had become slightly larger compared to a MRI scan in 2008 and that the shunt was not adequately draining fluid. However, Dr Harrower, consultant neurologist, at the Hospital reported to Mr Pople that despite trying it was not possible to secure any sample of CSF (cerebrospinal fluid). Dr Harrower remarked, “I am wondering whether that might be information in itself, indicating that possibly the shunt is working effectively.” Mr Pople advised on 14 August 2014 that he did not consider it appropriate to pursue the lumbar puncture saying, “I do not think it is appropriate to pursue the lumbar puncture and agree with a more conservative approach.” I’m not sure what ROO’s weight was at this time but it does not appear to have been suggested that malnutrition played any part in the dry lumbar puncture result.[45]Notwithstanding this on 20 August 2014, Mr Pople wrote a letter to ROO’s GP in which he stated:
“Radiology suggests that ROO is probably now managing without the need for a shunt, but we cannot completely exclude the possibility of there being shunt malfunction. I will be prepared to admit ROO for insertion of a ventricular reservoir to access the ventricles and at the same time probably to put in a new ventricular catheter to ensure that her shunt is working fully.”
. He said that this is the only therapeutic manoeuvre that he could offer from a neurosurgical point of view but the chance of success in terms of improving her neurological condition is probably in the region of less than 50%, with potential risks and complications such as bleeding, infection and deep vein thrombosis in the order of 10% which could cause a significant deterioration in her condition. He invited the GP to discuss with ROA whether she should go through those procedures. “The question is whether or not you and ROA feel that she should go through these invasive procedures to give her a chance of improving, accepting that there could be a significant deterioration in her condition if she develops complications from the surgery…It would involve a new burr hole in the right frontal region to insert the reservoir and re-opening of the wound on the right side of the head to replace the ventricular catheter. My estimate at the risk of surgery would be about 10% risk of surgical complication, causing a worsening in her condition…”[46]In a letter dated 23 April 2015, Mr Pople wrote to Mr Toby Kippax, a solicitor representing Devon County Council. Mr Pople stated:
“Having carefully considered all the medical issues and feedback from all her family and medical carers, it is my opinion that ROO should not be subjected to a shunt revision at this stage. I am not prepared to put her through the risks of surgery without clear evidence of a significant reduction in conscious level or substantial enlargement of her ventricular system on her scans. I would be happy to reconsider this decision in the future should there be a major change in her condition but at the moment I am not now convinced that it is in ROO’s best interest to undergo shunt revision.”
[47]By March 2017, Dr Harrower was acknowledging that the dry lumbar puncture suggested over drainage of the shunt, and by August was suggesting that ROA obtained a further opinion from Mr Pople as to whether any investigations might be required to take things further forward. At that stage he referred to a CT scan which had been seen by Peter Whitfield and he was going to ask Mr Pople to look at the scan to give an opinion on whether there was any scope for pressure monitoring to answer the question definitively as to whether there is over drainage. There is not as far as I can see a response from Mr Pople.[48]Mr Peter Whitfield, consultant neurosurgeon and associate professor in neurosurgery at Plymouth Hospitals NHS Trust was asked to give a second opinion by Dr Harrower from the Trust in 2017. His observations on the most recent CT scan (precise date unclear) were:
“The most recent scan shows quite a significant degree of cerebral atrophy since that time [2009]. This is commonly seen in patients with severe subarachnoid haemorrhage very much as it is also seen in trauma. The areas of low attenuation are more prominent and the brain itself is more atrophic. The ventricles remain around normal size. There is not an appearance of over-drainage of CSF. With regards to management, I would strongly advise against removal of the shunt system. In a subarachnoid haemorrhage of this severity, which was also associated with intra-ventricular haemorrhage, hydrocephalus is a common sequelae. The likelihood of any CSF over-drainage occurring is very small. The likelihood of any CSF over-drainage contributing significantly to disability is remote.”
[49]Mr Whitfield concurred with Dr Harrower that “her poor clinical condition is most likely to be due to a severe primary subarachnoid haemorrhage.” Mr Whitfield provided an updated opinion in May 2018. Having ordered a CT scan Professor Whitfield concluded that the shunt when examined was functioning normally and that her scans over a period of several years including one in May 2018 did not show any signs of CSF over drainage. He said that the ventricles were of very reasonable size and do not show signs of under drainage. “I do not think that CSF disturbance (shunt malfunction) accounts for her clinical picture of neurological deterioration. I think the most likely explanation is that she has impaired neuronal plasticity as a result of her subarachnoid haemorrhage which coupled with the effects of age-related change have caused a deterioration in neurological function…I do not think there is any value in undertaking any operations on her shunt or any lumbar punctures.”[50]Following communication from ROA, Professor Whitfield wrote again in September 2018 that he had reviewed the MRI scan of the brain and whole spine. He said that the ventricles do not have the appearance of CSF over drainage and there was no evidence of any subdural collections that would be consistent with CSF over drainage. He thought the shunt was functioning satisfactorily. He said that he could not explain the dry CSF tap and did not think that any revision of her shunt or tying it off would result in clinical benefit and would place her at high risk of complications from infection and related to the anaesthetic. He could not offer any solutions to try and promote improvements in her clinical status.[51]Both Dr Brooke and Dr Harrower gave further evidence on the issue of ROO’s neurological condition in their oral evidence. The following are the essential elements.a. The general picture since 2008 is an overall decline in her neurological functioning. This manifests itself both in a decline in her physical functioning (and since she is now unable to sit up) but also in her cognitive functioning. Prior to 2012 it was mainly right sided weakness but since the further stroke in 2012 she has also had left-sided weakness.b. The picture which emerges from the imaging which has been done over the years shows damage to the brain from the original subarachnoid haemorrhage together with further damage in 2012. Now there appears to be small vessel ischaemic damage which shows itself as white spots on the imaging.c. The imaging clearly shows a reduction in the brain mass which appears as a largening of the ventricles. This is not caused by a build-up of fluid (hydrocephalus) in the ventricles but rather is the brain itself diminishing in size. The build-up of fluid would cause pressure in the head and affect neurological function but that is not what the imaging shows. The ventricles are particularly large on the side of the subarachnoid haemorrhage where the neurons are dying back and have created space. If this were hydrocephalus then the architecture on the other side of the brain would also be affected. If the shunt were over draining the imaging may show the brain shrinking away from the skull or sinking down and radiologically there is no evidence of this.d. The imaging shows evidence of small vessel ischaemia which can occur when the brain is starved of oxygen in a seizure. The evidence of the scans show serious insult to the brain from subarachnoid haemorrhage, hydrocephalus and small vessel ischaemia. That explains her condition neurologically.e. The MRI scans show scarring in the spinal-cord which might explain why the lumbar puncture in 2014 did not produce any CSF. The MRI scans provide a good explanation for the lack of function in her lower limbs. Although ROA says the MRI scans of the lumbar spine are not clear they are sufficiently clear to identify significant damage in that area which explains her lower limb functioning.f. There is no other investigation that could or should be done. Other potential causes of neurological injury such as low-sodium have been excluded. CT scans showed no other malignancy.g. ROO meets the clinical criteria for dementia although one should be clear this is not Alzheimer’s, it arises from the damage to the brain caused by the haemorrhage and by the subsequent ischaemic damage. One third of patients who suffer a stroke experience post stroke dementia. Her general decline in physical and cognitive ability and the imaging both support this diagnosis. It is likely that her brain has suffered further damage as a result of the very serious infection and its consequences in August 2018 and the prolonged two hour epileptic seizure in September 2018. Both contribute to a reduction in the functioning of the brain. The general progression of vascular dementia is a decline in abilities. This often is not a steady decline but a decline in steps. The severe illness in August and the epileptic seizure have reduced her abilities and she is unable to recover a previous level of ability. For instance her swallow is deteriorating although she is still able to but the risk of aspirating food into her lungs is increasing.h. She is now more vulnerable to chest infections because she is breathing less strongly and her cough is becoming poorer although her gag reflex still exists.i. The current BMI puts her at risk of cardiac arrest because her muscle mass is reducing. However the converse is not true. Increasing her BMI does not lead to a reduction in risk unless the increase in BMI is linked to an increase in muscle mass which will not occur because she cannot undertake physiotherapy of any sort to regain muscle mass. Her current weight is 39kg.

Capacity

[52]Dr Ahmad carried out a capacity assessment of ROO on 5 September 2018 and concluded that she lacked capacity to make complex decisions or to communicate these decisions. Limited information is available but he appears to have conducted this assessment with specific reference to her ability to make decisions about medical treatment for her conditions including whether to have artificial nutritional support. Dr Rowlands, consultant locum psychiatrist, carried out a psychiatric assessment of ROO on 8 October 2018. Whilst she did not specifically assess capacity, she stated that ROO’s presentation was in keeping with progressive cognitive decline and physical frailty secondary to vascular dementia on a background of previous subarachnoid haemorrhage and ischaemic events. She found no evidence to question the current medical opinion that she lacks capacity to make treatment decisions.

Artificial nutrition

[53]Dr Johnston the independent second opinion in gastroenterology provided a detailed report. He also attended to give evidence. In particular he said that his report was based on the assumption that the diagnosis of severe progressive dementia was accurate. He said that whilst neurology is not his area of expertise he deals with patients with dementia on a very regular basis and that in his view her presentation was consistent with dementia. He examined her on 5 October. The salient points in his evidence are as follows:a. ROO currently meets the diagnostic criteria for malnutrition with a body mass index below 18.5kg/m². Her current BMI is around 13. She has severely depleted muscle and adipose reserves which mean her immune system will have limited ability to deal with infections and she is at high risk for sudden death or organ failure.b. Her malnutrition is a result of chronically inadequate oral intake of nutrition driven by her advanced dementia. The clinical records show that she may be consuming between 200 and 1400 cal per day. She needs a minimum of 1200 to maintain her body weight. This is a well-recognised aspect of dementia. There have been no other identified causes of malnutrition which would be capable of reversal. All appropriate drivers of her malnutrition beyond a limited oral intake driven by advanced dementia have been adequately explored.c. Increasing her body weight and thus her BMI does not result in the reversal of the risks arising from her low body weight and malnourished state. In order to benefit from increased weight, it has to be in connection with an increase in muscle mass. This is not possible for ROO because her physical frailty and her neurological condition mean that she is not able to undertake any form of physiotherapy in order to develop muscle mass. At present her condition is such that she cannot even be lifted from the bed on a hoist due to the discomfort it causes her.d. The guidance from a variety of sources is strong in relation to the use of artificial nutrition in advanced dementia cases. The 2018 NICE guidance states, “encourage and support people living with dementia to eat and drink taking into account their nutritional needs…Do not routinely use enteral feeding in people living with severe dementia, unless indicated for a potentially reversible comorbidity” Mr Johnston notes that there is no potentially reversible comorbidity in ROO’s case. The 2014 American Geriatrics Society position statement also advises against artificial feeding and encourages efforts to enhance oral feeding by altering the environment. The 2015 ESPEN guidance also advises against the initiation of tube feeding in patients with severe dementia. Mr Johnston referred to studies which were referred to by Dr Ahmad in his statement. In a large-scale study involving over 36,000 nursing home residents with advanced dementia and eating problems it concluded that there was no difference in survival rates between those who underwent artificial feeding and those who were maintained on oral nutrition. The 2018 ESPEN guideline on clinical nutrition and hydration in geriatrics advises against tube feeding or intravenous feeding when no benefits for the patient are expected and refers to patients with incurable disease which cannot be improved by any treatment including nutritional support (e.g. advanced dementia). The patient’s comfort is the highest priority.e. Dr Johnson says that the purpose of nutritional intervention is to stabilise and/or improve global physical function. He says this will not occur for ROO as she has terminal advanced and irreversible dementia. He highlights that she is not in a position to improve her physical function and thus will not gain any direct benefit from artificial nutrition. He identifies that the impact of nutrition is independent of the delivery route whether oral, intravenous or tube. He concludes that nutrition interventions are futile for ROO.f. Dr Johnston described in some detail the procedure for administering intravenous nutrition. He also dealt in some detail with the insertion of a tube into the stomach or the small bowel. Given that neither are in issue in this case I do not intend to deal with them further. He was clear that the current line which is being used to deliver hydration could not be used to deliver nutrition. He said the risks of infection are too great. A further line would have to be inserted which would involve the insertion of the needle and line which would be fed up through the vein in the upper arm or chest wall into one of the large veins close to the heart. The delivery of nutrition by intravenous line has to be into one of the large blood vessels because of the effect it could have on smaller blood vessels. Following the insertion of the line the nutrient levels in ROO’s blood would have to be very carefully monitored over at least the next 10 days. High levels of nutrients can be as dangerous as low levels and can cause organ failure in themselves. Thus ROO would have to undergo blood testing on a daily basis as well is blood glucose testing. The testing would then guide the amounts of the component parts of the nutrition that were delivered. Without that testing ROO would be at risk of serious organ damage through imbalances in the nutrient levels in her blood. As I understand that this is re-feeding syndrome. In addition to this because of the nature of the nutrients infection is a serious risk. Whilst those who are able to manage their intravenous lines can minimise this risk and can lead ordinary lives it remains a risk. The presence of an infection in a person with intravenous nutrition being provided is a very serious matter given the placing of the line and the needle near the heart. It is an automatic blue-light admission to hospital. The administration of artificial nutrition through an intravenous line would require ROO to be attached to a line and bag for at least 12 hours per day. Although there is no reason why a nursing home cannot manage intravenous nutrition some are reluctant to do it and would need training. Although an intravenous line is not uncomfortable in the way a naso-gastric tube is and is less at risk of being pulled out by a patient there is still a risk of it being removed or more seriously being pushed into the arm with the consequent risk of infection. Dr Johnston noted that ROO had not interfered with the current intravenous line delivering hydration. Further complications can involve blockage.g. Dr Johnston was of the very clear opinion that intravenous nutrition was not in ROO’s best interest based on the absence of any likely benefit from it and the intensive and invasive monitoring it involves and the potential for side effects. He thought the key intervention in her case was to address her current oral intake and to improve or maintain that. Removing her from an acute medical ward with all of the distractions that entailed and putting her in a more natural environment where her family and her nursing staff would be able to encourage her to eat and to take an enjoyment from it would be a more productive route forward.

ROO’s Current Condition

[54]ROO is currently in a bay on an acute medical ward. There is constant nursing presence although she is not on one-to-one nursing. She is offered food roughly every two hours. Sometimes she accepts it, sometimes she will refuse it, although with encouragement she may take it after an initial refusal. The evidence from ROA, from Dr Brooke, and from the Official Solicitor all show that ROO has a fluctuating level of functioning. At times she is aware and interacts with individuals at others she is curled up in bed asleep and does not engage at all. A lawyer instructed by the Official Solicitor was able to see her interact to a degree with a member of the nursing staff who encouraged her to take some drink. However she then did not engage at all with the official solicitor who attempted to speak to her.[55]She is now bedridden and cannot be even lifted from her bed to sit in a chair. She has lost her ability to sit. She occasionally will speak up to 5 words. She has intermittent recognition of those who are familiar to her. It seems to be generally acknowledged that her sons and perhaps ROA are the individuals she does recognise and gain some pleasure from.

ROO’s Views

[56]Michael Butler a lawyer instructed by the Official Solicitor visited ROO on 11 October 2018. Although he saw a member of the nursing staff engaging with ROO and persuading her to drink, he was unable to engage with ROO at all. Despite attempting to engage with her and ask her questions he got no response at all although she was awake and apparently alert.[57]The hospital has recorded two instances when ROO has said the words ‘I want to die’. She also nodded her head when Dr Brooke asked her whether it was true that she wanted to die.[58]The Official Solicitor’s representative has spoken with members of ROO’s family to seek to establish what her wishes would be in relation to the proposals. None of her three children could recall any discussions with their mother which might shed light on her wishes in the current circumstances. In varying ways, they described her as strong or independent and wanting to live. Her sister who appears to be someone who has been close to her and perhaps still is described how ROO believed in a natural life and how she rejected many aspects of modern life being an organic vegetarian and practising alternative medicine. She had for instance not wanted her children to have usual childhood vaccinations. ROO’s sister said that in their younger days they had talked over big life issues and her view was that ROO would not want the life she has now, and would not want to be dependent.[59]ROA of course believes that ROO retains her intelligence and wit and were she to be helped to regain weight would recover some of her energy and engagement and with the benefit of further investigations that her neurological function might be restored to some degree. It is implicit that he believes that she would wish for the further investigations to be carried out and for the intravenous nutrition to be provided to facilitate that.

Discussion

[60]Section 2 MCA imposes a ‘diagnostic threshold’ which in this case is addressed by the medical evidence contained in the medical reports. I am satisfied on the basis of the medical evidence that ROO currently lacks capacity to take a decision for herself. There is no means by which she could currently be enabled to make a decision. On the evidence currently available it is possible to say that the current lack of capacity is likely to be permanent. The lack of capacity arises from an impairment or disturbance of the brain arising out of Grade 5 subarachnoid haemorrhage, left middle cerebral artery stroke and small vessel ischaemic damage.[61]In determining whether it is in ROO’s best interests to be discharged from hospital in her present condition; whether it is in her best interest to be taken off palliative care until there has been a full investigation and definitive diagnosis of the cause of her deterioration since 2012 and whether it is in her best interests to be given artificial feeding by way of TPN nutrition until she can eat enough to keep herself alive I need to consider in particular whether there is a definitive diagnosis in relation to the cause of ROO’s deterioration since 2012.[62]It emerges from ROA’s statement and his submissions that the central concern that he has is that in 2014 the dry tap lumbar puncture gave rise to concern that the shunt was not operating correctly and was either over draining or under draining and that this was impacting upon ROO’s neurological functioning. He is concerned that at that stage Mr Pople had indicated that a further operation might be appropriate in order to investigate further and perhaps to replace the shunt. ROA’s position is that in effect Mr Pople was put off from doing that by interventions by the wider family and by perhaps Dr Harrower and thus that the opinion he expressed in 2014 remains a valid one and should be further considered.[63]However it is clear from the medical evidence that has emerged since 2014 and in particular the views of Professor Whitfield, who has considerable experience and expertise in this area, that the issue of a malfunctioning shunt has been explored by him as well as other neurology clinicians and has been discounted. His letters of May 2018 and September 2018 comprehensively address the question of the functioning of the shunt and whether any investigations remain outstanding in relation to concerns over whether it is over or under draining. The summary of the medical evidence that I have set out above makes clear that he is quite satisfied that the imaging including a recent CT scan as well as the MRI scan show brain volume loss as a result of the severe subarachnoid haemorrhage she sustained in 2008 and that the ventricles do not have the appearance of CSF over drainage or subdural collections consistent with over drainage. Dr Harrower also considered that there was no imaging evidence of hydrocephalus or suggestive that the shunt was blocked. The clear balance of opinion of all of the neurological clinicians is that ROO’s current condition is well explained by the subarachnoid haemorrhage and subsequent events and that a malfunctioning shunt is not a contributory factor and thus requires no further investigation.[64]The totality of the imaging evidence in combination with the clinical picture of a deterioration in physical and cognitive functioning is entirely consistent with a severe insult to the brain as a result of the severe subarachnoid haemorrhage which was subsequently compounded by the further ischaemic damage sustained in/further stroke in 2012 and which has progressed further through small vessel ischaemic damage. Thus the medical evidence overwhelmingly points to ROO’s current neurological condition being attributable to those causes which took place in 2008/2012 and subsequent further progressive changes compounded by acute events such as the infection in August 2018 and the epileptic seizure on 29 September 2018. Whether these are appropriately described as damage to the structures of the brain or whether they are described as vascular dementia does not alter the fundamental issue which is that the evidence clearly demonstrates that ROO is suffering from irreversible changes in her brain as a result of those incidents. She is not suffering from the consequences of a malfunctioning shunt either over draining or failing to drain CSF fluid from the brain. Her condition is therefore irreversible and has been in my view fully explored. Even Mr Pople who is central to ROA’s arguments has himself indicated that no further investigations or treatment are appropriate.[65]If that is the case then in medical terms ROO meets the diagnostic criteria for vascular dementia of a severe and progressive kind. Sadly it is irreversible and will continue to deteriorate. The clear evidence of the treating clinicians and Dr Johnston is that loss of appetite and consequent weight loss is a well-recognised feature of dementia. It is also sadly clear that ROO has already reached a stage where her physical functioning has deteriorated to such an extent that she is unable to undertake any physical activity. The severe pneumonia she suffered from in August 2018 and the severe epileptic fit she experienced in September 2018 further diminished her functioning. She is not able even to sit and cannot undertake either active or passive resistant physiotherapy. That being so she is unable to reverse the loss of muscle mass which she is experiencing as a consequence of not consuming sufficient calories and not being able to undertake any form of physical exercise. The nutrition that she consumes appears currently to be maintaining for instance her electrolyte and blood glucose levels within normal parameters such that she is not at immediate risk of organ failure. There is thus no need to provide artificial nutrition to redress imbalances in these respects. The provision of artificial nutrition might provide more calories than she currently takes by her oral intake but will not convert into a benefit for her in terms of an improvement in her muscle mass. It will therefore add nothing to her well-being. The evidence of Dr Johnston was very clear that ROA’s belief that an increase in calorie count will result in an increase in her energy levels and functioning is mistaken. Although it might increase her BMI above the identified critical level at which organ failure or sudden death becomes an issue that is illusory because the BMI index itself does not accurately reflect what causes those risks to arise. Unless the BMI increase is reflecting an increase in muscle mass it is of no benefit to ROO. The evidence referred to by Dr Ahmad and Dr Johnston of the large-scale study of patients with dementia demonstrates that there is no benefit in terms of length of life to patients as between artificial nutrition and oral nutrition. Thus the evidence establishes that there is no benefit to ROO in administering artificial nutrition given that she is still able to take nutrition orally.[66]ROA believes that the administration of intravenous nutrition will necessarily result in an increase in her energy levels and in her attentiveness and ability to engage and that will thus improve her ability to perhaps undertake some physiotherapy or to withstand further investigations or physically to be in a position to enable the investigations to take place. The clear evidence of Dr Johnston is that this is simply not borne out by medical knowledge as I have set out above. He notes that when ROO was in hospital in the summer she gained 3kg in weight but there was no discernible improvement in her functioning and he says this supports his conclusions. I agree.[67]What appears to be clear is that ROO does fluctuate in her presentation. A simple marker of this is contained in the record of the calories that she consumed as noted by the Official Solicitor in the period 4 - 9 October which ranged from 400 cal through to 1445 cal. The evidence also suggests that her level of engagement with even her sons and ROA varies as it does with the medical staff. That fluctuation in her presentation is not linked to whether she has consumed more or less calories as Mr Johnston identified. It is a feature of her underlying neurological condition rather than a function of nutrition. Therefore providing more nutrition will not have a causal effect upon her level of engagement.[68]The totality of the medical evidence clearly establishes that the provision of artificial nutrition will not have any discernible benefit to ROO.[69]In the absence of any discernible benefit to ROO the issue of the disadvantages of providing intravenous nutrition need relatively little consideration. Given that there are clear disadvantages in the form of the need to undertake a further procedure to insert the line, the risks of the line being pushed in or pulled out, the intensive monitoring including daily blood tests which would be required and the risks of infection, or re-feeding are all significant disadvantages which would accompany the provision of intravenous nutrition when there is no discernible benefit to ROO in any event.[70]The evidence in relation to ROO’s wishes and feelings in relation to the application is very limited. She of course does not currently have capacity. She has not given any advance directive in relation to her treatment and there is nothing in writing elsewhere from her which would indicate what her views would be in respect of the treatment proposed. In respect of what she said to the hospital staff and the indication she gave to Dr Brooke I do not think it’s safe to place any reliance on that as her real indication of what she wishes to happen to her. The evidence suggests that at times when she is in a better condition she engages with her children and ROA and takes pleasure from that interaction. She may also still gain pleasure from eating or contemplation. At other times she may have an awareness of her condition and may wonder whether it is worth continuing. In particular if she is feeling unwell she might understandably express a wish to die but I do not think that much, if any, weight can be placed on this in the context of what else is known about ROO. She is described as a fighter, independent, a believer in the circle of life. There are also though indications that while she does not have capacity she is unhappy at intrusive medical treatment or other intrusions into her personal space. She removed the nasogastric tube. She declined medication, food, she does not want a nasogastric tube reinserted. That suggests that she does not welcome further medical intervention, and the more intrusive it is the less she would welcome it. I therefore do not think she would want to be subjected to intrusive treatment which would accompany intravenous feeding. It is clear that an intravenous line would have to be inserted and that it would require intensive medical intervention in terms of monitoring thereafter. I do not consider from what I’m able to glean of her wishes and feelings that she would want this to be undertaken particularly if she knew that the medical evidence was that it would not actually bring any benefit to her. Nor do I consider she would be likely to want to undergo further investigations such as a further lumbar puncture still less an operation when the medical evidence was that it was neither necessary or appropriate. The evidence is that she needed to be sedated for the 2014 lumbar puncture which indicates that she was not comfortable with that.[71]The views of her family are mixed. Those who are closest to her namely her husband and her sons believe the treatment should be pursued. ROA believes that strongly, their sons perhaps less so but they would want to give her every chance they could.[72]Although I have been considering all of these issues against the legal framework in the context of life-sustaining treatment ultimately the evidence leads to the conclusion that none of the orders sought by ROA actually engage life-sustaining treatment, in particular in relation to intravenous nutrition because given that ROO is still able to feed herself orally and there is no additional benefit to her of artificial nutrition it does not become a question of sustaining life.[73]I have no doubt that nobody in the case whether treating clinicians or otherwise in any way has any desire to bring about ROO’s death. In respect of ROA and family they wish to maximise her life in terms of duration and quality. In relation to all of the treating clinicians they wish to maximise the quality of her life against a recognition that she is in the terminal phases of severe progressive vascular dementia.[74]Drawing all of those issues together to reach a conclusion as to what ROO’s best interests are viewed on the broadest perspective, as I concluded on Thursday 25 October I’m satisfied that:a. Due to the nature of her neurological condition ROO will not recover in a way which will lead to her eating enough to keep her alive. The nature of the progressive vascular dementia that she is suffering from is such that she will sustain loss of appetite and will wish to eat less and less as time passes. That is an inevitable consequence of her condition. There is therefore no prospect of her reaching a position where she can eat enough to keep herself alive in the sense that it appears in the application; namely that she will recover to a position where she will want to and will be able to eat anything approaching a normal diet which would be accompanied by exercise in a way which would sustain her life. Thus having regard in particular to the evidence of Dr Johnston and the guidance on artificial nutrition in patients with dementia there is no benefit to ROO of giving artificial nutrition and nor do I believe she would want to be given it having regard to the intrusive nature of it being administered and the risks of complications which accompany it. I therefore do not consider it to be in ROO’s best interests in the circumstances she currently is in to be given artificial feeding by way of intravenous nutrition.b. The medical evidence clearly establishes the nature of ROO’s neurological condition. There has been a full investigation and insofar as medical science allows there is a definitive diagnosis. There is no need or purpose in further investigation or attempts to reach an alternative diagnosis. The only alternative identified by ROA namely the malfunctioning shunt has been comprehensively addressed and discounted by a number of doctors including Professor Whitfield. I therefore do not find that it is in ROO’s best interests to have further investigations in order to reach an alternative diagnosis. Dr Brooke told me, as I have referred to earlier, that ROO is still being given treatment for her condition. She is not being treated as an end-of-life patient at the current time. She has been given antibiotics and other medication for instance. In that sense she is not on what ROA describes as a palliative care regime. The evidence is that ROO is in a stable condition and fit to be discharged to a nursing home where she would continue to be nursed in a manner appropriate to her deteriorating condition. I therefore conclude that it is not in ROO’s best interests for her to be taken off palliative care until there has been a full investigation and definitive diagnosis of the cause of her deterioration since 2012.c. The premise underlying the first order that ROA seeks is that ROO should remain in hospital so that artificial nutrition can be administered and so that further investigations can be undertaken. ROA says that she should remain in hospital albeit being transferred to the North Devon hospital nearer to ROA and her sons. The NHS Trust and Dr Johnston have concluded that there is no purpose to be served in her remaining on an acute medical ward and given my conclusions in respect of artificial nutrition and further neurological investigational treatment, I am in agreement with them. Dr Johnston in particular, having regard to the various guidelines, identified that to maximise the quality of life that ROO has and in particular to maximise the environment in which she takes oral nutrition and is able to interact with people a transfer to a nursing home close to her sons and ROA would appear to be in her best interests. The more relaxed and natural environment of a nursing home would be more conducive to her engagement with her family and other aspects of her life including feeding than the environment of an acute medical ward. I do not therefore agree that it is not in her best interests to be discharged from hospital in her present condition. As matters stand it would appear that her best interests would be met by transfer to a local nursing home.[75]I therefore refuse ROA’s application in respect of the three orders that he sought because I do not consider it to be in ROO’s best interests to make the orders sought. I declined the NHS Trust’s invitation to go beyond the application and to consider making declarations as to ROO’s best interests in relation to palliative care. I did not have the evidence before me or the time available to do so. The issue of ROO’s future care therefore is a matter for discussion between the NHS Trust and her family. No doubt the contents of this judgment in relation to various aspects will inform those discussions but I have not sought to give any determination as to the future save in respect of the issue of discharge from hospital to a nursing home. What treatment plan is put in place in relation to ROO is a separate matter.[76]I appreciate that my decision is a blow to ROA and to his sons. They are of course absolutely entitled to reach their own conclusions on the medical evidence and to question what the treating clinicians determine is best for ROO. Having considered the wide-ranging sources of medical evidence that have been presented to me and having tested that with two of ROO’s treating clinicians and an independent expert I am satisfied that the conclusions I have reached are objectively those which are proper on the totality of the evidence before me and that my decisions as to what is in ROO’s best interests properly reflect all of the evidence including medical evidence and evidence as to ROO’s wishes.[77]Cases such as this inevitably involve tragedy. That ROO was struck down by a subarachnoid haemorrhage at such an early age is truly a tragedy that she and the family have had to live with in the 10 years since. ROA presented his case with restraint and dignity and he has clearly done absolutely everything that he could do for his wife and for his sons. Although inevitably he will disagree with this decision I hope his conscience will be clear that he could have done no more to promote his wife’s best interests.[78]That is my judgment