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You are here: BAILII >> Databases >> England and Wales Court of Protection Decisions >> RAO v ROO & Anor [2018] EWCOP 33 (25 October 2018) URL: http://www.bailii.org/ew/cases/EWCOP/2018/33.html Cite as: [2018] EWCOP 33 |
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Strand, London, WC2A 2LL |
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B e f o r e :
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RAO |
Applicant |
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- and - |
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ROO (By her Litigation Friend the Official Solicitor) - and - ROYAL DEVON AND EXETER NHS FOUNDATION TRUST |
1st Respondent 2nd Respondent |
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Nicola Greaney (instructed by The Official Solicitor) for the 1st Respondent
Fiona Paterson instructed by the 2nd Respondent
Hearing date: 25th October 2018
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Crown Copyright ©
Mr Justice Williams :
Introduction
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.
Background
"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 Artificial nutrition was withdrawn on 7 September and ROO put on palliative care…Dr Warren wrote 'ROO is now at the end of her life.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
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.
The Parties' Positions: a summary
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.
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.
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
'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.
'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.
(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.
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
'[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.'
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."'
"…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.
"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."
Factual background and medical evidence
The Neurological Evidence
"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."
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
Artificial nutrition
a. ROO currently meets the diagnostic criteria for malnutrition with a body mass index below 18.5kg/m˛. 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
ROO's Views
Discussion
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.