England and Wales Court of Protection Decisions

IN THE COURT OF PROTECTION

		Royal Courts of Justice Strand, London, WC2A 2LL
		24/05/2013

Mrs. Justice Eleanor King DBE :

1. This is an application made by the NHS Foundation Trust in the Court of Protection for a raft of declarations in relation to a young man, M, who was born on 19^th June 1990 and so approaches his 23^rd birthday.
2. M was tragically born with a congenital abnormality of the brain called holoprosencephaly ("HPE"). HPE is a condition in which the frontal lobes of the brain fail to separate correctly into two frontal lobes. There are four types of HPE, of which alobar is the most serious and ordinarily fatal in utero or early postnatal. Semilobar is the second most serious variant and the one from which M suffers. The condition is extremely rare, progressive, and ultimately fatal. The oldest HPE patient described in the literature was 19 years old.
3. It is common ground that in the period of time since 2010 M's condition has significantly deteriorated. He is now seriously malnourished and, in the view of both the treating physicians and independent experts instructed for the purposes of this hearing, reaching the end of his life.
4. The painful and difficult issues now to be faced by M's family, the medical team that have cared for him so diligently over many years, and ultimately this court, is to what extent should M be treated in Intensive Care or be given cardio-pulmonary resuscitation ("CPR") in the event that there is a further deterioration in his condition. There is no question of M having the capacity himself to make any of these decisions. The family and treating physicians, whilst they have worked well together over the years, have been unable to reach a consensus, and it therefore falls to this court to make declarations as to what serious medical treatment is lawful and in M's best interests.

Background

5. M was born in the north of England. At birth he had a cleft lip and pallet, which were repaired. M's father was in the Army and the family were posted to Germany. It was soon noted by the Army doctor that M had a very small head and was making very limited developmental progress. Soon M was showing obvious signs of cerebral palsy. He was unable to move on his own. He started to develop contractures in his joints and a hip became dislocated. Imaging of his brain was carried out in Germany, suggesting the diagnosis of semilobar HPE. This, therefore, was the cause of his cerebral palsy and of his general developmental delay.
6. On his return to the UK, M's parents were unable to cope. To M's immeasurable good fortune, his care was undertaken then, and remains now, with his devoted aunt, Ms K, his psychological and real mother in every sense of the word.
7. No one reading this judgment, and seeing the extent of M's disabilities and the challenges of caring for him, present and past, can have other than the utmost admiration for Ms K. Having seen Ms K give evidence, it would be quite wrong of either this court or anyone to seek either to patronize her or, on the other hand, to regard her as some unimpeachable martyr. Ms K is completely devoted to M. Her care of him has undoubtedly been a labour of love; the pleasure M and K have had from each other over the years shines out through the evidence. She spoke in written and oral evidence of the fun they have had together over the years, and of how, even though M cannot speak, he communicates with her; and of how , even now, he bosses her around, making vocal noises and eye movements to tell her in no uncertain terms what he wants. Ms K is loving and must have unending stamina, she is also tough and resilient, and has undoubtedly on occasion challenged and been challenging to those doctors and nurses who have been caring for M. It would be impertinent of this or any court to presume to understand how hard it must be for Ms K to face the fact that M's life is drawing to a close – if not in days or even weeks, inevitably in the foreseeable future.
8. As indicated, M has lived with Ms K for most of his life. Ms K has been supported in her care of M by a team of physiotherapists, occupational therapists, and with special schooling.
9. M's condition falls towards the most serious end of HPE. In his case the two halves of the front part of his brain are fused and so, instead of there being a fluid-filled chamber or ventricle in the two halves of his brain, there is a single ventricle in the middle of the front part of the fused brain. In real terms it means that there is considerable loss of brain substance, resulting in M's cerebral palsy and his severe learning difficulties. M is confined to a wheelchair. He has never been able to walk. Although Ms K, with her intimate knowledge of M, believes she can interpret his wishes and needs, she is unique in being able to do so.
10. As the years have gone by, M has suffered almost all of the complications of cerebral palsy. He has developed osteoporosis (thinning of the bones), which is a recognised feature of HPE, and has as a consequence suffered two fractures of his legs with only minimal trauma. He has developed sclerosis (curvature of the spine), which has required major corrective surgery. A further deeply distressing feature of HPE is feeding difficulties which results in the majority of HPE patients ultimately requiring artificial feeding. In October 2007 M's difficulty in swallowing became such that a gastrostomy tube and peg had to be inserted to allow him to be fed directly into his stomach.
11. Dr J, a Consultant Paediatrician, had the care of M for many years. He sought to put the scale of M's medical difficulties into context in the report he prepared for these proceedings by referring to the fact that M's clinical records are the most extensive records that he has, in the 34 years in which he has practised as a paediatrician, ever seen. They amount to at least fourteen volumes.
12. In 2007 M had a prolonged hospital admission between 16 August 2007 and 25 October 2007. His sclerosis was corrected, which resulted in a prolonged period in Intensive Care, and ventilator support. His swallowing difficulties had resulted in him having profound malnutrition, which required a period of parietal nutrition. Between his discharge from hospital in October 2007 until his re-admission to hospital on 4 June 2010, Ms K describes what was undoubtedly a golden period in her life with M. The gastrostomy meant that M could be fed adequately and he gained weight, slowly but steadily. That is not to say that life was all plain sailing, for that can never be the case for M. In December 2007 his right femur fractured due to his osteoporosis, and in December 2008 his left femur fractured. He also had to have miserable and painful dental work during the course of 2008.
13. When he became 19, M's care was transferred to the Adult Rehabilitation Team and Adult Gastroenterology Service from the Paediatric Service.

2010 to date

14. M's admission to hospital on 4 June 2010 marked what I am satisfied was the beginning of a downhill path for M. Even Ms K, who understandably keeps herself going by focusing on the boy she described to me as being jolly with a wicked sense of humour, as loving the diamond in his ear and the bracelets on his wrist, and a wonderful young man, even she concedes that he is "not as good as he was a few years ago".
15. Dr J'S role having passed over to the adult services, M's day-to-day care is carried out by Dr S (Consultant Physician), Dr B (a Consultant Anaesthetist and Clinical Lead for Intensive Care), and Dr S (Consultant Physician and Gastroenterologist). From time to time second opinions have been sought from a Dr M (a Respiratory Physician) and Dr O (a specialist in relation to nutrition).
16. In June 2010 M had two brief admissions to hospital before being re-admitted on 7 July 2010. M had an underlying infection of unknown source and there were difficulties settling his temperature. The presence of renal stones was noted, and at one stage he had a urinary tract infection
17. On 24 August, however, M's condition deteriorated and he was admitted to Intensive Care in the middle of the night. He remained in Intensive Care for two months, until 29 October 2010 due to the considerable difficulties in weaning him off a ventilator. He was subsequently moved off ICU, breathing on his own, but with a tracheotomy tube in situ. M was eventually discharged home to Ms K on 9 December 2010, almost six months after his initial admission.
18. Sadly, M was at home for only a short time before being re-admitted to hospital on 26 February 2011. Once again, he was severely hypentremic with underlying infection. On 1^st March 2011 case conference concerning M's care took place. It was unanimously agreed that it would not be appropriate to treat M in ICU as the case conference took the view that such a case would lead to a worse quality of life than previously, in that he might end up requiring long-term institutional care in the event that they were unable to wean him from the ventilator. A decision was made at that meeting to seek a second opinion regarding his long-term prognosis, but in the meantime he would be neither intubated nor ventilated if his condition deteriorated.
19. On 14 March 2011 M was seen by Dr B (Critical Care and Home Ventilation Consultant), who approved the treatment M was receiving. He expressed the view that if M reached the stage when his requirement for critical care was part of an ongoing general deterioration, then ventilation would be both futile and inappropriate.
20. 2011 was marked by repeated hospital admissions for M. In August the renal stones were removed, which both Ms K and Dr S believed reduced M's pain. In the latter part of August, in an attempt to improve M's nutrition, a duodenal extension was put onto M's peg. On 14 September 2011 he was discharged home.
21. 2012, however, showed further deterioration. Again, M had to be repeatedly admitted. He had a brief period of three months between July and October, when M was out of hospital and staying with Ms K at her daughter's home. During that period M appeared to remain reasonably well. His weight rose to its maximum recorded of 44 kilograms. Sadly, that plateau was not maintained. On 7 October 2012 he was admitted to hospital, where he remained an inpatient until 4 April 2013. This period was marked in November 2012 by it having been necessary to feed M by a TPN (total parietal nutrition), that is to say, nutrition by line. This caused M considerable pain and distress, complicated as it was by line sepsis, displacement, tension, pneumothorax and surgical emphysema. Between October and December M's weight dropped by 16 kilos to around 30 kilos. A second opinion was sought in relation to his nutrition. Advice was given and implemented, but with no effect.
22. 2013 has shown no improvement for M. Further renal stones were removed in January and March, and on 4^th April M was discharged home, weighing 32.8 kilos. Unfortunately, he was re-admitted a couple of weeks later on 24 April 2013 with so-called "coffee ground vomiting". His weight had fallen to 30.8 kilos. M remains in hospital, but once again it is hoped that he may be discharged next week as at the moment he seems reasonably well. The stark facts are that between June 2010 and April 2013 M has spent 79 of the last 147 weeks in hospital and has a total of eighteen admissions since 2010.

The present position

23. Dr B sums up M's present position as follows:

"Over the last six months his condition has progressively and irreversibly deteriorated, with profound muscle loss secondary to an inability to maintain adequate nutrition, despite every possible effort being made. It is my view that his condition will continue to deteriorate as it is proving impossible to achieve weight gain due to failure of both intravenous and inertial nutrition and unless …. the situation can be reversed, then he will continue to deteriorate to the point of respiratory failure. At this point [M] will be in a condition from which it is extraordinarily unlikely that he could recover, even with ventilation in Intensive Care."

24. On 25^th February 2013 the Trust took a best interests decision that M should not be resuscitated, resulting in a DNAR (do not attempt resuscitation) Form being completed.
25. On 7^th March the Trust sought declarations that:

(i) M lacks capacity to litigate and to make decisions in relation to the serious medical treatments at issue in this application;

(ii) It is lawful, and in M's best interests, that the applicant's treating clinicians shall be permitted not to resuscitate him in the event of either a cardiac or respiratory arrest;

(iii) That in the event of a serious deterioration in M's health, it is lawful and in his best interests that the applicant's treating clinicians are permitted not to escalate his treatment by way of an admission to ICU, save for a reversible condition; and

(iv) Should M's condition further deteriorate such that in the Opinion of the treating clinicians he has entered the terminal stage of his illness, it is lawful and in M's best interests for him to receive such palliative care and related treatment, including pain-relief and axiosis until medical supervision is considered appropriate to ensure that he suffers the least distress and retains the greatest dignity until such time as his life comes to an end.

26. Accordingly, the Official Solicitor, on joint instructions, commissioned a report from Dr Robert Winter (Consultant in Anaesthesia in Intensive Care). Dr Winter read the medical reports and saw M on the ward on 28^th April. A report was also commissioned from Dr Barry Jones (Consultant Physician and Gastroenterologist with a special interest in clinical nutrition), who also read the papers and visited the hospital on 29^th and 30^th April, when he saw M and held meetings with both the treating doctors, the family and the nursing staff.
27. The Trust and the Official Solicitor on behalf of M now seek final declarations to the effect that M should not be resuscitated, should not receive intensive care treatment (specifically that he should not be mechanically ventilated), and should not be given antibiotics in the event of contracting pneumonia again.
28. Ms K, having heard the evidence of Dr B (the treating intensivist) now agrees to such a declaration in relation to CPR; but she says that she wants M to be given "every chance", as she sees it, and that should include antibiotics for pneumonia and ICU treatment.

Malnutrition

29. Much of the Trust's position on the need for an urgent decision on escalation of care and CPR was predicated on the assumption that M is severely malnourished and at risk of dying. The start must therefore be a consideration of M's nutritional state and the impact it has upon M's prognosis. The written and oral evidence has been of necessity complex and technical. In fact, when stripped back with the assistance of the experts, each of whom has shown in their evidence a commendable ability to render the concepts and issues understandable to the lay person, M's position is in fact distressingly easy to understand.
30. Between October 2012 and April 2013, M suffered a 30 per cent weight loss – 44 kilos to 30.8 kilos. In part, because it is difficult accurately to measure M's height, it has not proved easy objectively to measure M's nutritional risk using the conventional means and measures. M is, however, Dr Jones is clear, at considerable risk on the basis of his percentage weight loss alone. Studies of famine, of concentration camp Victims, and of hunger-strikers show that the survival potential of a patient who started well-nourished and who has not been stressed by illness is greatly decreased when there has been a weight loss of more than 35 per cent. Dr Jones therefore concludes, and it is not challenged, that M therefore must be regarded as at imminent risk of mortality. M, he says, would be unlikely to survive another attack of pneumonia, even with intensive care, and he would not respond to nutritional support with active infection and his degree of malnutrition.
31. M's deteriorating inability to receive nutrients has been gradual, given his HPE and inevitable process. He lost a considerable amount of weight as his ability to swallow became increasingly compromised, so that in 2007 he weighed only 20 kilos, although that was prior to the heavy metalwork being inserted into his back during the surgery for his sclerosis. What was different then from now was that he could still process nutrients, although it became impossible for him to swallow food. As Ms K put it to me during the course of the hearing, he was literally starving. Once the gastrostomy peg was inserted and he was fed directly into his stomach, he put on weight as he was at that stage still able to absorb and take up nutrients.
32. The next stage, however, was marked by his stomach failing. That resulted in August 2011 in the duodenal extension being put on to the peg, so that M was thereafter fed directly into the small bowel, as opposed to directly into the stomach which was no longer working. For a while M did exceptionally well with this. Whilst at home with Ms K and his sister, M put on weight steadily until he achieved his best ever weight of 44 kilos when he was admitted to hospital in October 2012. As noted, however, he has since lost 30 per cent of his body weight.
33. Despite the strenuous efforts of all those caring for and seeking to nourish M, his weight has not responded. M has been receiving 2,500 calories a day – an enormous quantity. The pattern has been that when he has vomited, the flow into his peg is cut for a period, often an extended period of time in order for him to recover from the bout of vomiting. Following discussions at court between Dr Jones (the expert) and Dr S (the treating physician), it has been agreed that the calories should be reduced to 1700 a day, which will still provide M with an excess of 400 calories a day over his clinical needs and which would be available to provide weight gain. Also the rate of intake is to be slowed down with a view now to having a continuous flow of food. The danger, however, with such a continuous flow is that it comes with an increased risk of aspiration and therefore of pneumonia, which would be fatal.
34. The dilemma for the treating physicians and Dr Jones is therefore as follows: is it better for M for death to be permitted by starvation caused by inadequate feeding in order to prevent aspiration pneumonia; or is it better to attempt maximal inertial feeding at the expense of increased risk of aspiration pneumonia, even if that feeding does not, in fact, result in improved nutritional status? Furthermore, in setting out the dilemma Dr Jones says that starvation will in itself bring about death by pneumonia in most cases. Feeding directly into the small bowel will not prevent aspiration pneumonia. Any further severe sepsis such as pneumonia will be tolerated poorly while M's weight is so low, since his nutritional reserves are so displeasing. In Dr Jones' opinion, and on the balance of risks, he concludes that it is in M's best interests to receive the maximum tolerated feed via his tube, but with a clear understanding that this might lead to further aspiration pneumonia or aspiration of secretions anyway.
35. Both the doctors and Ms K have agreed with that view, and therefore it has been decided that the calories will be reduced, flow will be slowed down but will be continuous, everyone realising that this may increase the risk of aspiration, and Ms K understanding that in the event that that results in pneumonia, it will not be treated with antibiotics.
36. The new feeding regime agreed at court might lead to M gaining some weight. If he does, it could increase his limited life expectancy by up to 50 per cent. In response to questions put before the hearing, Dr Jones said that optimisation of the present regime may permit more nutrition to be delivered and to be absorbed, although he suspects it will not, but "this is no guarantee of prolonged survival. He will eventually decline further – sooner rather than later – and this will inevitably lead to further life-threatening infections and death". In oral evidence Dr Jones, Dr Winter and Dr B all concluded that M's prognosis is very poor.
37. The reason why M is no longer taking up nutrients and therefore putting on weight is complex. Dr Jones cannot say if the atomic failure extends to the small bowel and colon, as until very recently sufferers of HPE would have died long before reaching that stage. It follows that Dr Jones cannot be sure why the small bowel now seems to have stopped working. What he can say is that it would in any event have a ceiling beyond which it could not function due to the effects of the opiate medication M receives for his incessant pain and the stress his body is under. There is no specific evidence that M is failing to absorb the more than adequate levels of nutrition which he is being given. Dr Jones believes that the explanation is that there is a more than 50 per cent chance that M has now entered the phase where his body is simply no longer able to make use of the nutrients, even though he can absorb them. Under certain conditions a metabolic block exists. This occurs when the uptake of nutrients and synthesis of proteins by cells is inhibited, whereas the breakdown of cell structures continues or increases. This is termed catabolism, or hypercatabolism with inhibited anabolism and enhanced tissue breakdown. In layman's terms, it means that no matter how much food is administered there will be no synthetic response in muscle to that food. At best, nutrition can only be expected to maintain muscle bulk, but not return it to normal. This type of progression, as Dr Jones believes is now seen in M, is often seen in end-stage cancer patients and patients with progressive neurological diseases such as dementia.
38. Dr Jones' opinion that M has reached this stage and that this is the cause of his inability to put on weight, rather than suffering from a specific absorbsion problems, is reinforced by the fact that his vitamin D levels are normal, showing that he is, in fact, absorbing vitamin D from his liquid nutrients. HPE, Dr Jones tells the court, is associated with eventual demise from a number of causes connected with the numerous related HPE complications. In M's case, most likely that would be infection in the form of pneumonia. But in the new world of sophisticated means of artificially feeding HPE sufferers, long after they have lost their ability to swallow, the cause of death may, if they are kept alive long enough, be nutritional death, or effectively starvation, often again with the final cause of death being the resulting pneumonia.
39. There is accordingly unanimous medical opinion that, in the event of M contracting pneumonia, he should receive palliative care only and no antibiotics. The court was told by Dr Winter that pneumonia is a relatively peaceful and easy way to die. He reminded the court that pneumonia used to be called "the old man's friend". No one can estimate M's life expectancy. His prognosis is very poor, and he is entering the final stages of his young life. How long he survives is likely to depend on when he contracts pneumonia or another catastrophic complication either through aspiration or sepsis, or consequent upon his inability to take up nutrients. Dr Winter, supported by the other doctors, spelt out how antibiotics should be used from now in M's best interests:

(i) They should not be used to treat his intermittent, low-grade pyrexia;

(ii) A short course should be used to relieve minor infections such as urinary tract infections in order to relieve his symptoms and discomfort;

(iii) They should not be used if he develops pneumonia, which would be regarded a terminal illness and would not be in his best interests to treat.

40. Dr Winter summed it up by saying that antibiotics should from now on be used as treatment for suffering and not treatment for infection.

CPR

41. If M went into cardiac arrest it would almost certainly be as a consequence of hypoxic cardiac arrest consequent on multiple organ failure, rather than a conventional heart attack. The agreed medical view is that any attempts to resuscitate would almost certainly fail, and, in the unlikely event that it succeeded, the following consequences would flow:

(1) the process of carrying out CPR would almost certainly fracture some of M's ribs as a consequence of his pre-existing osteoporosis, with the resulting pain and discomfort;

(2) the fractured ribs would serve further to compromise his respiratory system;

(3) even without that painful and distressing complication, if M had a cardiac event and was successfully resuscitated, he would thereafter need to be put onto a ventilator in order to keep him alive;

(4) once on a ventilator it would probably be impossible to wean him off it thereafter (see consideration under Intensive Care); and

(5) a consequence of the hypoxic event which led to the cardiac arrest would be further brain damage, further limiting M's already seriously compromised cognitive function.

42. Dr B describes CPR as "beyond futile". It would, he said, be a very painful process, without benefit, even if he survived. Dr Winter describes CPR in M's case as being "painful, distressing and undignified".

Intensive Care

43. Dr B and Dr Winter are intensivists. It goes without saying, therefore, that day in, day out they see and treat patients who are being assisted to breathe via mechanical ventilation. They gave insight in particular into two key areas: one medical culture, and one clinical, but providing invaluable background to a consideration of M's particular circumstances:

(1) Dr Winter explained that in the UK the approach to intensive care treatment is to trial and then withdrawal, rather than to withhold. A short-term trial of treatment and then withdrawal, if necessary, is commonplace in Intensive Care Units up and down the country. He gave, as an example in relation to M, that if he had a serious nosebleed which needed packing, that would require a general anaesthetic and a short period of time on a ventilator. The alternative, if one were dogmatic about the use of a ventilator in those circumstances and a decision had been made that there should be no ventilation, would be simply to allow M to die from a nosebleed. Therefore, so far as such a reversible condition is concerned, they would carry out the procedure and, if needs be, withdraw ventilation if it turned out that, even after a very short period of time on ventilation, he could not be weaned off it. That explains why, contrary to the view of Dr Jones, the intensivist would accept that for a trivial reversal issue, such as the re-fit of M's feeding peg, short-term ventilation would be in M's best interests.

44. Dr Jones was not unnaturally concerned that there may be difficulty in identifying a reversible event. Having heard and seen the intensivists, I feel confident that what may seem to a different speciality or to a layman as an issue fraught with difficulty is to them a relatively straightforward clinical judgment of a type they routinely make. Having said that, Dr B, at my suggestion, could see the value in drawing up some basic guidelines as to the type of circumstances in which this short-term (hours, not days) ventilation might seem to be appropriate. It seems to me that what may be a relatively straightforward and commonplace clinical decision to the doctors needs guidelines if for no other reason than to help Ms K and the family to have some understanding of when M may have treatment.

(2) This trial and then withdrawal approach does not, however, mean that come what may a patient is put on a ventilator. This is the approach Ms K understandably favours. The basic approach remains that in a case such as M's, where he is approaching the end of his life, in the event that the presenting problem requires intensive care and therefore ventilation, that is part of a terminal illness, and M should not be put on a ventilator, but rather should receive palliative care. In M's case, as already indicated, the most likely event would be infection, probably in the form of pneumonia.

45. Dr B said in his evidence that the default approach moving forward should be that M's condition is irreversible, and that there should be no intensive care and therefore ventilation, allowing for their clinical judgment being used to identify the vanishingly-rare situations which they may regard as reversible and therefore justifying limited short-term ventilation.
46. Each of the intensivists spoke of the realities of intensive care. Dr B, when speaking of it, told the court that M is frightened by things. He knows things are going to hurt; and because of his condition he does not understand why things are being done to him, or why they are hurting. If he was put in Intensive Care, there would be a risk of numerous complications: pressure sores, it is disorienting, he would have to have extensive sedatives in order to tolerate the ventilation, it disrupts sleep, and it is psychologically regarded as highly disturbing. He would be in a lot of pain.
47. Dr B said that the reality is that M cannot be offered a realistic chance of improvement and survival, ventilation is just cruel. He has no wish to put M through such a distressing thing when he has no chance of recovering. If he cannot be weaned off, he would either have to be kept on the ventilator until infection or total organ failure took over, or the ventilation would have to be withdrawn. Given his life expectancy and the fact that he is at the end stage, "if you stuck him on a ventilator", Dr B said, "you would be prolonging his death, not prolonging his life, and I have profound difficulties with that".
48. Dr Winter, for his part, spoke of intensive care as not being a "benign treatment". He explained how patients with capacity, who have made a recovery after intensive care, when talking of their experience, talk, for example, of the tube and of the suction – necessary parts of the ventilation process – as having been an intolerable aspect of intensive care. Dr Jones said that in HPE cases the belief is that the receptive cognitive function of the suffers of HPE is considerably better than expression function, so that M is almost locked in, and we need to think of that when contemplating the trauma of a further long period of mechanical ventilation, even though he would be sedated, particularly given that his view is that it would be futile.
49. I was reminded by counsel for the Official Solicitor that, in considering the impact of further ventilation on M, I have also to bear in mind that whilst there is heavy sedation during ventilation, that sedation thereafter has to be drastically reduced when attempts are made to wean M off the ventilator, thus exposing him to increased pain and distress, and consciousness of that pain and distress, in circumstances where the overwhelming medical view is that such attempts to wean him would fail, necessarily leading to a further decision to withdraw ventilation and move to palliative care only – a move to that, would come however, only after he has been through the trauma described by the intensivist.
50. It is against the harsh, even brutal, reality of what mechanical ventilation treatment in an Intensive Care Unit would mean for M, that I must consider what is in his best interests.
51. Ms K has drawn the court's attention to the critical care discharge summary found in the medical records in relation to M's admission to ITU in August 2010. At that time he weighed approximately what he does now. He was admitted to the Unit with pneumonia, having been on the ward already for ten weeks prior to admission. He was finally weaned off the ventilator, with difficulty, three weeks later, on about 14 December 2010. Ms K's understandable position is that if he was successfully weaned off a ventilator then, why should he not be weaned off a ventilator again now if he contracts another bout of pneumonia?
52. The position has, the experts say, moved on significantly since that time. The admission in 2010 followed a period of nearly three years when, by and large, M was well. He had no significant hospital admissions and no sepsis. That meant that, although he was light, his muscle mass was relatively good and, significantly, his ability to manage nutrition was less impaired. The fact Dr B says that M has spent two-and-a-half out of the last three years in hospital shows that this is the case. In that time he suffered repeated infections, and the stress to his body occasioned by those infections has been significant. If M is placed on a ventilator, he has to be weaned off it, or it has to be withdrawn. To be successfully weaned off it, his muscle mass and control must be sufficient to be able to breathe independently. In his present malnourished state, in his inability to take on nutrients, he is unlikely to recover enough to breathe independently.
53. To be weaned off a ventilator, M's catabolic state would need to be improved; but the compromise to his ability to utilise nutrients means that, even with the more than adequate nutrients that he receives, he cannot increase it. Both Dr Jones and Dr B share the view that, even if Dr Jones' suggestions for improving M's nutritional status are implemented and succeed, resulting in a gain of weight (which is regarded as unlikely), it is unlikely to be a sufficient improvement to allow M to survive a further period in intensive care. Dr Winter was uncompromising in his expert opinion that it would be impossible to wean him off a ventilator. M already has seriously compromised muscle mass, this is compounded by infection. In addition to that, it is well-known that in the first 48 hours on a ventilator the respiratory muscle mass declines between 40 and 60 per cent in a previously-well person. All this militates against M being able to breathe alone again once he is ventilated.
54. There is no argument but that M's nutrition should be optimised. If it increases his survival chances by up to 50 per cent longer in the absence of an infection, that is undoubtedly in his best interests. The fact remains, however, as Dr B puts it, and Dr Winter agrees, that the chances of his surviving a further period on Intensive Care are "zero".

The Law

55. The law is agreed between the parties and therefore for the purposes of this judgment I substantially read in the law as has been set out by the Official Solicitor on behalf of M in her position statement dated 20^th May 2013.
56. In relation to capacity, the evidence clearly establishes that the nature and extent of M's disabilities consequent upon his HPE are such that he lacks capacity to litigate or to make decisions in relation to his medical treatment, and in particular about the issues before the court. There is no question of him gaining capacity in the future. It is agreed by all, therefore, that M lacks capacity to make these crucial decisions and is unlikely ever to be in a position to make them.

Best Interests

57. Section 1(5) of the Mental Capacity Act 2005 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."

Section 4 provides guidance as to how the decisions are to be made. Section 4(2) provides:

"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 it 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) When 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 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 be considered 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 matters of that kind,

(b) anyone engaged in caring for the person or interested in his welfare,

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

(10) 'Life-sustaining treatment' means treatment which in the view of a person providing health care for the person considered is necessary to sustain life.

(11) 'Relevant circumstances' are –

(a) of which the person making the determination is aware, and

(b) which it would be reasonable to regard as relevant."

58. The Mental Capacity Act Code of Practice prepared and issued by the Lord Chancellor under section 42(1)(b), and to be taken into account by the court under section 42(5) as relevant to the question arising in these proceedings, provides relevant guidance at paragraph 531:

"All reasonable steps which are in a person's best interests shall 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 patients 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. Such guidance is found, for example, in guidance provided by the GMA."

59. There is a strong presumption in favour of the preservation of life: see, for example In Re M (Adult Patient, Minimally Conscious State: Withdrawal of Treatment) [2012] 1 WLR 1653 (at paragraph 7), where Baker J referred to the presumption in favour of preservation of life as a fundamental principle. Such principle does not, however, displace the patient's best interests as the paramount consideration for the court.
60. The court will not order medical treatment to be provided if the clinicians are not willing to offer that treatment on the basis of their clinical judgment: see AVS v NHS Foundation Trust [2001] EWCA Civ 7, per Ward LJ (at paragraph 35). But the power under section 15(1)(c) of the Act to make declarations as to the lawfulness or otherwise of any act done, or yet to be done, in relation to the person, enables the court to rule on the lawfulness of the proposed withholding of life-sustaining treatment: in this case the provision of resuscitation in the event of cardiac or respiratory arrest and/or admission to Intensive Care in the event of a serious deterioration in M's health.
61. The test to be applied by the court is whether the treatment would be in the patient's best interests. The question whether this is a case where the treatment would be futile, overly burdensome to the patient, or where there is no prospect of recovery is a central, but not the only question in the overall assessment of where the best interests lie.
62. The matter was recently extensively considered by Ward LJ in Aintree University Hospitals NHS Foundation Trust v David James and Others [2013] EWCA Civ 65. At paragraph 44 Ward LJ said:

"As I indicated in my discussion on the meaning of 'futility', what the guidance is concerned with is answering the question: how should someone's best interests be worked out when making decisions about life-sustaining treatment? As is stated at 530 of the Code of Practice, it is up to the doctor or healthcare professional providing treatment to assess whether the treatment is life-sustaining in each particular situation. In other words, the focus is on the medical interests of the patient when treatment is being considered to sustain life. That is not to say the doctors determine the outcome, for it is the court that must decide where there is a dispute about it, and the court will always scrutinise the medical evidence with scrupulous care."

At paragraph 45 he went on to say:

"The fact that I have concluded that treatment would be futile, overly burdensome and that there is no prospect of recovery is but one pointer to where the best interests of where DJ lie. Not to treat him may be in his best medical interests, but the question remains whether it is in his best interests overall, and here I have to accept that the term 'best interests' encompasses medical, emotional and all other welfare issues: see Wall LJ in Portsmouth Hospitals NHS Trust v Wyatt [2005] EWCA Civ 1181 at [84] following Re A [2000] 1 FLR 549.

It may not be possible to attempt to define what is in the best interests of a patient by a single test applicable in all circumstances: see Lord Phillips of Worth Maltravers MR in Birk's case at [63], but some help is given by the Mental Capacity Act itself. The court must, pursuant to section 4(6), consider so far as is reasonably ascertainable the person's past and present wishes and feelings, his beliefs and values, and the other factors he would be likely to consider if he was able to do so. The court must take into account the views of those caring for DJ as to what would be in his best interests, and particularly what they consider to be his real wishes and feelings."

63. In determining what is in M's best interests in this case, I respectfully adopt the words of Ward LJ and apply them to M's circumstances.
64. In relation to CPR and Ward LL's question, namely does the treatment secure the therapeutic benefit for the patient, that is to say the treatment must, standing alone or with other medical care, have the real prospect of curing, or at least palliating, the life-threatening disease or illness from which the patient is suffering. I conclude the answer to that question is M's case is: no.
65. The conclusion of the doctors is that, whatever the precise cause of M's inability to maintain his nutritional status, (and even if the changes it is agreed will be made to optimise his nutrition result in chances of some improvement), M will nevertheless continue to deteriorate, he is in the end-stage of his life, albeit that no one can hazard a precise timescale. Even if CPR were effective, it would not reverse the trend, but rather would prolong the inevitable. As M is highly unlikely to suffer a cardiac arrest from a primary cardiac cause, any cardiac arrest he is likely to suffer necessitating CPR will be a consequence of the end-stage of his HPE. The arrest would be unlikely to be reversible and would result in further brain damage.
66. Accordingly, CPR would provide no therapeutic benefit to M. Such treatment would, it is agreed by all the medics, be futile. The fact that that treatment is futile is, however, but one pointer as to where the best interests of M lie. Taking into account the likelihood of painful rib fractures, further loss of cognitive function, and the inevitability that a successful resuscitation would lead to mechanical ventilation, I unhesitatingly conclude that it is not in M's best interests to be resuscitated. Ms K bravely agrees. Given M's extensive disabilities, it is not possible to ascertain his own wishes and feelings, although I note that Ms K, in her written material, had the firm belief that, had he capacity, M would wish to be resuscitated. I respect the view expressed by the person who knows M best.
67. In all the circumstances, therefore, I make the declaration that M should not be resuscitated.

Intensive Care

68. The question in relation to escalation to intensive care treatment in relation to M is in two parts:

(i) so-called reversible condition, such as the examples given by the doctors of nosebleed or peg adjustment; and

(ii) consequent upon infection or other end stage condition which would be regarded as part of terminal illness.

69. (1) The immediately reversible conditions would not result in futile treatment M would have the therapeutic benefit of making him more comfortable and of giving him some symptomatic relief. It is agreed by all that receiving such treatment would be in M's best interests. The parties will in due course draft an appropriate declaration and the doctors will put in place guidelines for such intervention which Ms K can see and understand.

(2) The situation is very different if intensive care / ventilation is being considered against the backdrop of infection or as part of a terminal illness. In my judgment, notwithstanding Ms K's heartfelt and understandable wish that M should receive intensive care treatment and that he should be "given a chance", I am satisfied that there is no therapeutic benefit to M to be ventilated in such circumstances. Such treatment would offer him no prospect of a cure and, far from palliate his life-threatening condition, would subject him to unnecessary discomfort and indignity.

70. I accept the evidence that it is highly unlikely that M could thereafter be weaned off a ventilator, and that he would therefore face the prospect of going through the trauma of ventilation only to be withdrawn from then to allow conservative palliative care when the attempts to wean him off the ventilator inevitably failed. I conclude, therefore, that intensive care treatment would be futile by whatever definition, and, that, taking into account all the circumstances, including the wishes of Ms K and her perception of M's wishes were he able to communicate them to the outside world, it would not be in his best interests for such intensive care treatment to be undertaken.

Postscript

71. During the course of the trial questions were asked through counsel on behalf of Ms K as to the practicality of M being able to die at home and for Ms K to be given help and support in providing palliative care in the home environment. The Trust unhesitatingly confirmed that they would do all they could to ensure that this is achieved.
72. It follows therefore that, all being well, M will return home on Monday. When, as is inevitable, he reaches the final stages of his life, Ms K will receive help and support to care for him. He will not go back into hospital and receive intensive care treatment. He will not be given antibiotics for pneumonia, nor will he be resuscitated when his heart finally stops. He will, all in this court hope, die peacefully – as peacefully as can be achieved – in his own home in the care of the woman who has been his mother and who has dedicated two decades of her life to his care and wellbeing.
73. In those circumstances, Mr Karim, I make the declarations sought.
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