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||Neutral Citation Number:  EWHC B26 (Fam)
||Case No: COP1239210
IN THE HIGH COURT OF JUSTICE
||Royal Courts of Justice
Strand, London, WC2A 2LL
B e f o r e :
MR JUSTICE HAYDEN
||- and -
|| 1st Respondent
Vikram Sachdeva (instructed by Kennedys) for the Applicant
Michael Mylonas QC (instructed by Pannone LLP) for the 1st Respondent
Andrew Hockton (instructed by Pannone LLP ) for the 2nd Respondent
Hearing dates: 8th,11th November 2013
HTML VERSION OF JUDGMENT
Crown Copyright ©
MR JUSTICE HAYDEN:
- I am concerned, here, with an application by An NHS Foundation Trust concerning a declaration, both in respect of capacity and in relation to medical treatment, of a patient in their care. The patient is VT, who was born on 5th April 1941 and is now 72 years of age. There is a consensus that VT does not have capacity to make decisions about medical treatment relating to the escalation of his treatment and/or his resuscitation. The Trust considered that a declaration, in the terms below, would be in the patient's best interests.
It would be UNLAWFUL:
(a) to provide intensive care in the event that the respondent's condition deteriorates/collapses whilst an inpatient or on readmission as an emergency patient;
(b) to provide resuscitation following cardiac or respiratory arrest, other than the provision of bag and mask resuscitation, for long enough, in the judgment of the attending clinical staff, to ensure that the acute episode requiring such resuscitation is overcome but not for so long as to require going on to any other form of artificial resuscitation and, in particular, and/or a mechanical ventilator.
- VT has been very unlucky with his health. He has a past medical history which includes: insulin-treated, type II diabetes mellitus; a stroke in 2000, with residual left-sided weakness; hypertension; and chronic renal impairment. Prior to admission, he was able to walk for a few steps with a Zimmer frame but he was housebound and needed assistance, both with toileting and feeding. He has, however, been fortunate in having an extremely attentive and loving family. Over the last 10 years, VT's day-to-day life has been very circumscribed. Though he has been able to speak and communicate, his general ability has consistently reduced and he has ultimately required assistance with virtually every aspect of his life. The family has shared responsibility for VT's care between them. It is obvious, listening to them, as I have done, that the responsibility has not been burdensome to them. To my mind, they have regarded it as a privilege and an opportunity to show their father how much he is loved by the whole family. I have not the slightest doubt that over the course of the last decade, this family have enabled their father, despite the privation of his circumstances and his confinement to the house, to live a rich and happy life. VT, in turn, appears to have borne his frailty without complaint and the entire family, most of whom still live at home, have actively enjoyed a good quality of family life.
- On 28th May 2013, VT suffered a cardiac arrest. This is likely to have been precipitated by community-acquired pneumonia, as VT had been increasingly unwell for a three-week period preceding his collapse and was, quite plainly, suffering from a chest infection. It is entirely indicative of the quality of care that he had been receiving that, upon his collapse, his eldest son, A, was immediately able to commence CPR and had the skill and endurance to maintain it for five minutes, until the ambulance arrived. In the ambulance, resuscitation was continued for pulseless electrical activity of the heart and on arrival in the Emergency Department, it was noted that VT's Glasgow coma score was 3 - the minimum that can be registered. It appears, in total, that there was cardio-pulmonary resuscitation for about 17 minutes before there was a return of spontaneous cardiac output.
On arrival at the hospital, VT was ventilated, cooled and sedated. He was anaemic and as there was, a background of chronic renal failure and the possibility of haemorrhage this was corrected by transfusion. An initial CT brain scan showed an old frontal parietal infarct, cerebral atrophy and evidence of small vessel disease – I was told probably due to the diabetes. The cooling and sedation were stopped after 24 hours. After five days, it is recorded that VT: "…remained in coma, with abnormal, extensive posturing on stimulation, at a time when he was not sedated significantly."
- Professor Michael Swash has filed a report in this case and, has given evidence during the course of the hearing. I will return to his evidence in due course but I will merely, at this point, note his summary of the statistics relating to out-of-hospital cardiac arrest. He has told the court that, even amongst patients who have a return of spontaneous circulation, the mortality rate is greater than 70%. In addition, the success rate of out-of-hospital CPR after cardiac arrest is less than 10% and, of every five patients resuscitated in hospital, less than one survives to discharge. In general, the longer the duration of CPR and the longer the interval between the onset of collapse and the initiation of CPR, the poorer the outcome. Initial hypothermia was applied to VT, as I have related, as it has been shown to improve the prognosis for a functional recovery but, even then, only to a minor degree. In simple terms, that VT survived after his collapse was really quite remarkable.
- Dr Navapurka, a Consultant in Intensive Care Medicine and Anaesthesia, and Clinical Director of the John Farman Intensive Care Unit, was responsible for VT when on duty at the Intensive Care Unit. Each individual consultant is responsible for his or her clinical decisions whilst on clinical duty but issues of concern are raised with Dr Navapurka, who carries ultimate responsibility, as the Medical Director. Between 28th and 31st May, Dr Navapurka considered that the overall clinical picture was one of a patient who was not waking up after a period of anoxia, post-cardiac arrest, that was consistent with anoxic brain damage. The view at the hospital was that "the outlook for recovery of any meaningful neurological function for this frail gentleman was very poor."
- Between 1st and 6th June, the hospital considered that there was no improvement and that there was continuous, abnormal extensive posturing, consistent with brain damage. The family had been spoken to on admission and at length on 1st June, by which time it had already become clear that meaningful recovery was not likely and, following discussions, a 'Do Not Resuscitate' sign was placed upon VT's notes. The family have told me that they were not consulted about this decision but I am perfectly satisfied that they were. VT's elder son, addressed this in cross-examination. In my view, he was mature and reflective and he accepted ultimately that they may well have been consulted but that, at the time, they may have been so confused and upset, in struggling to absorb the information that they were being given, that they had not fully appreciated to what they were agreeing to. I find that to be far more likely.
The decision was taken to extubate VT, as he was no longer dependent on intubation. The Intensive Care Unit notes for 1st June 2013 stated that there was:
"No realistic expectation of survival with brain function, which would enable VT to be substantially aware and be able to enjoy the experience of being alive."
It is recorded:
"All the family we spoke with agreed that extubation would now be the only correct action. They feel that extubation while he is spontaneously breathing fits with their religious beliefs. They requested that we delay extubation until tomorrow or, at latest, 14:00 hrs, to allow family to visit and key family members to be present at death. They also wish an Imam to be present. All expressed their appreciation of management and plans."
- By 3rd June, the family had further reflected and had considered that they did not want their father's records to be signalled with 'DNR' and said that, in the light of their strongly held religious views, the withholding of treatment was something upon which they wished to consult with a religious advisor. There were a number of medical tests on 3rd June and, indeed, in the weeks that followed, which highlighted the ongoing extent and gravity of the damage caused to VT by his heart attack. An electroencephalography (EEG) on 3rd June showed a low amplitude, which was featureless, with no reactivity to tactile or noxious stimuli. There were no convincing wave forms of cerebral origin. There was no EEG responsiveness to stimulation; there was no evidence of sub-clinical seizures. All this indicated a very poor prognosis and a failure to improve clinically.
- The family has not always been clear, consistent or, indeed, even logical in the expression of its views. The grasp of both the medical evidence and the theological position that they themselves advance, is, at times, tenuous. Why, I ask myself, would it be otherwise? They are neither consultants nor imams. They have sought the guidance of both but, in my judgment, they have ultimately been driven back onto instinct. They all believe that VT would have wanted to avail himself of every possible opportunity for survival in its crudest, most basic sense, no matter what the pain involved, no matter what the prospects for long-term survival might be, no matter what quality of life might lie at the end of the journey or, indeed, during it. Those ultimate decisions they believe to be for Allah alone. They believe that VT's suffering would also cleanse him from sin, would prepare him for death and would be borne by him with stoicism, in recognition of that process.
- Three specialists have given their opinions as to what VT's best medical interests are. I heard personally from Professor Swash. He is the emeritus Professor of Neurology at St Bart's Hospital, London, and Honorary Consultant Neurologist at the Royal London Hospital. He has held many distinguished and significant appointments but perhaps of note is that he was Chair of the East London and City Ethics Committee for seven years, between 1994 and 2001. Professor Swash saw VT on 9th September 2013 and prepared his first report on 28th September. In his opinion, VT was in a minimally conscious state. He could see some evidence of reactivity with his environment, such as: "…alerting in response to pain or sound and some attempt to gaze fixation to the right." He told me that he concluded that these observations indicated a post-anoxic encephalopathy though he was at pains to stress that MCS did not preclude subjective awareness, although it could not be assessed. Professor Swash readily conceded that the best people to appreciate the extent of the awareness were often the family. They frequently, as here, spend many hours with the patient in an intensive way that medical staff are simply unable to. The family believed that there had been progress in, it seemed to me, precisely the sphere that Professor Swash had considered possible, i.e. reactivity to sound, pain and to family members. The accounts that the family gave of VT lifting a finger in prayer or turning his head, or, indeed, exhibiting pain, were, in Professor Swash's view, within the range of activity with which he agreed were possible on 9th September 2013 and did not indicate any significant progression. It is entirely understandable why the family might see these signs as more significant. In this view, Professor Swash articulates the views of all those involved with VT from the medical perspective.
- Dr Adams, Consultant Neuro anaesthetist whose evidence I will come to in due course, expressed it in these terms:
"Given the nature of his injury, it is entirely predictable that some degree of neurological improvement will occur over a period of time. However, because the brain injury has been caused by lack of oxygen to the brain following a cardiac arrest, the expectation is that recovery will be extremely limited. It is extremely common for relatives to perceive outward signs that have not been picked up by the medical or nursing staff. This is not surprising, as they would be looking actively for signs of improvement and may also notice subtleties or peculiarities that are individual to the patient and the staff may not be aware of. Whilst it is important to take account of these observations, the clinicians are also guided by their own assessments, the serial radiological imaging and the electro-physiological tests. I note that the patient has also been regularly assessed using validated assessment tools for patients in a low conscious state. The overwhelming evidence points to a frail gentleman with a very severe brain injury, who has no prospects of any meaningful recovery."
- Professor Swash thought that if VT were to survive the coming months, there would be a prospect of slight improvement, probably manifested by greater response to the family. The prospect of any meaningful recovery of communicative ability, however, was considered to be highly unlikely. In Professor Swash's view, VT would never recover any kind of motor function which, it must be remembered, was limited even prior to his admission to hospital. VT will also remain dependent on PEG feeding and possible occasional ventilation. Ultimately, Professor Swash was only able to say that the prognosis was poor, determined by:
(i) an irremediable ventilatory difficulty;
(ii) progressive renal failure associated with diabetes and hypertension;
(iii) the likelihood of further cerebrovascular episodes with infarction;
(iv) the high probability of a further intercurrent cardiac arrest and cardiac infarction;
(v) intercurrent infection, especially a pulmonary infection;
(vi) pulmonary embolism; and
(vii) circulatory failure, with limb ischaemia.
He considered it unlikely that VT would survive longer than one year, at best, during which time he would not regain meaningful cerebral function. However, he acknowledged that it was also the case that the longer he survived, the greater the chances of further survival – the mortality risk being greater in the first few weeks and months after the hypoxic brain damage. Without the availability of high level support in a properly equipped ITU, it was Professor Swash's opinion that it was unlikely that VT would survive longer than a few weeks but, clearly, he said, "he might pass away at any time," notwithstanding the level of care or development of any of the complications that he has identified.
Professor Swash agreed with counsel, who I will, for convenience, refer to as acting for the family, that the term, "minimally conscious state' refers to the conditions of patients who show minimal but definite evidence of awareness, despite profound cognitive impairment. He agreed that patients emerging from the vegetative state often enter the minimally conscious state, which may be the end point of their improvement or a staging post on the way to recovery. It was put to Professor Swash that as the guidance from the Royal College of Physicians, dated 2003, suggests that patients in persistent vegetative state should be observed for 12 months after head injury and six months after other causes before vegetative state is judged to be permanent, then at least that period ought to be afforded to the minimally conscious state. Professor Swash did not accept this proposition. He emphasised the age of VT, the extent of the co-morbid symptoms and the fact that we are not, in this case, considering trauma. In response to questions asked of him by the parties, Professor Swash, in a subsequent report, observed that if VT were to be readmitted to the ITU, the fact of him being in a MCS means that he would be virtually unaware of attempts to resuscitate him and to prolong his life, or that the process of CPR carries a risk of rib external fractures and pulmonary injury.
- In evidence, Professor Swash further crystallised his concerns relating to intensive care therapy – in my view, by that stage, having had the benefit of considering the report of Dr Adams, which, as I have said, I will come to in due course. Intensive care treatment, he said, would require invasive monitoring, in the form of arterial bi-cannula, peripheral cannula, central venous cannula and also possible oesophageal Doppler probe. Minor organs would also be further compromised in order to support blood pressure and cardiac output. These processes might possibly, in Professor Swash's view, precipitate the death of a patient. There was, he considered, an inevitability of further brain damage if CPR was used for cardiac resuscitation. The process, however minimal, and at the very best that could be achieved, would elicit no prospect of recovery.
- I then heard from Dr Navapurka, who remained very clear that if VT suffered from further cardiac arrest, it would not be possible to restore cardiac function, if at all, without what he termed, "…extreme levels of invasive multi-system support." As Professor Swash had pointed out, that itself carried a morbidity, in and of itself. In his view, such levels of support would be inconsistent with survival, as after a short period of time, the patient would not respond to treatment, his heart would stop beating again and then he would die. In Dr Navapurka's view, this was simply not in the patient's best interest and did not strike him, as he put it, as, "…either kind or sensible." Of course, in that last comment, Dr Navapurka was expressing his own analysis of best interest from a medical perspective. My task, of course, for reasons that I will come to, is to survey a much broader canvas than the purely medical, important though that plainly is.
- Mr Michael Mylonas, Queen's Counsel, on behalf of the Official Solicitor, prepared closing submissions in writing, which I have found extremely helpful, and from which I draw to highlight the key features of Dr Navapurka's oral evidence. Intensive care, he said, would require organ support and multi-system support that would be very extensive and would be an intense burden to the patient, both physiologically and clinically. A number of the organs are already dysfunctional, so you would have increasing damage, such that you would accentuate organ dysfunction in an attempt to support other organs. Some organs, as he put it, "…would simply have to take a hit." You would have to insert, he told us, large bore drips. In relation to inotropes, he explained that as a research fellow, he had for research purposes self-medicated with them and could speak to the fact that they cause profound headaches and palpitations. He thought it very likely that multi-system support would cause damage and that the chances of survival were very slim. The burden of support, he said, would extract a huge price. There was not, Dr Navapurka considered, any organ function here that was uncompromised. Analysing the effect of renal replacement therapy on the patient, Dr Navapurka considered that it would cause shivering and likely contribute to further infection. It would also create a nutritional burden to the patient, which would require a, "…catastrophe…", to use his phrase, to justify its implementation, and he drew the court's attention to the literature that suggested that in a fit, 70 kg man on a CPAP machine, body loss of 25% to 30% is not uncommon within one week. Dr Navapurka said that VT would simply not survive renal replacement therapy. Indeed, multi-system support would cause only damage. The chances of survival, he opined, are not only very slim, but the burden of support would, he emphasised, be unsustainable.
Cardiac arrest, Dr Navapurka told us, would, with absolute certainty, cause further brain damage and, looking at the situation as a whole, even if the family had accurately described what VT's view would have been, were he able to communicate them, Dr Navapurka told me that pursuit of it would be, "…against all the things I stand for as a doctor."
- During the course of the case management hearings, A was not content to rely upon the evidence of Dr Navapurka, as he was head of the treating team. He was not happy to rely on the views of Professor Swash, who had been instructed independently by the Trust; but A considered, with a layman's anxiety for such matters, that the fact that the Trust had instructed Professor Swash compromised his independence. For the avoidance of doubt, I am entirely satisfied that Professor Swash gave his evidence to this court and in his reports with absolute professional integrity. A had, as I recollect it, not been able to obtain funding at that case management stage. I asked him if the real issue here was a religious objection to any clinical decision not to resuscitate or to abandon the prospect of intensive care. A told me, unequivocally, that this was not the position, but that he wished to explore, with all means available to him, where the best interests of his father lay medically, and it was for this reason that I approved the instruction, on behalf of A, of a third expert, perceived by him to be for the family. A's position has evolved and it is now primarily a religious objection. I believe that when he answered my questions at that pre-hearing stage, he had, in truth, simply not been able to crystallise his thoughts. I do not believe that he was being deliberately disingenuous; I think he clung onto a very simple proposition: that where there was life, there was hope, and he wanted to exploit any opportunity to advance that argument. In the event, the selected expert, Mr John Adams, Consultant in Neuro-Anaesthesia and Neuro-Critical Care at the Leeds Teaching Hospital, lent his unequivocal support to the two other experts, whose evidence I have already summarised. The report stands as evidence in the case and is ultimately, therefore, not challenged. When A gave evidence, he accepted that he was not in a position to challenge any of the medical evidence. He accepted that if the best interest of his father was purely an issue of medicine, rather than a wider analysis of his broader welfare needs, then he could not establish a case.
- Dr Adams provided a very thorough and, in my judgment, balanced report, which engages directly with the criteria of S. 4 of the Mental Capacity Act 2005, the framework within which I will come to make my decision. At risk of over-burdening this judgment, I highlight Dr Adams' central analysis. The only benefits to the patient, he says, of instituting CPR and providing intensive care treatment would be to prolong his life. Given his background medical problems and his known severe hypoxic brain injury, it is very unlikely that such therapeutic interventions would prolong his life for a significant period of time. In the "unlikely" event that VT were to survive a further Intensive Care admission, it is likely that he would accrue further organ damage, which could manifest itself as a reduction in his respiratory reserve, a decline in his cardiac and renal function and possibly a further loss of neurological function. As Dr Adams says, however, he did fully recognise that the patient would regard successful resuscitation as a benefit, as life would be preserved.
"I also understand that failure to resuscitate the patient in the event of a cardio-respiratory arrest would almost certainly lead to his death and this could not be regarded as beneficial, as life had not been preserved."
- It is, I think, finally, illuminating to consider Dr Adams' convenient summary of the disadvantages of intensive care. He describes these as follows:
1. "Ventilatory support with positive pressure ventilation would mean that the patient would have to go through the uncomfortable process of respiratory weaning, which is associated with fatigue and subjective feeling of breathlessness.
2. Any admission to Intensive Care would be associated with the insertion of peripheral arterial and venous cannulae and, most likely, central venous cannulation also. These can be uncomfortable procedures but are wholly necessary to guide therapeutic interventions. Given that the patient has been hospitalised for some time, with repeated blood sampling, these procedures may be more difficult and prolonged. It is also inevitable that the patient would require sampling of bodily fluids, such as blood and respiratory secretions – this is also uncomfortable for the patient.
3. The patient would require regular assessment of his neurological status and it would be inevitable that his sleep cycle would be disrupted. This frequently causes fatigue and agitation.
4. The patient would require radiological examinations regularly, which will often be performed on the Intensive Care Unit but may necessitate transportation to distant sites, with all the associated risks.
5. The patient would be at risk from further hospital-acquired infections, as well as opportunistic infections, as a result of his inevitably impaired immune system. This is likely to require him to be isolated, with further restriction on family visiting."
- In relation to ventilation, Dr Adams said that he thought it was highly likely that any significant deterioration in the patient's condition would be associated with a decline in respiratory function and the need for artificial ventilation. This could not be delivered in a ward environment and would require intensive care treatment. It would consist of: artificial inflation of his lungs by a ventilator; antibiotics to treat any infections; regular sampling of respiratory secretions by suctioning or bronchoscopy; regular physiotherapy; and serial radiological examination. Any episode of artificial ventilation would require a period of weaning. If the patient deteriorated to the point where he required intensive care treatment, it was, in Dr Adams' view, very likely that other organs would also be affected. VT already has chronic kidney disease and his renal function has been affected each time he has had serious infections. A further decline in his renal function may be amenable to treatment with intravenous fluids, diuretics and BP manipulation but is equally likely to worsen to a point where renal replacement therapy, in the form of haemo-filtration, would be required. This would entail the regular insertion of large bore, central venal catheters, which can be associated with complications such as: damage to important blood vessels; pneumothorax; hemathorax; cardiac arrhythmias and retroperitoneal haematoma. Complications of haemo-filtering include: line infections; regular complications; fluid shifts, with loss of cardiac output; and serious electrolyte disturbance, leading to cardiac arrhythmias. It is likely that the patient would also require support for his blood pressure and cardiac output on the Intensive Care Unit. That would necessitate the use of invasive monitoring, in the form of peripheral arterial cannula, a central venous cannula and possibly an oesophageal Doppler probe. Cardiac-stimulating drugs and vasoconstrictor would be filtrated to effect. The vascular access required for this type of therapy needs to be replaced on a regular basis to prevent super-added line infections. Given that the patient has already spent a significant amount of time on the Intensive Care Unit, vascular access is likely to be challenging and may require multiple attempts. This could be uncomfortable, even painful, for the patient. The general considerations for intensive care treatment include: exposure to a noisy environment; sleep deprivation; agitation; deliria; possible further decline of cognitive function; a deterioration in nutritional status; and conditions such as critical illness neuropathy. He would be at risk of pain and discomfort during cares and procedures and, more generally, from his joints and soft tissue. This would be very difficult to assess objectively and, hence, to treat. Visiting may be restricted and there are, inevitably, long periods of time where the family is denied access to the patient, to allow critical therapeutic manoeuvres to take place. Intensive care treatment is associated with a risk of hospital-acquired - e.g. Clostridium difficile, MRSA - or opportunistic infections - Acinetobacter and Pseudomonas - and these would, inevitably, be associated with isolation and a further restriction in visiting.
- The purpose of intensive care treatment, says Dr Adams, is: to treat the triggering pathology; to restore organ function; to prevent further general and organ-specific deterioration; and to restore the patient to a state where they can have an opportunity of a meaningful quality of life. In this very sad case, he considered, the patient remains totally dependent on others for all aspects of his daily care and there is no prospect that he will recover that function. He is extremely frail and his life expectancy is short. Apart from possibly increasing his life expectancy by a small amount, resuscitation and intensive care treatment cannot improve the prospect of a return to a meaningful quality of life and will, inevitably, be painful and distressing for both the patient and his family. I have summarized Dr. Adam's views extensively because they provide, to my mind, an uncompromising, compelling, but, nonetheless, compassionate analysis of the overwhelming disadvantage of intensive care treatment to this patient. More than that they clearly articulate the concerns touched by Dr Navapurka and Professor Swash, that these interventions are wholly contrary to the central medical objectives of intensive care.
- I have taken some time to set out the scope and ambit of the medical evidence - partly, because I want to do justice to the breadth of the analysis deployed and the extent of the forensic inquiry that has been undertaken; but also because, to engage properly with a 'best interest' decision here requires the juxtaposition of both the practical and the conceptual: for example, the weight to be given to the intrinsic value of life itself, measured against both the pain and indignity of invasive procedures to a patient in a minimally conscious state, whose treatment will be unable to remedy any physiological abnormality and can, at best, only preserve the existing parlous situation. Whilst the two can be juxtaposed, they cannot, to my mind, really be balanced. We are not comparing like with like. The phrase, 'the sanctity of life' is a moral concept which threads its way through the English law but what does the concept of 'sanctity' imply to either a secular society or for that matter to the many different multi-faith communities of modern Britain? Indeed, what is meant by, 'life', when, as Lord Browne- Wilkinson observed, now, nearly 20 years ago in Airedale NHS Trust v Bland  2 WLR 36:
"A ventilator can sustain a beating heart, even though the brain stem and, therefore, the patient, is dead – 'the ventilated corpse.'"
On many fronts, medical science has progressed more quickly than the ethical and linguistic framework within which we can absorb its developments. What has been said so many times before in cases of this nature, but undoubtedly bears repetition, is that every case is different. I certainly could not attempt to put it better than did Hedley J in Portsmouth Hospitals NHS Trust v Wyatt  1 FLR 21:
"The infinite variety of the human condition never ceases to surprise and it is that fact that defeats any attempt to be more precise in a definition of best interests."
What is, perhaps, 'different' about this case is not that the family wish to bring an end to their father's suffering but that if he is suffering, as seems likely, (though we cannot know to what degree), his suffering be continued by active intervention, preserving, if necessary, only the dimmest flicker of life itself. They want, because they believe that he would want, every effort to be made to preserve his life, however compromised. If CPR would, they say, cause further brain damage and distress but, nonetheless, their father survives it, that, they believe, is the will of Allah. Moreover, to deprive their father of the opportunity to suffer is to deprive him of the chance to purify his soul in preparedness for death. These are the strongly held views of this family. I have no reason at all to believe that they differ from VT's views – indeed, they may well emanate from him; and having heard the evidence of the family, I am satisfied that if he had contemplated this sad scenario, the views expressed by his family would have been his, too.
- Both the experienced lawyers on behalf of the Trust and on behalf of the Official Solicitor have sought to analyse the evidence in such a way as to contend that these views would not have been those held by VT himself. They have done this because, in my view, they have started from the entirely understandable but, in this case, misconceived view that anyone in such extremis would want suffering to stop. However it would be, to my mind, quite extraordinary if this family were actively misrepresenting their father's view. The love and care that they have afforded to him has attracted positive comment from every professional in the case. They have, for over 10 years, during his invalide condition, showered him with love and care. They have done so cheerfully, unresentfully and showing a loyalty which is, in my view, inspiring. The assertion of his right, if necessary, to suffer in accordance with his faith has, by contrast, not always been understood and, indeed, has, at times, been unwittingly denigrated. Their actions are not "unkind" if they truly represent VT's own wishes, as I believe they do. In fact, in an increasingly secular society, where moral and religious relativism often prevail, it takes great courage to assert strong religious belief. Some time, but not a great deal, has been spent considering the roots of these views in the Islamic faith. Passages of the Quran have been cited in justification of them and reference has been made to a fatwa on the point. On the facts of this case, I believe these to be unnecessary. The views expressed and forcefully articulated by the family here, communicating a strong belief in the inviolability of life itself, have well known parallels in the Judeo-Christian tradition, theologians will find support for them in both the Torah, as well as in the New Testament.
- In the white heat of Intensive Care and in busy hospital life, the priority will always be the patient's physical welfare, and so should it be; but the family here contend that in analysing VT's best interest, I should consider him not only as a raft of complex medical problems, but more broadly as the man he has been throughout his life and, on some level, who they consider still is: his morality; his faith; his ethics; and his religious beliefs. They are right to ask me to do this – indeed, I believe that VT's wishes and feelings are one of the most important of the factors that I should have regard to, though they are not – I emphasise – determinative. Thus, I approach the law from a different factual premise to either the Trust or to the Official Solicitor. I approach it, as I say, on the basis that the family accurately and clearly articulate the views of VT and do so with integrity.
- A person has the capacity to decide for himself. Implicit in that, is the making of bad decisions, of which we are all guilty. The Mental Capacity Act provides that a person is not to be treated as unable to make a decision simply because he makes an unwise one. Both at common law and under the Act, those who act or make decisions on behalf of a person who lacks capacity, as here, must do in that individual's best interest. How, then, is it to be determined whether a particular treatment is or is not in the best interest of the patient? The Act gives some limited guidance but it is limited and not intended in any way to be prescriptive. S. 4 relevantly provides as follows:
"(2) The person making the determination [for the purposes of this Act what is in the person's best interests] must consider all the relevant circumstances and, in particular, must 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 - … (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).
(8) The duties imposed by subsections (1) to (7) also apply in relation to the exercise of any powers which - … (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."
- There is, of course, huge emphasis, in the Act and in the case law that preceded the Act, upon the patient as an individual - a person with his own values, likes and dislikes. The emphasis is always upon considering the person 'in the round' but beyond that, the Act gives no further guidance. Such guidance as is available is in the Mental Capacity Act code, which deals with life-sustaining treatment. It is important to read these relevant paragraphs as a whole:
"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 were 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.
5.33 Importantly, section 4(5) cannot be interpreted to mean that doctors are under an obligation to provide, or to continue to provide, life-sustaining treatment where that treatment is not in the best interests of the person, even where the person's death is foreseen. Doctors must apply the best interests checklist and use their professional skills to decide whether life-sustaining treatment is in the person's best interests. If the doctor's assessment is disputed, and there is no other way of resolving the dispute, ultimately the Court of Protection may be asked to decide what is in the person's best interests."
- The case advanced by Mr Hockton, on behalf of the family, emphasises the sanctity of life and the extent to which a prolongation of life - which, for the reasons I have already referred to, he sets at 12 months - may be deemed as a benefit by the patient himself.
- The patient's wider best interest, including the value attached to family life.
- The extent to which the patient would regard the proposed treatment himself as beneficial or harmful.
- Any wishes, feelings and beliefs of the patient and his family, including their religious beliefs.
- Any improvement in the patient's condition and the prospect of further improvement.
- Any harm, pain or suffering caused by the proposed treatment and whether the patient would consider that this outweighed any potential benefit, in terms of prolongation of life.
- The extent to which it is currently possible accurately to ascertain prognosis.
- The extent to which the commissioners have regard to the correct test.
Like Mr Sachdeva, who appears on behalf of the Trust, I find Lady Hale's own views at paragraph 42 of the recent Supreme Court decision in Aintree Hospitals NHS Foundation Trust v James,  UKSC 67 in relation to the first instance facts of that case to have a really quite remarkable resonance to the facts that emerge here. At paragraph 42, Lady Hale states as follows:
- Any benefit of the treatment provided so far, including CPR and ITU.
"That is not to say that I would have reached the same conclusion as the judge in relation to each of these treatments -….'There was no question of withdrawing clinically supported nutrition and hydration or ventilation or other supported breathing or, by the time of the hearing, intravenous antibiotics. The treatments in question were all highly invasive. I might have drawn a distinction between them. Invasive support for circulatory problems had been used successfully in the past and the patient had rallied. Renal replacement therapy had not so far been needed and so it might be difficult to predict both its effectiveness and its impact upon the patient's overall wellbeing. Cardio-pulmonary resuscitation, on the other hand, although it had been used successfully in the past, is designed to restart a heart which has stopped beating or lungs which have stopped breathing, in effect to bring the patient back to life. I can understand why the judge thought it premature to say that it should not be attempted. But given the particular nature of this treatment, given its prospects of success, and particularly given the risk that, if revived, the patient would be even more seriously disabled than before, I would probably have declared that it would not have been in the patient's best interests to attempt it. But if the judge has correctly directed himself as to the law, as in my view this judge did, an appellate court can only interfere with his decision if satisfied that it was wrong. In a case as sensitive and as difficult as this, whichever way the judge's decisions go, an appellate court should be very slow to conclude that he was wrong."
There is, here, no question of withdrawing clinically supported nutrition. Here bag and mask resuscitation is actively contemplated and specifically excluded from the declaration sought. In this case, I think that I must, as Lady Hale suggests, analyse the individual procedures separately.
CPR, or pulmonary resuscitation, has, during the course of these proceedings, already been deployed. As Professor Swash clarified in his evidence and as Dr Adams makes very clear in his report, CPR comprises two distinct components. Its purpose is to facilitate the flow of blood and oxygen to vital structures, such as the brain and heart. If VT were to deteriorate to a point where his heart stopped, that would, of course, interrupt the flow of the blood to the brain, for whatever period of time. This brain is already damaged – it would further be damaged, inevitably. That VT would, therefore, be more seriously disabled than before is also inevitable. The only question is as to what degree. On any view, that treatment is ineffective, not of benefit to the patient, likely damaging and, therefore, compromising of his dignity. Even factoring in VT's wishes to the prominent degree that I have, this would, I am completely satisfied, not be in his best interest – it would not merely be permitting him to suffer as he might wish but it would also require others actively to harm him for no medical reason or benefit. That, in my judgment, is not only medically contrary to his best interest, it is difficult to reconcile with the underlying theological premise that the family advances. It can hardly be right to expect doctors to cause pain for no justifiable medical reason other than to accommodate the religious or other beliefs of a patient. It would require those who, through medical training and personal beliefs, want to help the patient, to do the exact opposite – that would be neither ethical nor lawful in my judgment.
The second component of CPR is pulmonary. Respiratory arrest can be caused in two ways. It may be caused by obstruction of the airways, which, in VT's case, would be most likely secondary to displaced or blocked tracheostomy. That blockage or displacement might cause acute discomfort and even distress. The family seems clear that VT experiences distress from time to time – his daughter related examples powerfully in evidence – and the doctors also see it as consistent with VT's present state. On these occasions, it would be entirely reasonable to perform basic manoeuvres, such as suctioning the tube, as Dr Adams reports, or replacing it and, indeed, to perform what Dr Adams calls, "…brief manual ventilation to relieve obstruction." That sounds suspiciously like CPR by another name. I am concerned that the declaration sought by the Trust might give the impression to the clinicians that such procedures, which would be both necessary and humane, were regarded as unlawful and should not be utilised. In addition, the risks attendant on pulmonary resuscitation are of a different complexion and less acute, particularly regarding the impact on brain function. We know that CPR has already been deployed in these proceedings for respiratory reasons, without compromising VT's general welfare or dignity. That said, gradual deterioration in respiratory effect, consequent on infection, fatigue, analgesia or simple and inevitable decline, is, again, a different proposition. In my view, there is scope for pulmonary resuscitation, to the extent that I have referred to it, and for these purposes only. Though Mr Hockton has not marshalled this point as part of his case, Mr Sachdeva, in what, if I may say so, has been a very measured presentation on behalf of the Trust, foreshadowed it in his closing submission. He foresaw that I might wish to prohibit CPR only in the event of cardio collapse but that, in my view, would be too blunt; moreover, it seemed to me to be likely to cause further dispute and perhaps a return to this court. Having analysed it in this way, I believe that it is perfectly possible to refine that aspect of the declaration sought, to accommodate the distinction that I have set out.
Finally, it is, I think, clear, from my review both of the medical and lay evidence, that to require the team to treat VT in Intensive Care would be wholly futile, in that it would be:
(i) Likely to cause distress, discomfort and probably pain.
(ii) Unable to achieve any positive medical benefit.
(iii) Life-threatening, in and of itself.
(iv) To further compromise VT's vital organs, and therefore medically harmful.
Again adopting the analysis of Lady Hale in Aintree it would not be prolonging life – it would, in effect, be restarting a life which has stopped. The family may wish to look at it in these terms when they reflect on these issues. I hope that when death comes for VT, whenever that may be, it will come peacefully and that he will be with his family.
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