Whittington Health NHS Trust v XY & Ors

The Applicant Trust seek declarations concerning XY, a 66-year-old man, who is in a state of prolonged disorder of consciousness. After extensive investigations, second opinions and independent expert evidence (solicited in these proceedings), the Trust have concluded that continued ventilation and clinically assisted nutrition and hydration (CANH), is no longer in XY’s best interests. They seek declarations to that effect. Though I will return to the medical evidence, in detail, below, it is important to note that all the experts support the conclusion that drives this application.

XY was admitted to hospital by ambulance on the 18^th December 2023. He had severe pneumococcal community acquired pneumonia. XY had an extensive history of poorly controlled type 2 diabetes mellitus, hypertension, hypercholesterolaemia and ischemic heart disease. He had a coronary stent inserted in 2016.

Whilst in hospital, XY suffered a cardiac arrest. Dr A, Professor of Intensive Care Medicine and Consultant Intensivist, told me in evidence that had this occurred in the community, it is highly unlikely that XY would have survived. Resuscitation attempts were ultimately successful in restoring spontaneous circulation but XY sustained multi-organ failure over the subsequent days with renal, hepatic, gastro-intestinal and cardiac dysfunction, requiring intense support, including renal replacement therapy in the form of diafiltration. In the weeks that followed and as brain swelling reduced, there was progressive improvement and stabilisation of organ function, including kidney. Unfortunately, as XY was weaned from sedation, it became all too clear that there was a significant hypoxic ischemic brain injury, manifest as seizure activity and an absence of any meaningful response to environmental stimulation.

The treating clinicians were also able to be effective in managing the seizure activity, which responded to anti-epileptic medication. However, as XY has emerged from coma, in consequence of the withdrawal of sedation, the treating medical team has formed the clear opinion that he does not demonstrate any features of awareness or volitional purposeful activity. This condition has been, historically, categorised as a ‘persistent vegetative state’. It is a term which has been used in the case papers and in evidence, it excites a great deal of distress in families of patients in this condition. I watched as this family recoiled from the term. It has a dehumanising connotation which is, in my view understandably, perceived as offensive to the dignity of the patient. Both Professor Wade and Dr A are clear that it is not a term that illuminates anything diagnostically. These days, the consensus amongst the medical profession is that prolonged disorder of consciousness (PDOC) is a continuum which it is unnecessary, artificially, to demarcate by labels. XY, in the view of all the doctors involved in his treatment, is at the lowest point on the spectrum of prolonged disorders of consciousness. That is all they are required to say on this point. Given the wide medical consensus that I have referred to, the time has surely come to consign the phrase, “persistent vegetative state” to the past.

XY’s children believe that their father has a greater level of awareness than do the doctors. They point to the fact that they spend many hours with him and the doctors see him much less frequently. They have taken videos which they believe demonstrate XY’s capacity to respond to command by making finger movements. XY undoubtedly has the capacity for reflex reaction but the doctors do not believe that he has any sentient neurological functioning. It is important to emphasise the respectful, courteous relationship between the family and the treating clinicians. Both have spontaneously and authentically paid tribute, each to the other, recognising the sincerity of different perspectives as to where XY’s best interests lie. Ultimately, XY’s family hope for a degree of recovery that the medical evidence simply cannot sustain. They go further than this however, they believe in the capacity of Allah to perform miracles. They further believe that questions of life and death lie entirely in the hands of Allah and not a doctor or a judge.

Islam, as the family recognise, incorporates a wide range of interpretive theology. Their faith and belief however, does not embrace an alternative view, namely that XY, as the sentient person and father they knew, might already have been lost to them, at or around the time of the cardiac arrest. XY’s present situation is now reduced to what has been described by Dr Bell, a Consultant in Intensive Care and Anaesthesia, instructed on behalf of the family, as a “physical physiological existence, maintained solely by continuous medical and nursing intervention”.

Dr Bell visited XY as recently as 5^th July 2024 i.e., less than a week ago. He records the following observations in his assessment, which are set out in his report. Though I will not replicate them in full, I do consider it necessary to set them out extensively:

Dr Bell was very careful to incorporate family members into his assessment, specifically to evaluate whether their presence generated a greater level of responsiveness:

Dr Bell concluded that A was at “an extremely low point on the spectrum of prolonged disorders of consciousness (PDOC)” which he considered to be entirely compatible with the hypoxic ischemic insult to the brain and the compromised cerebral perfusion around the time of the cardiac arrest on 18^th December 2023. He further considered that the multi-organ dysfunction, that I have set out above, contributed to what he refers to as the “extensive neuronal death”, identified on the MRI scan on 16^th January 2024.

Both Dr Bell and Dr A emphasised that XY’s health was already compromised to some degree by the time he suffered the cardiac arrest in December. It seems likely that XY already had a degree of cerebrovascular disease, attributable to a very heavy smoking history, hypertension, poorly controlled diabetes mellitus and existing coronary artery disease. Dr Bell considered that this history contributed to the extent of the neuronal death and has, in turn, compromised any potential for recovery of neurological function. Dr Bell was clear that XY is extremely unlikely to make any progression on the spectrum of PDOC and will remain in his present condition. The prognosis for his survival i.e., as opposed to neurological recovery, is entirely predicated on the provision of sustained treatment in the form of assisted ventilation, clinically assisted nutrition and hydration and control of the underlying disease. He is also vulnerable to infective complications generated by the various tubes attached to him which, inevitably, breach the epithelial barrier.

The family have shown the experts several video recordings which they believe to reveal evidence of a greater degree of consciousness than the doctors contend. The improvements in XY’s general organ functioning, following the receding encephalopathy and returned perfusion, have also resulted in XY exhibiting reflexive responses which he was unable to initially. Understandably, the family have interpreted this as an improvement in XY’s general condition. However, all the doctors are clear that this is of no neurological significance, the responsive reactions being entirely generated by the spinal cord. The increased profusion has also improved organ function which is an improvement. However, Professor Wade is also clear that on the video recordings he has seen, the movements demonstrate a reflex response of no neurological significance, generated entirely within the spinal cord.

The consensus amongst all the doctors, both the instructed experts and the treating clinicians, is that XY’s prolonged disorder of consciousness, in consequence of his profound neurological injury, is irreversible. Dr A, whilst clear that XY is probably beyond pain, given his negative responses to pain tests and EEG results, nonetheless emphasises the burden of his ultimately futile treatment. XY has an endotracheal tube and mechanical ventilation to support his breathing. He receives nutrition and hydration via a nasogastric tube. He has no effective cough and, in consequence, requires very regular deep suctioning of his bronchi. In addition, he requires to be turned frequently to avoid pressure sores. He is provided with intensive skin management. It is a testimony to the nursing care that he has remained largely free from bedsores since his admission eight months ago, though I note that the situating of the endotracheal tube has created sores on his cheeks. The suctioning carries with it unavoidable micro aspiration which has generated infections. These have responded to anti-biotic treatment. XY is colonised with klebsiella, pseudomonas and c difficile. This has caused episodic bouts of vomiting and diarrhoea. XY is doubly incontinent. He also suffers from increased contractions to the limbs, which is an inevitability due to his inability to move.

For reasons which will become clear below, there has been a good deal of focus on XY’s ventilatory support. Dr A has told me that XY has relatively low dependence on it, mainly relating to his apnoeic episodes. Though it is impossible to be certain, Dr A is reasonably confident that A might manage to breathe unsupported for a period of time, possibly measured in months, if provided with nutrition and hydration.

Professor Derrick Wade, Consultant in Neurological Rehabilitation, has provided three reports and visited XY on two occasions, the last as recently as the 4^th July 2024. He has also reviewed the videos taken by the family and attended at court. Given the high degree of medical consensus amongst all the doctors involved, which I think can properly be described as unanimous, I invited Dr A to give evidence with Professor Wade having the opportunity to comment as the evidence proceeded (the procedure known as “hot tubbing”). Professor Wade agreed that XY’s organs, particularly his kidneys, have demonstrated recovery and for the reasons that Dr A indicated. He was, I think, really addressing his remarks to the family when he emphasised that unlike the other organs, the brain does not have capacity to recover. This is a concept that many families struggle with. The damaged cells are nerve cells (brain cells) known as neurons and neurons cannot regenerate. Having regard to the extensive brain injury in this case, Professor Wade concluded that the family’s hope that XY could be given further opportunity to “recover” was entirely forlorn. Though I will turn to the family’s evidence in greater detail, I would simply note, at this point, that, on an intellectual level, each of them understands the medical opinion and respects the integrity of it.

Professor Wade considered that continuing ventilation, artificial nutrition and hydration was entirely contrary to XY’s medical best interests. He expressed himself in clear terms in his report: “the only opportunity that [XY] is being given is for a prolonged period of dying”. That sentence is forthright and uncompromising. I consider, however, that Professor Wade is right to express himself in this way. There is a tendency, driven entirely by sensitivity to the family, to wreathe difficult concepts in emollient language and, sometimes, euphemism. The danger in this, I am afraid, is that it risks generating confusion, misunderstanding and letting in the inevitable human tendency to filter only the perceived positives.

Professor Wade agreed that the video recordings demonstrated reflex and not neurological response. They are “characteristic of myoclonic jerk, typically seen after anoxic brain damage”. Even the resting of a hand on XY’s chest, he said, generated a reflex and not an emotional response. The ‘lachrymation’ referred to by Dr A, perceived entirely understandably by the family as tears, responsive to either distress or happiness, he told me is also a well-recognised reflex response. Professor Wade agreed. In his second report, Professor Wade proffered a more detailed analysis of XY’s experience of pain:

Professor Wade is plainly not describing pain in the way that it would be experienced by a sentient patient. His description however, on the face of it, would appear to go further than Dr A’s view that XY is “probably” unable to experience pain. However, on a more detailed analysis, I do not think they are saying anything significantly different from each other. Dr A said that it is always important to have the humility to acknowledge the limitations of medical knowledge. In this sphere i.e., understanding the occurrence and/or the nature of pain, he recognised that there is a dimension in which doctors simply cannot be sure. In my view, the best that can be said is that A probably cannot experience pain but if he can, it is likely to be “in the moment” and qualitatively different from pain as it is generally understood. In endeavouring to be precise, I emphasise that I do not, in any way, minimise the significance of this possibility. Indeed, I recognise that it weighs heavily on all concerned with XY, not least his family. Again, in wholly unambiguous terms, Professor Wade considered that both ventilation and CANH should be stopped: “continuing with any of the interventions will prolong his life and leave him experiencing potential pain daily, all without benefit”.

It is unnecessary for me to review the medical evidence more widely than the summary provided above. Professors Wade and A and Dr Bell eloquently articulate the consensus. There can be no doubt that from the medical perspective, continuation of the present treatment is contrary to XY’s best interests. Dr A, who has forged a close and mutually respectful relationship with XY’s family, considers that if the court were to take a contrary view of the Trust’s application, he would feel obliged to stand back from treating XY. He would be unable to reconcile such a course with his clinical ethics, he would regard it as doing harm with no prospect of benefit. I emphasise that he stated his position diffidently and self-deprecatingly. He also told me that there would be other clinicians who would be prepared to take a contrary course if the court authorised it.

Some speculate why Judges, in cases such as this, continue to describe the decisions as challenging or difficult, when the medical evidence establishes such a definitive conclusion in respect of P’s best interests. The short answer is that it is not, ultimately, the doctors or experts who determine cases. Judges are required to survey a much broader canvas of P’s life than the treating clinicians are able to. Central to this is the obligation to analyse the available evidence of P’s beliefs, faith and the code by which he or she lived their life, in order to establish, with as much clarity as possible, what they might have wanted, by way of treatment, if they found themselves in this parlous condition. Every case is inevitably highly fact specific. The concept of ‘best interests’ is far wider than the purely medical.

Though the application of it, in any individual case, may be difficult, the applicable law is clear and, broadly, settled.

There is no evidential issue between the parties, nor could there be, that XY acks capacity to take his own decisions in relation to medical treatment. The presumption of capacity under the Mental Capacity Act 2005 (MCA) has therefore, inevitably, been displaced in this case. The court is consequently required to consider what is in XY’s best interests having regard to Section 4 MCA 2005, which reads as follows:

The MCA 2005 Code of Practice provides:

The clearest explanation of the test remains that of Baroness Hale in Aintree University Hospital NHS Foundation Trust v James [2013] UKSC 67:

XY’s rights, protected by the European Convention on Human Rights, are engaged. In the present context, the relevant rights are established by Article 2 (the right to life), Article 3 (protection from inhuman or degrading treatment) and Article 8 (the right to respect for a private and family life). As the ECtHR recognised in Burke v UK [2006] (App 19807/06), [2006] ECHR 1212:

In this context in Aintree University Hospitals NHS Foundation Trust v James (supra), at [22], Baroness Hale highlighted the following:

These sentiments were re-stated in An NHS Trust v Y [2018] UKSC 46 at [92], Lady Black delivering the judgment of the court:

Though the medical profession and the family have very different opinions as to the future treatment likely to be in XY’s best interests, they have, in the most difficult of circumstances, forged a genuine, courteous and mutually respectful relationship. In this achievement, they have conferred dignity on XY’s situation which, for some of the reasons I have referred to above has, on occasions, been tested.

XY has seven children and thirteen grandchildren. I have heard from four of his children and his wife. All the children have, at some point, been in the court room and also his youngest grandchild, still a baby, who has been impeccably behaved. XY is and has been a remarkable man. He has had an unslakeable thirst for life and a striking generosity of spirit. He was, for many years, a chef who thoroughly enjoyed his work. He took pride in the quality of the dishes he prepared. He was fastidious about the quality of his food and grew his own vegetables from an allotment which he carved from unpromising ground over many years. Many of the vegetables he grows are seeds that he propagates himself, having bought them abroad, usually in Bangladesh. The food he prepares for his family is a manifestation of his love for them. He was aware of each of his children’s favourite dishes and would prepare them, unbidden, when he thought they were needed. His delight in his thirteen grandchildren has been every bit as great as that in his children.

XY’s extraordinary generous and kind disposition was not confined to his family. His local community was central to his life and he was quick to identify and help those in need. He attended the mosque daily, frequently five times per day. His Islamic faith was profoundly important to him. I sense that his prayers were for others rather than for himself. He also did important humanitarian work providing water to remote villages in Bangladesh. It is not without poignancy that one of the central issues in this case is whether he now should be treated with hydration.

XY’s son, M, gave the main evidence on behalf of the family. He gave his evidence orally in response to questions, the other family members read from carefully prepared letters. The family is hardworking, articulate, and suffused with the same ethical principles that they have told me about in their father. It bears repetition that Dr A has, on a number of occasions, paid spontaneous and fulsome tribute to their kindness, not only towards A but more widely and particularly to the nursing staff. They have won the affection and respect of all those caring for XY.

It is important that I record their views as accurately as I can in this judgment. Inevitably, not all their thoughts are reasoned or, indeed, entirely consistent. They are a family who are grieving. BC was sometimes ambushed by his emotions as he tried to tell me about the code by which his father lived his life. On the last day of the hearing, XY’s wife came into the witness box to read a statement to me. She does not speak English fluently and had not intended to give evidence. M had discovered his mother writing a letter at seven o’clock that morning. She told him that she had decided that she wanted to write to the Judge. It was resolved that she would come into the witness box, read her own letter and M would translate it for her. For both, it was an emotional experience. The grief of XY’s wife was almost palpable. If I may say so, sad though XY’s circumstances are, he is fortunate to be greatly loved, not only by his extensive family but, as I have been told, by his wider community.

XY’s daughter (DE) told me that the course proposed by the doctors would be contrary to Islamic faith, as understood by her father. She told me that the Quran decreed that “he who kills a man, kills mankind; he who saves a man, saves mankind”. This is also present in the Torah and has resonances in the Bible. Thus, it is a facet of each of the Abrahamic faiths. All the family share this belief. By this I mean that each of them told me that A would wish to continue in his present circumstances, even if in pain, because he would have known that he would continue to provide succour to his family. I have come to the very clear view that whatever their understanding of the medical evidence might be, the loss of A is unbearably painful to this family and dominates their response. F told me that if she were in XY’s position, she too would wish to endure similar circumstances to comfort her own children by her continued presence. I accept the sincerity of her statement and consider it reflected her honest position. It is argued by Mr Mant, Counsel on behalf of the family, that F’s reasoning is entirely consistent with the way XY has lived his life, putting his family first at every turn. I find this to be a sensitive and well-reasoned submission.

Each member of the family has, as I have foreshadowed, a strong belief that XY’s reactions demonstrate a level of neurological functioning that the doctors have failed to recognise and appreciate. Their belief in this is deeply rooted and entirely honest. For the reasons I have already said, it is irreconcilable with the medical evidence. The most up to date EEG (Electroencephalographic evidence) was 28^th February 2024 i.e., nearly five months ago. Dr A considered this was an important piece of evidence in recording neurological and cortical response. I asked Ms Kohn, Counsel on behalf of the Applicant Trust, if it might be possible to arrange a further EEG. I am extremely grateful to them that they were able to organise it and for a report on it by Dr B, Consultant Neurophysiologist, almost immediately. Dr B reached the following key conclusions:

I entirely recognise that this report was not strictly necessary given all I have said above, in respect of the medical evidence. The conclusions illustrate that adaptive changes are not evidence of improvement or deterioration of neurological functioning. Nonetheless, the family is essentially challenging the medical view of XY’s neurological function. If the responses they see are more than merely adaptive, as they believe, then that must logically point to a greater degree of neurological functioning than the evidence otherwise suggested. For this reason, perhaps mainly for them, I considered it to be worthwhile to obtain this final piece of evidence. It is important to recognise, as Professor Wade emphasises, that the EEG report does not provide evidence as to whether A has changed significantly or whether any change is in a positive or negative direction. The EEG reveals no change. Professor Wade observes “behaviourally [XY]’s level of response is so low that change for the worst, is probably not detectable”. Neither does Dr B’s report give definite evidence of XY’s awareness or responsiveness. The EEG does not provide evidence of this. All that can be said ultimately is that the EEG does provide good evidence of how severely limited XY’s level of behavioural responsiveness is. Finally, Professor Wade notes:

One option that was explored at great length was withdrawal of ventilation but reintroduction of CANH after a period of intermission, required for medical reasons. I need not burden this judgment with those reasons. There is agreement that XY would not be resuscitated in the event of cardiac arrest. It was suggested that alongside this, there would be no antibiotic treatment for almost inevitable infection, consequent upon micro aspiration. I should say that this second option was contemplated by the family but I did not sense any real enthusiasm for it. Its primary objective was centred upon what XY might have wanted in the circumstances that he found himself. His inevitable death on this alternative plan would not be in consequence of a particular action by man but more easily reconcilable with his Islamic beliefs. It was not constructed as casuistry; it was a sincere endeavour to reconcile the severity of XY’s medical situation with the sincerity of his beliefs. Many people would recoil from XY’s present circumstances and profoundly wish to be released from them as quickly as possible. Where those wishes are identified, the Court of Protection is vigilant to promote the individual’s autonomy. However, the Court is similarly obliged to promote the autonomy of those whose views many might disagree with. The essence of autonomy is the promotion of an individual’s right to take their own decisions. The important proviso is whether those decisions are lawful or whether they require others to act in a way that represses their own autonomy, morally and ethically.

The ‘alternative plan’ is one that I have considered very carefully, as will be obvious to the family and indeed, to all involved in the case. Ms Paterson KC, Counsel on behalf of the Official Solicitor, highlighted an important dissonance in the reasoning underpinning the alternative plan. In their assertion that XY would have preferred to remain in this profound disorder of consciousness, from which their lies no recovery, the family have attributed to him a degree of awareness which, I have found, is not supported by the evidence. Accordingly, their view that he would choose his present situation to afford comfort to them is based on their false premise of what his situation actually is. The severe brain stem dysfunction that XY has sustained is consistent with the view that perhaps even basic pain sensations may not be experienced or perceived. The continuing lack of any detectable response on the EEG is also supportive of this. Thus, in a very real sense, A is no longer there for his family. Grief, by its very nature, sadly, sometimes alters both reasoning and perception.

Having heard so much about the man XY has been, and listened to the powerful tributes paid to him, it is clear to me that the code by which XY has lived his life is predicated on principled beliefs. Those principles incorporate honesty, integrity, duty and love of his family, as well as humanity more generally. The ‘alternative plan’, as Ms Paterson identifies, is predicated on an inaccurate assumption. The responses that the family believe they see are misinterpretations. They superimpose upon XY, that which he cannot achieve or experience. The distortion of these relationships, at the end of XY’s life, especially in such a close and loving family, runs counter to everything that each of them believes in. Of course, I include XY centrally in this. It does not sit in any way comfortably with the man he has been or the integrity that he has shown throughout his life. I do not believe, from all I have been told, that he would wish those who he has loved to believe that he was still there with them, in any meaningful sense, when the awful truth is that he no longer is.

I also agree that burdensome treatment of the kind contemplated here, can only be truly ethical where it can achieve benefit for the patient. Here, the treatment is futile. Dr A believes that XY is no longer receiving treatment in any real sense of the word i.e., it is not treating any condition. In short, it generates harm, not benefit and is irreconcilable with his professional oath. I entirely understand why he has come to that conclusion and for my part, in the light of my analysis above, cannot see how he could have arrived at any other. I would emphasise that his commitment to XY and his family has been unfailing.

Accordingly, and with the deepest of sympathy to the family, I make the declarations sought by the Trust.