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You are here: BAILII >> Databases >> England and Wales High Court (Family Division) Decisions >> Guy's And St Thomas' NHS Foundation Trust v A & Ors [2022] EWHC 2422 (Fam) (28 September 2022) URL: https://www.bailii.org/ew/cases/EWHC/Fam/2022/2422.html Cite as: [2022] EWHC 2422 (Fam) |
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strictly
preserved. All persons, including representatives of the media, must ensure that this condition is
strictly
complied with. Failure to do so will be a contempt of court.
Strand, London, WC2A 2LL |
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B e f o r e :
____________________
Guy's and St Thomas' NHS Foundation Trust |
Applicants |
|
| - and - |
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| (1) A (By his Children's Guardian) (2) F (3) M (4) A Local Authority (Intervener) |
Respondents |
____________________
Neil Davy (Instructed by Duncan Lewis) for the First Respondent
Victoria Butler-Cole KC and Arianna Kelly (instructed by Dawson Cornwell) for Second and Third Respondents
Kieran Pugh (instructed by Local Authority) for the Intervener
Hearing dates: 26-27 September 2022
____________________
Crown Copyright ©
Mr Justice Poole :
stabilised
there and then transferred to the Paediatric Intensive Care Unit (PICU) at the Evelina Children's Hospital (Evelina) in central London. The records indicate that he was in cardiac arrest when the paramedics arrived and despite resuscitation attempts his brain was
starved
of oxygen for approximately 32 minutes. On admission to the Evelina, A had fixed dilated pupils. He was neuro-protected for three days, meaning that he was kept cool and effectively anaesthetised. An MRI scan on 14 June 2022 showed "hypoxic ischaemic brain injury, multiple intracranial subdural and subarachnoid haemorrhages and spinal cord abnormalities". He had therefore suffered a primary injury of intracranial bleeding and, secondary to that, severe hypoxic ischaemia.
stem
testing was performed on 17 to 19 June 2022 and death was declared at 1315 hours on 19 June 2022. A's parents would not consent to the discontinuation of mechanical ventilation and requested a second opinion. Two doctors from a different NHS Trust in London performed brain
stem
tests on 22 June 2022 and confirmed the declaration of death.
Still
the parents would not consent to the withdrawal of ventilation and so on 27 June 2022 the Trust made an application to the High Court for a declaration that A was dead. An initial directions hearing was held before Peel J on 28 June 2022 but a few days later on 1 to 3 July 2022 A was seen to attempt to breathe. The Trust, swiftly rescinded its own determination of brain
stem
death and applied to amend its application to seek, instead, a declaration that it was in A's best interests to withdraw treatment. At a hearing before Hayden J on 13 July 2022 permission to amend was given and a directions order made including the grant of permission to the parents and the Guardian jointly to instruct an independent expert witness – see
Guy's
and
St
Thomas'
v. A, B, C [2022] EWHC 1873.
i) In June 2022 A was found to have met the tests for brain
stem
death but in early July 2022 he
started
intermittently to breathe. The tests for brain
stem
death are no longer met but had the court determined the Trust's initial application on the evidence available before 1 July 2022, it may well have declared that A was dead.
ii) Legal proceedings have been protracted by the amendment of the application and then the appeal. This is the second full hearing of the Trust's application for a declaration that it is in A's best interests to withdraw mechanical ventilation.
iii) Investigations into A's injuries have raised concerns that they may have been inflicted non-accidentally. The police arrested and then bailed the parents. An interim care order has been made in favour of the Local Authority which has intervened in this application.
i) I have to decide the application that is now before the court. The reliability of the brain
stem
death testing is not an issue for determination by this court. Nevertheless, the history of a clinical determination of brain
stem
death which has subsequently been rescinded is potentially relevant to the court's assessment of the current medical evidence and to the parents' views that the current medical consensus may also be proved to be wrong.
ii) Although Hayden J carried out a full assessment of A's best interests, the Court of Appeal has set aside his decision to refuse an adjournment. In the circumstances I hear this application afresh, uninfluenced by the determination that Hayden J made. In any event, I have received further evidence.
iii) Concerns that A's injuries are non-accidental will not affect my determination of what is in his best interests. Investigations are continuing, no admissions have been made and nothing has been proved. I cannot assume any particular outcome from those investigations. I shall assess A's best interests, including giving weight to his parents' views, as I would have done had no suspicion of non-accidental injury been raised. Findings as to the cause of A's injuries will be for others to make in criminal or public family law proceedings.
staff
at the Trust for enabling the visit. As they have been since his admission to the PICU, F and M were at A's bedside. A lay absolutely
still,
beautifully dressed in bright colours.
Background
strong
and healthy. A was seen regularly by the midwife and health visitor and was noted to be "generally well". He was reviewed for his eight week check up and immunisations on 8 June 2022 with no concerns. Then, at about midday on 10 June 2022, F found A unresponsive and A was later admitted to the PCIU at the Evelina in the circumstances set out above.
stimuli,
and no seizures. This means that there has been no detectable electrical activity from A's brain for over two months.
still
a very high pressure and the truncal rigidity continues. It prevents A from being able to be lain prone.
stem
dead followed application of the Academy of Royal Medical Colleges' document "A code of practice for the diagnosis and confirmation of death." There is no dispute that the criteria for "diagnosing" A's brain
stem
death set out in this document were met. The correct tests were performed. The correct procedures were adopted. There were no errors made by the clinicians who followed the code of practice. On 22 June 2022 critical care consultants from another London NHS Trust reached the same conclusions as those at the Applicant Trust that A was brain
stem
dead. However, at the beginning of July 2022, A
started
breathing and the declaration of death by the Trust was immediately rescinded. A would not meet the criteria for brain
stem
death now. It is reassuring to know that the application of the code to young babies such as A is being actively considered. I understand there to have been a few case
studies
reported worldwide in which breathing followed determinations of brain
stem
death in adults as well as children. I also understand that the onset of breathing did not herald good recovery and that the prognoses remained bleak for all those patients. Nevertheless, it is understandable that F and M should question the reliability of confident
statements
about A's prognosis given that they were told that their son's brain
stem
had died but he later
started
intermittently to breathe independently.
started
breathing. This was rhythmic and sustained although insufficient to consider extubation. This must have seemed to the parents at the time to be a miracle. Very sadly however, A's breathing has since deteriorated. On 19 August 2022 Dr Z took A off the ventilator and placed A on the anaesthetic circuit ensuring he was fully oxygenated. He made three breaths in four minutes. On repeating the exercise on 14 September 2022 A took three gasps (not breaths) in five minutes. Dr Brierley conducted similar exercises. On 28 July 2022 he disconnected the ventilator and noted a sustained respiratory effort by 2.5 minutes but insufficient to sustain life and therefore to consider liberation from mechanical ventilatory support. On 23 September 2022, Dr Brierley disconnected A again and noted only two spontaneous breaths in three minutes, "far fewer than when I saw him in July". Although Dr Z noted gasps rather than breaths, the trajectory of deterioration in breathing is common to both her and Dr Brierley's observations.
stable
at about 120 beats per minute but there is markedly reduced variability which is a poor prognostic factor.
staff
and his parents regularly apply lubricant to his eyes.
stimuli
(elbow pressure). As noted the EEGs do not show any electrical activity in response to
stimuli.
state
is therefore not attributable to sedation.
staff
at the hospital. Dr Brierley describes the care provided to A as exemplary.
Treating Clinicians
statements
and her oral evidence at the hearing she showed great compassion for A and his family but she is clearly deeply troubled by the continuation of ventilation in this case. In that regard she spoke on behalf of the medical and nursing personnel at the Evelina who feel "moral distress" by reason of having to provide care that they consider to be unethical in the circumstances. Dr Z explained that A's case had not been referred to the Trust's ethics committee because it was not considered a borderline case requiring ethical guidance. The reasons why Dr Z and her colleagues consider that it is unethical to continue ventilation of A is because they consider that (i) it is burdensome to him to undergo interventions necessary to keep him alive such as ventilation and suctioning; and (ii) A has no prospect of any recovery – he will remain in deep unconsciousness and so whilst the interventions may prolong his life (or as Dr Z put it, prolong his death) the interventions will not benefit A.
stem
dead three months ago.
structures
and the upper regions of the cervical spinal cord. She examined A on 15 September 2022: his pupils were fixed and dilated as they have been since admission to the PICU on 10 June 2022. Corneal and oculocephalic reflexes were absent. Upper and lower limbs were flaccid and reflexes were absent. Neck, chest wall and abdominal muscles were rigid. There was no response to
stimuli
– visual, touch or auditory – and there were no spontaneous movements. Dr Y said that the clinical findings are entirely consistent with the EEG investigations and MRI scans: they demonstrate a catastrophic brain and brain
stem
injury with no possibility of repair or regrowth of the brain tissue which has been damaged and lost. Dr Y advised that there is no intervention or medication that could be offered to promote recovery. She did not think it possible that there could be any return to consciousness.
Clinicians Giving Second Opinions
still
has some brain
stem
function but that the clinical evidence, the MRI scans, and EEG establish that "A has global injury. All his functions - to see, to hear, to feel, to respond, to allow muscles of arms and legs to move, to achieve some sensory input - are all lost." He said further,
" The [most recent] MRI scan supports the findings of the previous scans showing global injury affecting the entire cerebrum and shows changes which are cystic encephalomalacia reflecting the death of brain cells which the body converts into liquid and hence a cyst likestructure
forms. The dead part of the brain liquifies meaning there is no viable brain there."
He
stated
very clearly that these changes are irreversible. Neither treatment nor time will lead to recovery or regeneration of dead brain tissue.
stem
testing prior to when A
started
to breathe, and they reached the same conclusion that had been reached by the team at the Evelina, namely that A was brain
stem
dead.
Independent Expert
Street
Hospital for Children. He has twice seen A at the Evelina PICU, on 28 July and 23 September 2022, producing written reports after each visit. He gave oral evidence in person at the hearing. Dr Brierley was instructed jointly by the Guardian and the parents.
i) The determination that A was brain
stem
dead in June 2022 which was rescinded when A
started
to breathe.
ii) His own expectation following his first visit to A, that in the absence of improvement, ventilation would progressively worsen, leading to death from organ system failure. In fact, A's condition and his ventilation requirement has, in Dr Brierley's opinion, effectively remained the same and he told the court in oral evidence that he could not now predict how long A might be kept alive on ventilation, although his life is limited.
stem
testing could have "confirmed" neurological death when, a fortnight or so later, A was able intermittently to breathe. The first was that whereas in a person with a closed skull severe brain swelling will cause the brain to be pushed downwards into the hole at the base of the skull (brain herniation or "coning"), for a baby who has open fontanelles (or for an adult who has undergone a craniectomy) the swelling can expand the brain in different directions. Thus, when the swelling subsides, damage to
structures
such as the medulla (which controls breathing) may not be total or permanent such that breathing may re-
start.
The second hypothesis was that damage to A's spinal cord may somehow have caused reversible damage which temporarily prevented all breathing. As I understand it brain
stem
death testing for adults would require spinal cord injury to be excluded. These are merely hypotheses. Dr Brierley told the court that he has been in discussion about this case with the President of the Royal College of Paediatrics and Child Health, the Chair of the Paediatric Critical Care Society, and the Academy of Medical Royal Colleges via colleagues and that a working group has been established to clarify the "pre-conditions" before a determination of death using neurological criteria is made in a child of A's age.
stability
in A's condition over the past month, Dr Brierley said that whilst he had wrongly expected a deterioration, the fact remained that A was not capable of recovery. It does not seem conceivable that he will regain consciousness. For as long as he lives he will remain in intensive care.
stage,
after fifteen weeks in the PICU, there are no further interventions and there is no further treatment that will help A. However, Dr Brierley would not now be as confident as he was a few weeks ago that A will be likely to die within a relatively short time if ventilation were to be continued. A's life expectancy is limited but Dr Brierley would be cautious about putting any time on how long A might survive on continued mechanical ventilation. A had not suffered barotrauma despite the very high ventilator pressures. Hospital acquired infection would be likely to affect him at some
stage
- notwithstanding the exceptional nursing care he is given - but he could not say when or whether A would succumb to it.
states,
inter alia:
"3.1.3 Situations in which it is appropriate to limit treatment
The underlying ethical justification for all decisions to withhold or withdraw LST is that such treatment is not in the child's best interests. There are three sets of circumstances where it may be appropriate to consider limitation of treatment.
…
Limited quality of life: where there is no overall qualitative benefit
Considering quality rather than quantity of life is more problematic because of potential or actual differences in views of the healthcare team and children and families as to what constitutes quality of life and the values that should be applied to define it.
In some children, continuing treatment may prolong life significantly. Yet it may be in their best interests to consider limiting it if there is no overall benefit in prolonging life because of the adverse impact entailed. In entering discussions about treatment limitation it is important to acknowledge the importance of the value that the child and his/her parents place upon their life and their view of its quality for that child, regardless of disability. These discussions may arise in the context of the burdens imposed by a child's illness and/or the treatments that the child is already receiving or that are proposed, their inability to benefit from treatments, or a combination of all three.
A. Burdens of treatments
Some forms of medical treatments in themselves cause pain and distress, which may be physical, psychological and emotional. If a child's life can only be sustained at the cost of significant pain and distress it may not be in their best interests to receive such treatments, for example, use of invasive ventilation in severe irreversible neuromuscular disease.
…
C. Lack of ability to derive benefit
In other children the nature and severity of the child's underlying condition may make it difficult or impossible for them to enjoy the benefits that continued life brings. Examples include children in Persistent VegetativeState
(PVS), Minimally Conscious
State,
or those with such severe cognitive impairment that they lack demonstrable or recorded awareness of themselves or their surroundings and have no meaningful interaction with them, as determined by rigorous and prolonged observations. Even in the absence of demonstrable pain or suffering, continuation of LST may not be in their best interests because it cannot provide overall benefit to them. Individuals and families may differ in their perception of benefit to the child and some may view even severely limited awareness in a child as sufficient grounds to continue LST. It is important, here as elsewhere, that due account of parental views wishes and preferences is taken and due regard given to the acute clinical situation in the context of the child's overall situation."
The Parents
stood
in the witness box together, holding hands in support of each other. F told the court that there could be no certainties – A had already defied expectations. F said that however probable an outcome might be thought to be, there was always a margin for error. Men and women had to be humble before nature. Only Allah could decide when it is time for a person to die. Time with A was precious. He and his brother were all of F and M's world. They feel his presence and beg for time to be given to see whether he can recover. There is no need to rush to end his life now.
statements,
F and M said, "As parents, watching our son lying like this is unimaginable and the pain is beyond expressible… we have been praying and crying every second to almighty Allah for the wellness of A. We
strongly
trust and believe that he will wake up any moment…" It was an emotional experience for many in court to listen to F and M speak. They did so articulately, courteously and movingly. I was
struck
by the
strength
of their faith and the power of their hope. I saw at the hospital that a copy of the Quran lay beside A in his small bed. The parents spoke to me about him animatedly.
started
and finished their evidence by thanking all those involved in A's care. This is a case in which although there are deeply felt differences as to whether life-sustaining treatment should continue, there is no animosity expressed towards the professionals who have devoted themselves to caring for A.
still
when I saw him but he has at times shown some small movements. Dr Z and Dr Brierley explained that twitching movements are known to occur in severely brain damaged patients. F recalls that when he was a child his own ear would become hot and red whenever he was embarrassed or felt a
strong
emotion. His father had the same trait. He has noticed A's ear turning red. Dr Brierley has explained this as a known physiological response in some children with vasodilation to the earlobes leading to increased blood flow. The reddening of A's ear is not due to inner emotion but is a product of the autonomic nervous system which mediates vascular tone. Although A's head circumference has reduced – an exceptional finding in a young baby – his body has grown which the parents have taken as a positive sign. However, this is to be expected since he is receiving nutrition through his nasogastric tube. The parents have also noted some variation in the size of A's pupils. In fact, his pupils do not react to light but slight changes over time are well known to occur – it is called anisocoria – and are not an indication of recovery from severe brain injury.
Legal Principles
Sterilisation)
[2000] 1 FLR, the Court of Appeal in Portsmouth Hospitals NHS Trust v Wyatt and Anor [2005] EWCA Civ 1181 set out the core legal principles as follows:
"In our judgment, the intellectual milestones for the judge in a case such as the present are, therefore, simple, although the ultimate decision will frequently be extremely difficult. The judge must decide what is in the child's best interests. In making that decision, the welfare of the child is paramount, and the judge must look at the question from the assumed point of view of the patient (Re J). There is astrong
presumption in favour of a course of action which will prolong life, but that presumption is not irrebuttable (Re J). The term 'best interests' encompasses medical, emotional, and all other welfare issues (Re A). The court must conduct a balancing exercise in which all the relevant factors are weighed (Re J) and a helpful way of undertaking this exercise is to draw up a balance sheet (Re A)."
"Whilst its application requires sensitivity and care of the highest order, the law relating to applications to withdraw life sustaining treatment is now clear and well established. It can be summed up with economy by reference to two paragraphs from the speech of Baroness Hale in what is generally regarded as the leading case on the topic, notwithstanding that it related to an adult, against the backdrop of the Mental Capacity Act 2005. In Aintree University Hospital NHS Foundation Trust v James [2013] UKSC 67; [2014] AC 591 Baroness Hale said at paragraph 22:-
"Hence the focus is on whether it is in the patient's best interests to give the treatment rather than whether it is in his best interests to withhold or withdraw it. If the treatment is not in his best interests, the court will not be able to give its consent on his behalf and it will follow that it will be lawful to withhold or withdraw it. Indeed, it will follow that it will not be lawful to give it. It also follows that (provided of course they have acted reasonably and without negligence) the clinical team will not be in breach of any duty toward the patient if they withhold or withdraw it."
And from paragraph 39:-
"The most that can be said, therefore, is that in considering the best interests of this particular patient at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude towards the treatment is or would be likely to be; and they must consult others who are looking after him or are interested in his welfare, in particular for their view of what his attitude would be."
"As regards the application by the court of [the] best interests principle in the context of medical treatment to children who are not 'Gillick' competent, this is well settled. The following key principles can be drawn from the authorities, in particular Re J (A Minor)(Wardship: Medical Treatment) [1991] Fam 33, R (Burke) v The General Medical Council [2005] EWCA 1003, An NHS Trust v MB [2006] 2 FLR 319, Wyatt v Portsmouth NHS Trust [2006] 1 FLR 554, Re Ashya King [2014] 2 FLR 855, Kirklees Council v RE and others [2015] 1 FLR 1316 and Yates and Gard v Great OrmondStreet
Hospital for Children NHS Foundation Trust [2017] EWCA Civ 410:
i) The paramount consideration is the best interests of the child. The role of the court when exercising its jurisdiction is to take over the parents' duty to give or withhold consent in the best interests of the child. It is the role and duty of the court to do so and to exercise its own independent and objective judgment.
ii) The question for the court is whether, in the best interests of the child patient, a particular decision as to medical treatment should be taken. The term 'best interests' is used in its widest sense, to include every kind of consideration capable of bearing on the decision, this will include, but is not limited to, medical, emotional, sensory and instinctive considerations. The test is not a mathematical one, the court must do the best it can to balance all of the conflicting considerations in a particular case with a view to determining where the final balance lies…
iii) Each case is fact specific and will turn entirely on the facts of the particular case.
iv) In reaching its decision the court is not bound to follow the clinical assessment of the doctors but must form its own view as to the child's best interests.
v) Thestarting
point is to consider the matter from the assumed point of view of the patient. The court must ask itself what the patient's attitude to treatment is or would be likely to be. Within this context, the views of the child must be considered and be given appropriate weight in light of the child's age and understanding.
vi) There is astrong
presumption in favour of taking all
steps
to preserve life because the individual human instinct to survive is
strong
and must be presumed to be
strong
in the patient (see Airedale NHS Trust v Bland [1993] ACR 789 at 825). The presumption however is not irrebuttable. It may be outweighed if the pleasures and the quality of life are sufficiently small and the pain and suffering and other burdens are sufficiently great…
vii) The views and opinions of both the doctors and the parents must be considered. The views of the parents may have particular value in circumstances where they know well their own child. However, the court must also be mindful that the views of the parents may, understandably, be coloured by emotion or sentiment. There is no requirement for the court to evaluate the reasonableness of the parents' case before it embarks upon deciding what is in the child's best interests…
viii) The court must consider the nature of the medical treatment in question, what it involves and its prospects of success, including the likely outcome for the patient of that treatment.
ix) Regard must be paid to the rights of the child, in particular her right to life under Art 2 and her right to respect for private and family life under Art 8. Regard must also be paid to the parents' rights, in particular their right to respect for private and family life under Art 8. In this case, the right of Tafida and her parents to freedom of thought, conscience and religion under Art 9 of the ECHR is also engaged and must be considered.
x) There will be cases where it is not in the best interests of the child to subject him or her to treatment that will cause increased suffering and produce no commensurate benefit, giving the fullest possible weight to the child's and mankind's desire to survive"
Guy's
and
St
Thomas'
Children's NHS FT (2) Knight [2021] EWCA Civ 362 at [60]:
"The proposition that no physical harm can be caused to a person with no conscious awareness seems to me to be plainly wrong. As I observed during the hearing, the law clearly recognises that physical harm can be caused to an unconscious person. In the criminal law, for example, an unconscious person can suffer actual or grievous bodily harm and it would be no defence to a charge under the Offences against the Person Act 1861 that the victim was unconscious. The judge was in my view entirely justified in citing examples from the law of tort in which it has been recognised that physical harm can be caused to an insensate person. As Mr Mylonas observed, if the proposition advanced on behalf of the appellant was correct, there would be no limit on a doctor's ability to perform any surgery upon any insensate patient. For my part, I fully endorse the judge's reasoning for rejecting the appellant's proposition at paragraph 76 of his judgment."
Similarly, the court should take into account benefits of which A is unaware, such as the devoted care given to him by his parents in the PICU.
"Where, as in this case, the parents spend a great deal of time with their child, their views may have particular value because they know the patient and how he reacts so well; although the court needs to be mindful that the views of any parents may, very understandably, be coloured by their own emotion or sentiment. It is important tostress
that the reference is to the views and opinions of the parents. Their own wishes, however understandable in human terms, are wholly irrelevant to consideration of the objective best interests of the child save to the extent in any given case that they may illuminate the quality and value to the child of the child/parent relationship."
In fact, the European Court of Human Rights has indicated that regard should be had to parental wishes, not just their views about what is in their child's best interests. In Gard and Others v the United Kingdom - 39793/17 (Decision [2017] ECHR 605 (27 June 2017) the ECtHR identified the requirements that the
state
has to meet to satisfy its positive obligations under Art 2 of the European Convention on Human Rights in a case where life sustaining treatment is to be withdrawn:
"[80] In addressing the question of the administering or withdrawal of medical treatment … the Court has taken into account the following elements:
- the existence in domestic law and practice of a regulatory framework compatible with the requirements of Article 2;
- whether account had been taken of the applicant's previously expressed wishes and those of the persons close to him, as well as the opinions of other medical personnel;
- the possibility to approach the courts in the event of doubts as to the best decision to take in the patient's interests."
In any event the parents have Article 8 rights and their wishes have to be taken into account in that context. Nevertheless, parental views and wishes do not take precedence – A's best interests prevail. In Yates and Gard v Great Ormond
Street
Hospital for Children NHS Foundation Trust [2017] EWCA Civ 410, McFarlane LJ observed:
"As the authorities to which I have already made reference underline again and again, the sole principle is that the best interests of the child must prevail and that must apply even to cases where parents, for the best of motives, hold on to some alternative view."
stated
at [81]:
"The family's religion and culture are fundamental aspects of this child's background. The fact that she has been born into a devout religious family in which children are brought up to follow the tenets of their faith is plainly a highly relevant characteristic of hers. Under s.1(3)(d), the court is required to have regard to the fact that Alta is from a devout Hasidic family which has very clear beliefs and practices by which they lead their lives and that, if she had sufficient understanding, she too would very probably choose to follow the tenets of the family religion. I agree with Mr Simblet that this is a central part of her identity – of "who she is". It is unquestionably an important factor to be taken into consideration. But it does not carry pre-eminent weight. It must be balanced against all the other relevant factors."
Not all adherents to a particular religion share the same beliefs and it cannot be assumed that A would have developed the same or similar religious views as his parents. Nevertheless, I should take into account the parents' particular convictions and that A has been born into a family that hold to those convictions.
state
in their position
statement,
"From the perspective of A's parents and the faith and culture in which he was being raised, his greatest dignity will be found in continuing to live, even if that is with the assistance of very significant medical interventions, with his death occurring at a time of Allah's choosing, not that of a health professional or a court. It is contrary to A's innate human dignity to withdraw treatment from him."
"… mentioned in the Universal Declaration of Human Rights of 10 December 1948, the Preamble to whichstates
that "recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world", and Article 1 of which provides that "all human beings are born free and equal in dignity and rights"."
Hayden J set out many other international conventions and documents that refer to the "inherent dignity of all human beings" or similarly to the requirement to prevent the violation of "respect for human dignity". He then concluded at [63] and [64]:
"Though it is an ambitious objective to seek to draw from the above texts, drafted in differing jurisdictions and in a variety of contexts, unifying principles underpinning the concept of human dignity, there is astriking
thematic consistency. The following is a non-exhaustive summary of what emerges:
i. human dignity is predicated on a universal understanding that human beings possess a unique value which is intrinsic to the human condition;
ii. an individual has an inviolable right to be valued, respected and treated ethically, solely because he/she is a human being;
iii. human dignity should not be regarded merely as a facet of human rights but as the foundation for them. Logically, it both establishes and substantiates the construction of human rights;
iv. thus, the protection of human dignity and the rights that flow therefrom is to be regarded as an indispensable priority;
v. the inherent dignity of a human being imposes an obligation on theState
actively to protect the dignity of all human beings. This involves guaranteeing respect for human integrity, fundamental rights and freedoms. Axiomatically, this prescribes the avoidance of discrimination;
vi. compliance with these principles may result in legitimately diverging opinions as to how best to preserve or promote human dignity, but it does not alter the nature of it nor will it ever obviate the need for rigorous enquiry.
Thus, whilst there is and can be no defining characteristic of human dignity, it is clear that respect for personal autonomy is afforded pre-eminence. Each case will be both situational and person specific. In this respect there is astriking
resonance both with the framework of the Mental Capacity Act 2005 and the jurisprudence which underpins it. The forensic approach is 'subjective', in the sense that it requires all involved, family members, treating clinicians, the Courts to conduct an intense focus on the individual at the centre of the process. Frequently, it will involve drilling down into the person's life, considering what he or she may have said or written and a more general evaluation of the code and values by which they have lived their life."
The Guardian's Position
staff.
With deep sadness she agrees with the Trust's application. She told the court that she has sought to consider the case from A's point of view and that the balance of his interests lies in withdrawing ventilation. In relation to the question of whether A can feel pain, Ms Gaywood said that she considered that the evidence was that he did not feel pain but that a definitive position could not be taken.: "If he does not experience pain or pleasure my recommendation remains the same, balancing the benefits and burdens. If there is a possibility of him feeling pain, it would reinforce my recommendation."
The Court's Decision
stem
dead whereas within two days he was, for a while at least, breathing unassisted. In a different context Dame Elizabeth Butler-Sloss President said in Re U, Re B [2004] EWCA Civ 567, "The judge in care proceedings must never forget that today's medical certainty may be discarded by the next generation of experts or that scientific research may throw a light into corners that are at present dark". Similar caution should be exercised in the present case, in particular given the
striking
fact that A was declared to be brain
stem
dead three months ago and later
started
breathing. It was clear to me that Dr Brierley, Dr Z and Dr Y in particular accepted that predictions about A needed to be made with humility. However, even allowing for proper caution, I find that it is virtually certain that A will make no form of recovery from his extensive brain damage that would allow him to become aware of his surroundings or to experience pleasure. Furthermore, he will always require ventilation in an intensive care unit.
"I have given careful consideration to the submission of the Trust and the Children's Guardian that the possibility that Tafida feels pain cannot be completely excluded and that, accordingly, Tafida will be increasingly burdened by pain consequent upon the other physical disabilities she will develop in the future, as she would be were she to develop a greater level of awareness, can likewise not be excluded as a possibility. However, some caution must be exercised in respect of this submission. Thestandard
of proof applicable in these proceedings is the balance of probabilities. Whilst it is tempting to say simply that the possibility that Tafida feels pain cannot be entirely ruled out and therefore the court must proceed on the basis that it is better to err on the side of caution, this does not maintain fidelity to the applicable
standard
of proof. Such fidelity is important in every case, but all the more so when the outcome being considered is so grave."
Guy's
and
St
Thomas'
v Knight [2021] EWHC 25, I applied that approach in relation to a finding that Pippa had no conscious awareness because it was important to draw a distinction between a minimally conscious
state
and a
state
of no awareness at all. In the later judgment of Hayden J in Newcastle Upon Tyne Hospitals NHS Foundation Trust v H [2022] EWFC 14, the court was faced with opinion evidence that it was unlikely, but not impossible, that H experienced discomfort, pain or pleasure at some level. Hayden J held,
"I do not consider that civil test has application in this situation. I would go further, I consider it would be quite wrong, when balancing the difficult and sensitive issues raised here, not to take account of the fact that treatment might be causing H pain. In this case, as I have set out above, the situation is further complicated by the fact that Dr Lumsden agrees that it is likely that H periodically experiences some kind of "primitive pain" reaction and discomfort. Dr Lumsdenstates
that this is not to be equated with the pain that a sentient adult might experience. The civil
standard
of proof test i.e., the balance of probabilities, certainly requires to be applied in particular, and prescribed circumstances. In this context, however, i.e., in an investigative, non-adversarial, sui generis process, such a constricted approach lacks the necessary nuance. It is medically impossible to exclude the possibility of pain in H's case. There is no test, there can be, in the case of a young child, no formal assessment. The conclusions reached are based on observations alone to establish a negative i.e., what is thought not to be there. It is trite to say that this is a delicate and sensitive process. The Court's finding should reflect nothing more and nothing less than that reality when it is evaluating those factors that illuminate H's best interests. Where the doctors cannot exclude the possibility of pain, neither should the Judge."
"If a legal rule requires a fact to be proved (a "fact in issue"), a judge or jury must decide whether or not it happened. There is no room for a finding that it might have happened. The law operates a binary system in which the only values are 0 and 1. The fact either happened or it did not."
Hence, if I were to find that A probably does not feel pain then the possibility that he does feel pain is excluded when the best interests assessment is made. The second approach is to avoid a binary determination and to carry forward both the probability that A does not feel pain and the possibility that he does feel pain into the best interests assessment.
stark
as Mr Davy suggests. The binary approach articulated by Lord Hoffmann applies if a fact has to be proved. In Re A (A child) [2016] EWCA Civ 759, the first ground of appeal was that, "the judge was plainly wrong to make a finding of fact that A was in pain and/or felt pain." The Court of Appeal reviewed the evidence on which the judge had had to decide that issue and noted at [49],
"The judge, having seen and heard the evidence had to resolve this difficult issue and in doing so had to choose between what was (given the level of expertise and experience of the experts before her) undoubtedly a 'reasonable range of professional opinion'.
The Court of Appeal held at [50],
"… it cannot be said that the judge was plainly wrong in preferring the interpretation of Drs Manna andThomas
that the physical signs which they had observed, and which are the commonplace signs associated with pain and/or discomfort, are evidence of precisely that."
Hence, the Court of Appeal approved the making of a finding of fact, which must have been made on the balance of probabilities, as to whether the individual concerned could feel pain. In that case there was disputed expert evidence as to whether pain was experienced. It would have been impermissible for the court to have made a finding that expert A was correct, and then to proceed to a best interests assessment on the basis that the expert B might have been right. A determination was necessary and the decision is a binary one. However, in the present case the situation is different.
stimuli
and his EEG is unresponsive to
stimuli,
but it cannot be excluded and need not be excluded for a meaningful determination of best interests to be made.
state
or was wholly unaware. That was a decision to be made on the balance of probabilities in the light of all the evidence. Once the finding had been made on the balance of probabilities, the alternative finding no longer fell to be considered as part of the best interests assessment. The situation appears to me to be quite different in the present case where a best interests assessment can be done on the basis that A has no conscious awareness of pain (on the balance of probabilities) but may have a vestigial reflex response to pain. Those two conclusions are not mutually exclusive. In this case, as in Newcastle v H, the court is able to make findings that allow for possibilities and uncertainties and to take those into account in an assessment of best interests.
stark
choice in this case. There are only two possible outcomes. The first is that ventilation is continued. A would remain in the PICU. His life expectancy would be uncertain but limited. He would be subjected to the same or similar interventions as at present. He would be at risk of suffering infection or barotrauma. The alternative is to withdraw ventilation. The parties have agreed a care plan in the event of a decision by this court that continued ventilation is not in A's best interests. It involves a plan for ceilings of care and then extubation. On extubation it is likely that A would survive for a short time only. The care plan would allow him to be made as comfortable as possible and to be with his family when he died.
steps
should be taken to preserve life.
strong
religious convictions and that A is a member of a family in which those convictions play such an important role but I cannot be bound by them, any more than I can be bound by the different religious convictions or secular beliefs of any other parent or party in other cases. I have to make a decision applying the legal principles set out above by which I am bound, not by adhering to the principles of a particular religion.
strong
but some realism is also required. Given the devastating nature of A's brain injuries there can be no realistic hope of an improvement or a medical breakthrough in the next few weeks or months that will change for the better the balance of benefits and burdens that now characterise A's life.
strong
views of those caring for A at the Evelina as to his best interests.
stimuli, he has EEGs which are the equivalent of a flat-lining heart monitor, and MRI scans which show a devastating loss of brain tissue. Sufficient time has now passed since his admission to the Evelina to conclude with confidence that he has no hope of any form of recovery and will never leave intensive care. Continued treatment is to that extent futile. Continued ventilation and intensive care would allow A to remain alive for longer than were they to cease but, whilst there is a presumption that life should be preserved, that presumption is rebutted in this case where A will only to continue to suffer more burdens that benefits from living.