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You are here: BAILII >> Databases >> England and Wales High Court (Family Division) Decisions >> Great Ormond Street Hospital for Children v Braqi & Ors [2024] EWHC 2910 (Fam) (15 November 2024) URL: https://www.bailii.org/ew/cases/EWHC/Fam/2024/2910.html Cite as: [2024] EWHC 2910 (Fam) |
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FAMILY DIVISION
Strand, London, WC2A 2LL |
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B e f o r e :
____________________
GREAT ORMOND STREET HOSPITAL FOR CHILDREN | ||
NHS FOUNDATION TRUST | Applicant | |
and | ||
Neriman Braqi (1) | ||
Ayden Braqi (2) | ||
(by his CAFCASS Guardian) | Respondents |
____________________
Cleo Perry KC and Frankie Shama (instructed by Dawson Cornwell LLP) 1st respondent
Malcolm Chisholm (instructed by CAFCASS) 2nd respondent
Hearing dates: 23-25 & 28 October 2024 and (in respect of Ceilings of Care only) 13th November 2024
____________________
Crown Copyright ©
Mrs Justice Morgan:
The limited movement observed when he was tested for SMARD1 in November 2023 he has lost. He cannot turn or move his head but he is able to fix and follow with his eyes – though his ability to fix and follow across the full arc is also now diminished since the muscles of his eyes are weakened. The evidence of the medical witnesses as to his condition and prognosis is considered later in this judgment.
Preliminary Application
a) he repeatedly emphasised the need to look at the whole picture and reinforced that the data alone did not suffice. As he put it 'Summary data shows you one thing but you need to be at the bedside to understand what is happening'. Illustrating this point further, he explained that in his own analysis looking for life threatening desaturations ... he had taken drops to 80% - from other clinicians I heard lower figures used), they could be found on the data but what was vital to know is how staff are responding and what they are having to do. Are they giving an O2 boost; Are they having to suction? Are they having to move to bagging? This clinical picture is all within the context, he reminded the court, of a child on a ventilator in intensive care where specialist bedside response to oxygen desaturation is near immediate. A data reading showing a fall in O2 or the duration of a fall is not in itself key to the understanding of what is happening. In evidence it emerged that in addition to carrying out the data analysis he had on occasion had clinical responsibility for Ayden as part of the consultant rota.
b) Having done an analysis of 9 weeks of data, he explained when asked the process he had undertaken to do that analysis. His response to whether there would be value in analysing the T3 data for the whole period of 11 months admission additionally to the 9 weeks was that it 'wouldn't tell me anything I didn't already know' and that again the best evidence of Ayden's situation including desaturations is what is clinically observed by those who are looking after him. He had not, when on rota with clinical responsibility for Ayden ever known a shift without desaturation reported.
i) Dr ZK, a consultant in paediatric intensive care and lead consultant for Ayden;
ii) Dr ZQ, a consultant Respiratory Paediatrician;
iii) Dr ZO, a consultant Paediatric Neurologist;
iv) Professor ZL, professor of Paediatric Intensive Care;
v) Ms ZN, Physiotherapist;
vi) Ms ZP, Senior Nurse on the PICU where Ayden is treated;
I had also expert and clinical evidence from those who were not required to give oral evidence
i) Dr ZR, consultant in paediatric palliative medicine;
ii) Dr ZS consultant respiratory paediatrician (who had been the lead respiratory consultant for Ayden but by reason of her prolonged absence abroad was known to be unavailable in this part of the year and Dr ZQ gave evidence in her stead)
iii) Dr ZT Consultant in paediatric palliative medicine and chronic pain medicine.
I had in addition the second opinion evidence which had been sought from those at another hospital, of Ayden's Mother's preference, namely from Dr ZU, consultant in paediatric neurology, Dr ZV consultant in Paediatric Intensive Care and from Dr ZW, Consultant in paediatric respiratory medicine. There was also consultation of and the e mail view provided from Dr ZY, a paediatric pulmonologist in the United States of America who had been contacted by GOSH and similarly in short form a view from Dr ZZ who is the director of an emergency department division of Neonatal and Paediatric Critical Care and semi intensive care at a hospital in Italy and who had been contacted by Ayden's family.
The Medical and Clinical Evidence.
The Evidence of Ayden's Mother
The Legal Framework
"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."
"The court may grant a declaration declaring that treatment in accordance with the recommendation of the child's doctors can take place, on the grounds that it is in the child's best interests (see Re B (A Minor) (Wardship: Medical Treatment) (1982) 3 FLR 117). The jurisdiction of the court to make such an order arises where a child lacks the capacity to make the decision for him or herself, in the context of a disagreement between those with parental responsibility for the child and those treating the child (An NHS Trust v MB [2006] EWHC 507 (Fam)). The court has no power to require doctors to carry out a medical procedure against their own professional judgment." That aspect is something which resonates with the situation in this case where Ms Braqi's strong wish that a tracheostomy should be performed cannot survive the unanimous medical view as to whether that procedure is viable.
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 starting 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.
iii) 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. Within this context the wise words of Hedley J in Portsmouth NHS Trust v Wyatt and Wyatt, Southampton NHS Trust Intervening [2005] 1 FLR 21 should be recalled:
"This case evokes some of the fundamental principles that undergird our humanity. They are not to be found in Acts of Parliament or decisions of the courts but in the deep recesses of the common psyche of humanity whether they be attributed to humanity being created in the image of God or whether it be simply a self-defining ethic of a generally acknowledged humanism."
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) There is a strong 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. 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.
vi) Within this context, 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.
vii) 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.
viii) Each case is fact specific and will turn entirely on the facts of the particular case.
ix) 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. In this context, in An NHS Trust v MB Holman J, in a passage endorsed by the Court of Appeal in Re A (A Child) [2016] EWCA 759, said as follows:
"The views and opinions of both the doctors and the parents must be carefully considered. 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 to stress 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." "The views of the child must be considered and be given appropriate weight in light of the child's age and understanding."
"In North London Clinical Commissioning Group v GU (supra), I observed the following: ... ... ... ...
i. Firstly, 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 the State 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."
Religious and Cultural Issues
Professional Guidance
"We emphasise two important points so as to avoid confusion:
This document sets out circumstances under which withholding or withdrawing life- sustaining treatment might be ethically permissible—NOT circumstances under which such treatment must certainly be withheld or withdrawn.
The document describes situations in which individual children should be spared inappropriate invasive procedures— NOT types of children to whom appropriate procedures should be denied."
There are three sets of circumstances in which the RCPCH advises that treatment limitation can be considered "because it is no longer in the child's best interests to continue, because treatments cannot provide overall benefit".
I:- When life is limited in quantity If treatment is unable or unlikely to prolong life significantly it may not be in the child's best interests to provide it.
These comprise:
Brain stem death, as determined by agreed professional criteria appropriately applied
Imminent death, where physiological deterioration is occurring irrespective of treatment
Inevitable death, where death is not immediately imminent but will follow and where prolongation of life by LST confers no overall benefit
II:- When life is limited in quality This includes situations where treatment may be able to prolong life significantly but will not alleviate the burdens associated with illness or treatment itself. These comprise:
Burdens of treatments, where the treatments themselves produce sufficient pain and suffering so as to outweigh any potential or actual benefits
Burdens of the child's underlying condition. Here the severity and impact of the child's underlying condition is in itself sufficient to produce such pain and distress as to overcome any potential or actual benefits in sustaining life
Lack of ability to benefit; the severity of the child's condition is such that it is difficult or impossible for them to derive benefit from continued life.
III:- Informed competent refusal of treatment.
Adults, who have the capacity to make their own decisions, have the right to refuse LST and to have that refusal respected. So an older child with extensive experience of illness may repeatedly and competently consent to the withdrawal or withholding of LST. In these circumstances and where the child is supported by his or her parents and by the clinical team there is no ethical obligation to provide LST
Arrangments to Visit Ayden
Analysis and Conclusions
Benefits
Burdens
Declarations
Postscript:
Ayden 's mechanical ventilation was withdrawn on the morning of 14th November. He died shortly afterwards in the Rainbow Room, away from the PICU, and with his family around him.