“Continued intensive care carries significant burdens including seizures, frequent suctioning due to the inability to breathe or swallow, necessary medical interventions such as blood tests which appear to be causing pain, distress and therefore suffering.[Child Q] is unable to move position if he becomes uncomfortable, sadly his life is limited to his intensive care cot.”
“I cannot think of any missed investigations and, more importantly, any that could lead to changes in management or improved prognosis.”
“1. His brain is profoundly affected. He makes no spontaneous movements. He does not open his eyes. He may be able to hear as his heart rate alters if the intensive care room becomes noisy. Otherwise he shows no evidence of awareness of his surroundings. Initially he made dystonic movements and his EEG was severely abnormal but did not demonstrate seizures. Over the past 2 months this has deteriorated and he now has intractable seizures that are not controlled, despite 3 different anticonvulsants at maximum doses. He grimaces during clinic seizures which can occur every few minutes. Further therapeutic options are limited as he cannot absorb enteral drugs. The appearance of his brain on MRI scan has also deteriorated and while it initially simply appeared immature now it looks very abnormal with abnormal white matter and loss of brain volume. This is indicative of a degenerative disorder. 2. He is ventilator dependent. He makes no respiratory effort. His lungs are also abnormal – he has a bell shaped chest, with abnormal lung parenchyma and intermittently requires significant support. He cannot cough or swallow his secretions and requires frequent suction. 3. He cannot swallow his own secretions or absorb milk when given via a nasogastric tube. He is dependent on parenteral nutrition as his gut does not work, likely due to poor/absent gut motility reflecting an issue with smooth muscle function. 4. He cannot pass urine without a catheter – likely due to smooth muscle function. 5. He has arthrogryposis, with contractures involving all 4 limbs, overlapping fingers and bilateral talipes. This is felt to be on the basis of fetal akinesia (lack of movements before birth). 6. His pituitary gland does not work; therefore, he requires replacement cortisone and thyroxine. Additionally, he has diabetes insipidus as his posterior pituitary gland cannot regulate his fluid balance. He requires hourly monitoring of fluid balance, frequent blood tests and DDAVP subcutaneously regularly to prevent him becoming dehydrated. 7. Although no diagnosis has yet been reached all treatable or reversible conditions have been ruled out. It was the view of the group of professionals that even if full intensive care were to be continued, he would likely survive for months at best.”
“Medical interventions are simply sustaining the life of Baby [Q] from which he cannot be said to be deriving any benefit beyond an existence and exposure to suffering. The CEAG therefore consider the withdrawal of life sustaining therapy from Baby [Q] to be in his wider best interests and an ethically acceptable decision.”
“We believe that if God wants to take [Child Q’s] life, God will take it, without me interfering.”
“56 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 In re B (A Minor) (Wardship: Medical Treatment)[1981] 1 WLR 1421 ). 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 (A Child Represented by CAFCASS as Guardian Ad Litem)[2006] EWHC 507 (Fam) ;[2006] 2 FLR 319 ). The court has no power to require doctors to carry out a medical procedure against their own professional judgment. 57. As I have observed in previous cases, the legal framework that the court must apply in cases concerning the provision of medical treatment to children who are not “Gillick” competent is well settled. The following key principles can be drawn from the authorities, in particular In re J (A Minor) (Wardship: Medical Treatment)[1991] Fam 33 , R (Burke) v General Medical Council (Official Solicitor intervening)[2005] EWCA 1003 ;[2006] QB 273 , An NHS Trust v MB, Portsmouth Hospitals NHS Trust v Wyatt[2005] EWCA Civ 1181 ;[2005] 1 WLR 3995 , Kirklees Council v RE[2014] EWHC 3182 (Fam) ;[2015] 1 FLR 1316 and In re Gard (A Child) (Child on Life Support: Withdrawal of Treatment)[2017] EWCA Civ 410 ;[2018] 4 WLR 5 : 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 (Southampton NHS Trust intervening)[2004] EWHC 2247 (Fam) ;[2005] 1 FLR 21 at [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 should 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 In re A (A Child)[2016] EWCA Civ 759 ; [2016] Med LR 427 at [34] , 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.” x. The views of the child must be considered and be given appropriate weight in light of the child's age and understanding.” 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 (Southampton NHS Trust intervening)[2004] EWHC 2247 (Fam) ;[2005] 1 FLR 21 at [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 should 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 In re A (A Child)[2016] EWCA Civ 759 ; [2016] Med LR 427 at [34] , 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.” x. The views of the child must be considered and be given appropriate weight in light of the child's age and understanding.”
“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.”
“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 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.”
“Article 2… imposes a positive obligation to give life-sustaining treatment in circumstances where, according to responsible medical opinion, such treatment is in the best interests of the patient but does not impose an absolute obligation to treat if such treatment would be futile.”
“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”
“When considering the child’s assumed point of view, it is difficult if not impossible to attribute any views, including religious beliefs, to a very young child who has never had, nor will have, any cognitive understanding.”
“The applicant recognises that there is a strong presumption in favour of the preservation of life. Baby Q’s life has value and dignity. He is loved by his family who visit him every day. He cannot see but may be able to hear. It is entirely understandable that his parents, who have expressed strong religious faith and who have described personal experience of surviving serious complications in a neonatal intensive care unit, are hoping for a miracle. Tragically, it is submitted that these factors are outweighed by the burdens of continued treatment: in particular, by the frequent epileptic seizures which appear to be painful and distressing for Baby Q and the burdens of intensive care treatment, in conjunction with the very poor prognosis. Adopting the words of MacDonald J at first instance in Fixsler, this is a case “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.”