"i) An inability to maintain an open airway and adequate ventilation to sustain life for any significant period of time without support. ii) An inability to protect her airway. iii) An inability to maintain core body temperature. iv) An inability to blink and protect the corneal surface of the eyes, optic atrophy, an inability to perceive light and darkness and repeated ulceration of the corneas. v) An inability to perceive sound due to injury to the auditory cortex. vi) Sustained severe spasticity (stiffness from constant contraction of muscles) of the whole body which will increasingly lead to more permanent joint contractures (joints stuck in same position as they are always stiffly held that way by the damaged brain) and scoliosis (a bent spine). vii) Spinal clonus (contracting jerks of the body triggered by the spine that is not modulated by a brain). viii) Severe spasticity (requiring medication, positioning for comfort and prevention of contractures, which have already developed in some of the joints of her hands). ix) An inability to swallow. x) Seizures. xi) Global development delay."
"As the authorities to which I have already made reference underline time 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."
"The choice is that of the patient, if of full age and capacity; the choice is that of the parents or court if, by reason of his age, the child cannot make the choice and it is a choice which must be made solely on behalf of the child and in what the court or parents conscientiously believe to be his best interests."
"there is a balancing exercise to be performed in assessing the course to be adopted in the best interests of the child …. This brings me face to face with the problem of formulating the critical equation. In truth it cannot be done with mathematical or any precision. There is without doubt a very strong presumption in favour of a course of action which will prolong life, but … it is not irrebuttable ….[A]ccount has to be taken of the pain and suffering and quality of life which the child will experience if life is prolonged. Account has also to be taken of the pain and suffering involved in the proposed treatment itself."
"We know that the instinct and desire for survival is very strong. We all believe in and assert the sanctity of human life. As explained, this formulation takes account of this and also underlines the need to avoid looking at the problem from the point of view of the decider, but instead requires him to look at it from the assumed point of view of the patient . This gives effect, as it should, to the fact that even very severely handicapped people find a quality of life rewarding which to the unhandicapped may seem manifestly intolerable. People have an amazing adaptability. But in the end there will be cases in which the answer must be that it is not in the interests of the child to subject it to treatment which will cause increased suffering and produce no commensurate benefit, giving the fullest possible weight to the child's, and mankind's, desire to survive [emphasis added]."
"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 a strong 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 ) ….[emphasis added]"
"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 to the treatment is or would be likely to be; and they must consult others who are looking after him or interested in his welfare, in particular for their view of what his attitude would be."
"In so far as Sir Alan Ward and Arden LJ [ in the Court of Appeal] were suggesting that the test of the patient's wishes and feelings was an objective one, what the reasonable patient would think, again I respectfully disagree. The purpose of the best interests test is to consider matters from the patient's point of view. That is not to say that his wishes must prevail, any more than those of a fully capable patient must prevail. We cannot always have what we want. Nor will it always be possible to ascertain what an incapable patient's wishes are. Even if it is possible to determine what his views were in the past, they might well have changed in the light of the stresses and strains of his current predicament. In this case, the highest it could be put was, as counsel had agreed, that "
"This approach follows very closely the recommendations of the Law Commission in their Report on Mental Incapacity (1995, Law Com No 231) on which the 2005 Act is based. It had been suggested in Re F ( Mental Patient: Sterilisation)[1990] 2 AC 1 that it might be enough if the doctor had acted in accordance with an accepted body of medical opinion (the Bolam test for medical negligence). However, as the Court of Appeal later recognised in Re S (Adult Patient: Sterilisation)[2001] Fam 15 , there can only logically be one best option. The advantage of a best interests test was that it focused upon the patient as an individual, rather than the conduct of the doctor, and took all the circumstances, both medical and non-medical, into account (paras 3.26, 3.27). But the best interests test should also contain "a strong element of 'substituted judgment'" (para 3.25), taking into account both the past and present wishes and feelings of patient as an individual, and also the factors which he would consider if able to do so (para 3.28). This might include "altruistic sentiments and concern for others" (para 3.31). The Act has helpfully added a reference to the beliefs and values which would be likely to influence his decision if he had capacity. Both provide for consultation with carers and others interested in the patient's welfare as to what would be in his best interests and in particular what his own views would have been. This is, as the Explanatory Notes to the Bill made clear, still a "best interests" rather than a "substituted judgment" test, but one which accepts that the preferences of the person concerned are an important component in deciding where his best interests lie. To take a simple example, it cannot be in the best interests to give the patient food which he does not like when other equally nutritious food is available."
"I can find no basis for distinguishing between the two concepts. On the contrary, the case law demonstrates that the terms are normally used interchangeably."
"(a) the ascertainable wishes and feelings of the child concerned (considered in the light of his age and understanding); (b) his physical, emotional and educational needs; (c) the likely effect on him of any change in his circumstances; (d) his age, sex, background and any characteristics of his which the court considers relevant; (e) any harm which he has suffered or is at risk of suffering; (f) how capable each of his parents, and any other person in relation to whom the court considers the question to be relevant, is of meeting his needs; (g) the range of powers available to the court under this Act in the proceedings in question."
"122. It is clear that the starting point of the court's analysis is to consider the matter from the assumed point of view of the child. The court must ask itself what the child's attitude to treatment is or would be likely to be. Within this context, in accordance withs.1(3)(a) of the Children Act 1989 , the ascertainable wishes and feelings of the child on this question, which will include his or her values and beliefs, must be considered and be given appropriate weight in light of the child's age and understanding. But that is a very different to the proposition that the child's values and beliefs must start with elevated importance or some pre-assigned weight in the balance. Whilst I accept that paragraphs [22] and [39] of judgment of Baroness Hale in Aintree are often cited in cases concerning children as conveniently encapsulating the overall approach to best interests in medical cases (and were used in this way by Hayden J in Manchester CC v M[2019] EWHC 468 (Fam) ), I do not read those passages as requiring the court to give preferential weight to the values and beliefs of the child in the balancing exercise …. [T]he position unders 1(3)(a) of the Children Act 1989 is clear. The wishes and feelings of the child do not carry any presumption of precedence over any of other the other factors in the welfare checklist. The child's wishes and feelings are only one factor in the case and the court is not bound to follow it. Having regard to the words of section 1(3)(a), what governs the weight to be attached to any ascertainable values or beliefs of the child in each case is the principle of the evolving capacity of the child, expressed as a function their age and understanding. The weight to be attached to the child's wishes and feelings will depend on the particular circumstances of each case and the final decision is that of the court and not of the child (see Re P (Minors)(Wardship: Care and Control) [1992] 2 FCR 681). At all times, the child's best interests are the court's paramount consideration and this demands that other factors, including the wishes and feelings of the child, may, in a given case, outweigh the ascertained beliefs and values of the child. Thus, whilst in an individual case, the child's values and beliefs may attract the most weight, in all cases they start with an equal value to that of all other relevant factors. 123. …[I]n cases under theChildren Act 1989 , and in particular those cases concerning the medical treatment of younger children and infants, it is not helpful to seek to import, wholesale, principles from theMental Capacity Act 2005 . To take Mr Sachdeva's submission regarding values and beliefs as an example, beyond the obvious fact that children below the age of 16 are outwith the jurisdiction of the 2005 Act, that Act deals with a fundamentally different constituency of people to that of theChildren Act 1989 . Within this context, the emphasis placed on beliefs and values by s 4(6) … is consistent with the fact that those with whom theMental Capacity Act 2005 is concerned, namely adults and children over the age of 16, are more likely to have developed sophisticated religious, moral or philosophical beliefs and values before losing capacity and to have discussed them with others than are the young children or infants that theChildren Act 1989 is often concerned with. Given the fact of evolving capacity, the sophistication of the values and beliefs of those children vary widely in accordance with their age and understanding, the concepts of thought, conscience and religion implying a developing capacity to understand, appreciate and engage rationally with competing ideas and beliefs and, ultimately, the fully formed capacity to exercise choice in respect of those ideas and beliefs. These matters explain the wider wording ofs 1(3)(a) of the Children Act 1989 and why it is well suited to evaluating the proper weight to be attached to the widely differing sophistication of children's values and beliefs (see Re P (Section 91(14) Guidelines)(Residence and Religious Heritage)[1999] 2 FLR 573 ) and highlight the undesirability of placing a gloss on s 1(3)(a) by usings 4(6) of the 2005 Act . 124. To use ss 4(6) and 4(7) of theMental Capacity Act 2005 to add a gloss tos 1(3)(a) of the 1989 Act risks imputing to a young child matters beyond their comprehension and failing to take account of [the] principle of evolving capacity (which is nowhere mentioned ins 4(6) of the 2005 Act ), contrary to the express requirement bys 1(3)(a) of the 1989 Act . This is a particular risk where one is dealing with the complex area of religious belief, where the child's age and understanding is key to determining the weight to be attached to any such belief. Within this context, I again note the terms of Art 6(2) of Council of Europe's Convention on Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine, which stipulates that 'The opinion of the minor shall be taken into consideration as an increasingly determining factor in proportion to his or her age and degree of maturity.'"
"166. Taking as a starting point the assumed view of Tafida, there are obvious difficulties in a judge seeking to place him or herself in the shoes of a four year old child. However, the court must do the best it can on the evidence available. In this case, the parents and the maternal aunt in particular urge upon the court evidence of Tafida's understanding of the religious tradition in which she was being raised as the basis for establishing Tafida's assumed view on the question of whether or not treatment should continue. Within this context, I accept the submission of Ms Gollop and Mr Gration that caution is needed when seeking to establish an assumed point of view for Tafida as a basis for taking account of her wishes and feelings. In relation to matters of thought, conscience and religion, children will move along a continuum from relying on the direction and guidance provided by their parents to ultimately having their own ideas and making their own choices about matters of religion and conscience. In the formative stages, their understanding will not be sophisticated. On the evidence available to the court, I am satisfied that that is the position in this case. It is plain on that evidence that Tafida had a growing understanding of the practices of Islam, had developed a concept of the importance of life and an accepting and non-judgmental approach to those with disability. However, and as fairly conceded by the mother, given Tafida's age and understanding, I am also satisfied that she would have had in February 2019 no concept or contemplation of her current situation, or of the complex and grave legal, moral and ethical issues it raises. 167. Within this context, in seeking an assumed point of view for Tafida as a starting point, it is important that the subject matter of that assumed view is properly formulated by reference to the issue before the court. In the context of this case, that subject matter is framed by the Trust as a bare situation of continued life likely, but not certainly, pain free but in a situation of minimal or no awareness, with no hope of recovery and the certain prospect of developing further debilitating conditions, which with any improvement in awareness will further burden Tafida. On the evidence, this is an accurate but as I will come to, incomplete formulation. Within this context, a formative appreciation that life is precious, a wish to follow a parent's religious practice and a non-judgmental attitude to disability is very different to the far more complex concept of living a life of minimal awareness with no prospect of substantive recovery. In such circumstances, and notwithstanding her developing conception of the value of life and of the religion in which she was being raised, I accept that it would be unsafe to infer from the available evidence an acceptance by Tafida of, or wish to live, such an existence per se. 168. However, in this case I am satisfied that the subject matter of Tafida's assumed view must be framed somewhat more widely than the formulation contended for by the Trust having regard to the medical consensus between the doctors in this jurisdiction and in Italy of what can ultimately be achieved for Tafida, namely care by her family at home on ventilation in the same manner as children in a similar position to Tafida elsewhere in this jurisdiction. Further, I must also bear in mind that a person may wish to continue to receive treatment notwithstanding the presence of profound disability and that a child's attitude is often influenced by the views, beliefs and guidance of his or her parents. Within this context, whilst for the reasons I have set out above I am cautious about imputing to Tafida any sophisticated views generally given her age the levels of religious, I am satisfied that if Tafida was asked she would not reject out of hand a situation in which she continued to live, albeit in a moribund and at best minimally conscious state, without pain and in the loving care of her dedicated family, consistent with her formative appreciation that life is precious, a wish to follow a parent's religious practice and a non-judgmental attitude to disability."
"The court must face head on the question of whether it can be said that the continuation of life sustaining treatment is in Tafida's best interests. 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. In this context, I do not discount the grave matters prayed in aid by the Trust. However, the law that I must apply is clear and requires that the best interests decision be arrived at by a careful and balanced evaluation of all of the factors that I have discussed in the foregoing paragraphs. Having undertaken that balance, in circumstances where, whilst minimally aware, moribund and totally reliant on others, Tafida is not in pain and medically stable; where the burden of the treatment required to keep her in a minimally conscious state is low; where there is a responsible body of medical opinion that considers that she can and should be maintained on life support with a view to placing her in a position where she can be cared for at home on ventilation by a loving and dedicated family in the same manner in which a number of children in a similar situation to Tafida are treated in this jurisdiction; where there is a fully detailed and funded care plan to this end; where Tafida can be safely transported to Italy with little or no impact on her welfare; where in this context the continuation of life-sustaining treatment is consistent with the religious and cultural tenets by which Tafida was being raised; where, in the foregoing context, transfer for treatment to Italy is the choice of her parents in the exercise of their parental responsibility and having regard to the sanctity of Tafida's life being of the highest importance, I am satisfied, on a fine balance, that it is in Tafida's best interests for life sustaining treatment to continue…."
"71. In these circumstances, I have no hesitation in accepting the submission that an assessment of the various dimensions of Alta's best interests must take into account the particular religious, cultural and ethical context of this case provided by the fact that Alta is an Israeli citizen, the fact that the family intended to emigrate with Alta to Israel and the family's Orthodox Jewish beliefs and that the assessment of her best interests must be informed by consideration of the religious and cultural values of the family, and by recognition that religious and ethical frameworks governing these subjective factors differ…. 72. However, within the well-established legal framework summarised above, such matters remain at all times simply factors to be placed into the overall best interests evaluation, which factors may or may not drive the outcome of that evaluation depending on the nature and strength of all of the other factors, both medical and non-medical, that fall properly to be placed in the best interest analysis on the particular facts of the case. Within this context, I reject the submission of Ms Butler-Cole and Dr George that "the best interests decision-making process can and must be framed within the Jewish belief system in this case."
"First, it is not disputed by the parents or Rabbi Goldberg that Alta does sometimes exhibit spasms when handled and when subjected to treatment. Second, ... the parents have had little contact with Alta in hospital. This must necessarily reduce significantly the weight the court can attach to the parents' assertions regarding the nature and pattern of Alta's response to handling, care and treatment. Whilst Rabbi Goldberg visits more often, his interaction with Alta is less comprehensive than that of the treating clinicians and nursing staff. Third, the parents are, inevitably, in these very difficult circumstances subject to the flattering voice of hope…. Fourth, neither the parents nor Rabbi Goldberg are medically qualified and necessarily observe Alta's responses from a lay perspective rather than a medical one."
"I accept the evidence of Dr Hart and Dr A that the anatomical pathways that mediate the reflexive response pain are, to a greater or lesser extent, intact in Alta. Dr A's detailed evidence in this regard demonstrates to my satisfaction that although both Alta's brain stem and her thalami are damaged they are still partially functional and that therefore critical structures for perception of pain remain present and therefore she can still perceive pain."
"I am further satisfied that the evidence before the court demonstrates on the balance of probabilities that Alta remains able generate a reflex to pain, albeit that she lacks the cerebral structures to derive meaning from this or any understanding of the pain."
"On the evidence before the court, I am further satisfied that over the remainder of her short life it is more probable than not that Alta's condition will significantly deteriorate …. I accept the expert evidence of Dr Hart that Alta's symptoms are going to worsen, and she will accumulate further comorbidities that will increase the burden of pain that I am satisfied that she is bearing, including worsening dystonia and spasticity with associated pain, hip dislocation and pain, scoliosis, which may be painful, pressure sores, corneal abrasions and ulcers, and urinary tract infections"
"95. The starting point in the analysis of Alta's best interests is to consider the matter from the assumed point of view of Alta. As I have noted elsewhere, there are inherent and obvious difficulties in a judge seeking to place him or herself in the shoes of a two year old child. In undertaking this difficult exercise I am not able, in circumstances where Alta suffered a brain injury that left her with no ability to learn about the world around her before she was able to understand anything of religion and culture into which she was born, to accept the submission that the assessment of Alta's perspective on this matter should start by assuming, without more, that Alta would share the values of her parents, of her brother, and of her wider family and community. I accept that a child's attitude may be, and indeed often is influenced by the views, beliefs and guidance of his or her parents. But the child remains an individual in his or her own right. In some cases, of which Raqeeb was an example, there may be evidence that will allow the court to make an informed judgment as to the extent to which a child shares in their parents' values and the values of their community and factor that into the overall evaluation of best interests. That is not the case here. Alta is not of an age, nor in a condition to have knowledge of and to adopt her parents' values, from which she could extrapolate a position on the complex issues that arise in this case. 96. In these circumstances, and absent any evidence to assist the court in determining the extent to which Alta would adopt wholesale the views of her parents, I am satisfied that the furthest the court can safely go in seeking to place itself in Alta's shoes is to acknowledge that a child's attitude may be, and often is influenced by the views, beliefs and guidance of his or her parents. Within this context, I have held in mind at all times the strict religious credo that the parents adopt and the tenets of that credo as they relate to the withdrawal of life sustaining treatment. I have also borne in mind that a person may wish to continue to receive treatment notwithstanding the presence of profound disability and that the court cannot simply assume that a profoundly disabled child will not wish to lead a life affected by disability. However, against these matters, I am satisfied that I must also have regard to the fact that Alta's likely attitude to treatment would be influenced by the fact that the prospect facing her if treatment is maintained is one of continued medical intervention that will do not more than maintain her in a moribund state with no awareness, with no prospect of improvement or recovery, the certainty of further physical deterioration and, as I have found above, in a situation of consistent pain. Within this context, in discharging the difficult task of asking myself what Alta's attitude to continued life sustaining treatment would be likely to be, I am satisfied that, in circumstances where she has not developed any understanding of the faith into which she was born, and giving due weight to the fact that a child's attitude may be, and often is influenced by the views, beliefs and guidance of his or her parents, it is more likely than not that Alta's point of view would be that continued life sustaining treatment would not be acceptable to her."
"However, the sanctity of Alta's life is not, within the context of the secular laws that this court must apply, absolute. It may, on the facts of an individual case, give way to countervailing factors. In short, the presumption in favour of taking all steps to preserve life, whilst strong, is also rebuttable. That this is so recognises that life cannot be, and indeed should not be preserved at all costs."
"In any event, I am satisfied that even were there a detailed proposal for transfer available to the court, having regard to the court's findings with respect to Alta's experience of pain and to the courts findings as to her prognosis, it cannot be said to be in Alta's best interests to be transferred to Israel for life sustaining treatment to continue."
"I am satisfied that the burden of Alta's underlying condition, generating as it does an experience of consistent pain for Alta and leaving her as it does in a state of perpetual darkness and silence, acts to overcome the benefits in sustaining her life. In the circumstances, and having examined Alta's best interests from a broad perspective, encompassing medical, emotional, sensory and instinctive considerations, and having paid due regard to the fundamental, but not immutable principle of the sanctity of life, as well as the parents' deeply held religious convictions, it is with deep regret that I am satisfied that it is not in Alta's best interests for life sustaining medical treatment to be continued and in her best interests for that treatment now to be withdrawn and to be moved to a palliative care regime."
"Unless it orders otherwise, the appeal court will not receive (a) oral evidence or (b) evidence which was not before the lower court."
"37 … It would be wrong to say that the future of every child who is within the jurisdiction of our courts should be decided according to a conception of child welfare which exactly corresponds to that which is current here. In a world which values difference, one culture is not inevitably to be preferred to another…. 38 …. There is nothing in those principles which prevents a court from giving great weight to the culture in which a child has been brought up when deciding how and where he will fare best in the future. Our own society is a multi-cultural one…."
"A court, in all the circumstances mentioned in subsection (4)(a) … is as respects each parent within subsection (6)(a) to presume, unless the contrary is shown, that involvement of that parent in the life of the child concerned will further the child's welfare."
"The circumstances are that: (a) the court is considering whether to make … a section 8 order, and the making … of the order is opposed by any party to the proceedings …."
"In subsection (2A) 'parent' means parent of the child concerned and, for the purposes of the subsection, a parent of the child concerned (a) is within this paragraph if that parent can be involved in the child's life in a way that does not put the child at risk of suffering harm; and (b) is to be treated as being within paragraph (a) unless there is some evidence before the court in the particular proceedings to suggest that involvement of that parent in the child's life would put the child at risk of suffering harm whatever the form of involvement."
"What on its face looks like a general policy which applies to everyone equally may in fact have an unequal impact on a minority. In other words, to treat everyone in the same way is not necessarily to treat them equally. Uniformity is not the same thing as equality."
"Hence our law does not start from any a priori assumptions about what is best for any individual child. It looks at the child and weighs a number of factors in the balance, now set out in the well-known 'check-list' insection 1(3) of the Children Act 1989 ; these include his own wishes and feelings, his physical, emotional and educational needs and the relative capacities of the adults around him to meet those needs, the effect of change, his own characteristics and background, including his ethnicity, culture and religion, and any harm he has suffered or risks suffering in the future. There is nothing in those principles which prevents a court from giving great weight to the culture in which a child has been brought up when deciding how and where he will fare best in the future. Our own society is a multi-cultural one. But looking at it from the child's point of view, as we all try to do, it may sometimes be necessary to resolve or diffuse a clash between the differing cultures within his own family."