“…the focus is on whether it is in the patient's best interests to give the treatment, rather than on 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 that they have acted reasonably and without negligence) the clinical team will not be in breach of any duty towards the patient if they withhold or withdraw it.” 13. At paragraph 39, Baroness Hale continued: “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.”
“if the judge has correctly directed himself as to the law, as in my view this judge did, an appellate court can only interfere with his decision if satisfied that it was wrong: Re B (A Child) (CareProceedings: Appeal)[2013] UKSC 33 . In a case as sensitive and difficult as this, whichever way the judge's decision goes, an appellate court should be very slow to conclude that he was wrong.”
“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) ….”
“171. …. I accept that there is some force in the Trust’s submission as to the minimal or absent medical benefit in continuing to maintain Tafida with life sustaining treatment. Within this context, a further important factor supportive of the Trust’s application is the fact that the care proposed by the Gaslini Hospital in Italy is substantially the same as that currently being given to Tafida by the Trust and will not result in any substantial improvement in her condition …. 172. Against this, Tafida is more than simply a patient who is the subject of medical treatment. Within this context, the benefits of life-sustaining treatment may extend beyond the merely medical. If the argument in Bland that Anthony Bland felt no pain or awareness and therefore had no interests which suffered from his being kept alive is demonstrated to be a fallacy because, in the words of Hoffman LJ (as he then was), "it assumes that we have no interests except in those things of which we have conscious experience", then the argument that a child who feels no pain and no or minimal awareness can derive no benefit from being kept alive is similarly fallacious in circumstances where, again to echo the words of Hoffman LJ, the foregoing assumption does not accord with many people's intuitive feelings about their lives, and particularly those people who have a strong religious faith. 173. Within this context, and again having regard to the medical consensus 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, the benefits for Tafida of continued life sustaining treatment include being at home, being in the care of her loving and dedicated family, and, insofar as she is minimally aware, gaining from such awareness as she has of those matters. Further, I accept the submission that within the religious and cultural tradition in which Tafida was being raised, and whilst not by itself sufficient to justify the continuation of life sustaining treatment on the basis of Art 9 or otherwise, a further benefit of continued life sustaining treatment is that it permits Tafida to remain alive in accordance with the tenets of the religion in which she was being raised and for which she had begun to demonstrate a basic affinity.”
“… in circumstances where Tafida is not in pain, where the burden of the treatment 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 her being cared for at home on ventilation by her 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 funded care plan to this end, where Tafida can be safely transported to Italy, where the continuation of life-sustaining treatment is consistent with the religious and cultural tenets by which Tafida was being raised and having regard to the sanctity of Tafida's life, this case does in my judgment lie towards the end of the scale where the court should give weight to the reflection that in the last analysis the best interests of every child include an expectation that difficult decisions affecting the length and quality of the child's life will be taken for the child by a parent in the exercise of their parental responsibility. Further, whilst I did not hear detailed submissions on the import ofArt 8 of the ECHR in the context of this case, and whilst the Art 8 rights of the parents are subordinate to the best interests of the child where the two conflict, in the circumstances I have just summarised there is in my judgment a cogent argument that the making of orders the effect of which would be to override the choice made by the parents in the exercise of their parental responsibility would not constitute a necessary and proportionate justification for the interference in their Art 8 rights that would thereby occur.”
“[Pippa] requires a high level of nursing, physiotherapy and technological support. Although management outside of a critical care unit can never be as safe as the 1-1 multiprofessional support that she receives within an intensive care [environment], if certain parameters were in place and conditions were met, it could be possible to manage [Pippa] in a non-intensive care environment.”
“Home care may not be possible due to the high level of nursing and therapeutic input but this is currently not known with certainty. To explore the feasibility of this option would require a tracheostomy and gastrostomy and the introduction of a package of management, tailored to Pippa’s needs that can feasibly be provided by a team of home carers in a non-intensive care environment …. Although she is at the outer limits of possibility, living at home might be possible …. If the clinical trial and move to a step-down unit was successful, I consider it would be in the child’s best interests to then move home with a long term ventilation package of care, as this would give her a more appropriate environment and receive such life-sustaining support and enjoy the daily benefits of close family life.”
“No child mechanically ventilated in a domestic setting receives care of an equivalent standard to that delivered in a Paediatric Critical Care Unit. For a child in [Pippa]’s position, a genuine trial of the feasibility of portable mechanical ventilation requires a flexible and pragmatic iterative development of an individualised, structured plan for mechanical ventilation and associated interventions.”
“If this management strategy outlined above is deemed in [Pippa]’s best interests and [Pippa] is successfully cared for in a step down unit or high dependency unit, I agree with Dr Wallis that a long term ventilation package of care should be sought. In my opinion being in the home rather than a critical care unit would provide the daily benefits of close family life, which cannot occur in critical care. As previously stated, the family should have a full understanding that the care provided at home is not to the same standard as within the critical care environment. It is possible that this would mean that PK only has a short period of time at home but the benefit for her would be that she is with all her family. Being with her family is something that is also very difficult at the present time due to the Covid-19 situation.”
“16 In my judgment, it is necessary to determine Pippa’s best interests, and whether to make the declarations sought, in the context of three available options: A. Continuation of life-sustaining mechanical ventilatory support and treatment within a PICU setting. B. A trial of portable ventilation with a view to transition to long term ventilation and life-sustaining treatment at home. C. Withdrawal of life-sustaining mechanical ventilatory support.”
“… the evidence does allow me to consider: (a) The nature of the end goal of long term ventilation and life sustaining treatment at home. (b) The prospect that the trial and transition process would result in the end goal of home care being achieved. (c) What that process would entail for Pippa: what would be the means by which the end would be achieved. By considering those factors, the court can make an assessment of whether it is in Pippa's best interests to embark upon the trial and transition process – option B. It would be wrong in my judgment to focus exclusively on the very first step in that process. The initial trial of portable ventilation is not an end in itself, it is a means to an end, or, more precisely, a necessary but not sufficient means to the end of providing Pippa with life sustaining treatment at home. If it would not be in Pippa's best interests to reach the destination, then it is unlikely to be in her best interests to embark on the journey.”
“a. Pippa has suffered very severe brain damage as a result of ANE. b. She is in a persistent vegetative state ("PVS"). She has no conscious awareness of herself or her environment. c. On the balance of probabilities Pippa cannot experience pain or discomfort. d. On the balance of probabilities Pippa cannot derive any pleasure from her environment or interaction with others. e. Pippa has random movements of her neck, head, and limbs. She has no purposeful movement. She shows no response to visual, auditory, or tactile stimulation. f. She is wholly dependent on others for all her care. g. She has no respiratory effort – she cannot breathe at all – and is wholly reliant on mechanical ventilation. h. She has respiratory instability with frequent desaturations which require specialist nursing and physiotherapy interventions. i. She is doubly incontinent. j. She has cortical blindness. k. Her condition has been static for well over a year and there is no prospect of any improvement.”
“Pippa receives excellent care on the Evelina PICU, but she is vulnerable to profound desaturations or some other complication that could take her life at any time. Predicting her life expectancy with continued long term ventilation on the PICU is difficult, but the balance of the evidence to me was that Pippa would live longer on the PICU than she would if on long term ventilation in a home setting, and whilst she could die at any time, she could live on the PICU for some years yet.”
“44. The manner in which evidence about a trial of portable ventilation and transition to home care has been rolled out has not been very satisfactory. That is not a criticism of the legal representatives. I do however say that Dr Wallis ought to have recognised that his proposal of a trial and transition to home care would require considerably more detailed explanation than he had given prior to the hearing, particularly once he knew that the treating team opposed it. For example, he gave very little further detail in his joint statement with Dr C, responding to some key questions merely by referring back to his first report. As a consequence, although Dr Chatwin had previously raised some issues about potential alterations to Pippa's regime, Dr Wallis gave a great deal of evidence about the process under questioning at the hearing, which he had not previously raised. Even in re-examination he introduced striking new evidence as to the nature of home care. This made it difficult for the Applicant to respond. When witnesses for the Trust were able to respond, their evidence, in turn, prompted further investigation by the Second Respondent, so that even after the hearing had concluded, a fourth report from Dr Chatwin was submitted. After representations by email I ruled against admission of Dr Chatwin's fourth report. It mainly concerned evidence of Pippa's oxygen saturation levels when not desaturating, and other aspects of her past respiratory management, and I do not find such further evidence to be necessary to my determination of the issues in this case.”
“(a) The transition to home care is an iterative process involving a multi-disciplinary team working in conjunction with the family. There will be many obstacles and a positive approach to overcoming them is required if the goal is to be achieved. b. Every stage requires planning and risk assessment, but it has to be accepted that care at home will not be of the same clinical standard as care in the PICU. The care at home will not be optimal but it has to be "good enough". To embark on the process all have to agree that a lower standard of care is the price worth paying for the reward of caring for the child in a more nurturing environment, and one that suits the family. c. The first step would be to trial Pippa on a portable ventilator. She would remain in the PICU during this trial supported by the nurses and therapists who currently manage her, and all other equipment presently used. d. Although Dr Wallis initially maintained that it would be "pointless" to embark on the trial without first performing a tracheostomy, he relented at the hearing and said that the trial could be performed with the ETT still in situ. e. If, but only if, Pippa achieved stability during a two week period on a portable ventilator, which would include an absence of profound desaturations, she could then move to a non-PICU setting .... The initial trial stage might take more than two weeks if the view was taken that some of the settings on the ventilator could be altered, or other measures taken, to promote stability. f. If it had not already been performed, a tracheostomy would be performed soon after transfer to the transitional unit. At some stage thereafter Pippa would have to undergo a gastrostomy. g. The non-PICU setting to which Pippa could be moved would still be within hospital and all equipment such as anaesthetic bagging and the cough assist machine, and therapies would be available. The next process is a lengthy one, lasting months. Pippa would remain on a portable ventilator barring any further setbacks. Step by step adjustments to her care would be made to replicate the care that would be available and needed at home. Plans for funding for her care, recruitment of a nursing team etc. could begin during this stage…. h. When home care has been replicated, and the home care package is assembled, Pippa would be ready to be transferred home …. i. … [W]ere Pippa successfully transferred to home care, her life expectancy would be modest. She would be susceptible to complications including profound saturations that could not be as readily reversed in the community as they could in a PICU. When asked how long he would expect Pippa to survive if transferred to home care, Dr Playfor told me ‘many weeks …. some months’.” some months’.”
“There has been no assessment of the suitability of Pippa's family's home for accommodating her, her equipment, and the necessary care team. Hence, I have no reassurance that her envisaged package of home care is practically achievable. Whilst appreciating that the CCG will not address Pippa's needs and funding decisions until necessary, it does strike me as a gap in the evidence that no-one has made even a cursory assessment of the suitability of Pippa's family home as a venue for her long term care. The Second Respondent's case is focused on Pippa's best interests being served by her being cared for at her home, not in some other community setting but I have no evidence that her home is suitable to accommodate her, her mother and brother, all the equipment needed, and a team of nurses who would need space and facilities of their own in order to function effectively.”
“I do not think it necessary or appropriate for me to make detailed findings as to whether the proposed adjustments should be made to how Pippa is cared for now or in the future, how the trial and transition process should be managed, or how the prospects of transition to home care could be optimised. It is not the court's function to give detailed directions as to a patient's medical management. On the other hand, it is necessary for me to form a view on all the evidence of the prospects of success in transferring Pippa to home care. Dr Wallis proposed that such a transition should be attempted, and I take full account of his experience and his evidence to the court. I accept that there may be several adjustments that could be made to optimise the chances of success of the trial and transition, but the trial and transition could only succeed if Pippa's current tendency to suffer intermittent profound desaturations ceased or was significantly reduced.”
“A distinctive difference in attitude to transition emerged during the hearing. The Second Respondent's experts were more inclined to accept risk, to acknowledge that care at home could not and need not be optimal – it only had to be "good enough". If the alternative is withdrawal of ventilation in the PICU and death, then, they contended, it is worth taking the chance that transition to home care might work even if the chance is as low as 25%. In contrast the treating clinicians were adverse to giving Pippa less than optimal care and concerned that the proposed 41. process was based on wishful thinking rather than the reality of Pippa's unstable respiratory condition.”
“She has had only a handful of respiratory infections during nearly two years on the PICU. Considerable thought, effort, and resources have been put into managing her complex respiratory problems. Even so, she has suffered numerous profound desaturations, and would have suffered more had her desaturations not been intensively and expertly managed. Against that background it is difficult to see how transfer to a less sophisticated ventilator and the removal of some of the interventions that have so far protected Pippa, could realistically alleviate her respiratory problems or lead to fewer or less profound desaturations, even with adjustments to her management. I give weight to the direct knowledge of managing Pippa that the Trust's witnesses have and which informs their pessimism about the prospects of a trial and transition to home care. I also take into account the chances of a fatal complication occurring during the transition period, and the practical difficulties in setting up a care regime at home. Weighing all the evidence I have read and heard, I am satisfied that the chances of Pippa being able to be transferred to long term ventilation at home are remote. There is only a remote possibility of the trial and transition succeeding such that she could be discharged home.”
“(a) It is "God's law" – by which I understand her to mean that there is a duty to preserve Pippa's God-given life. I received no other evidence to suggest that Ms Parfitt or her family actively practise within any faith, or hold other strong ethical views based on religious or secular teaching or values. (b) Some patients recover from severe brain injury. Pippa made progress after her first episode of ANE, and she has made some recovery since January 2019. She has the basis from which further recovery could be made. (c) The home environment and her mother's care are the contexts most likely to allow Pippa to achieve further recovery. (d) Keeping Pippa alive would allow her to enjoy the benefits of any developments in medical science. (e) Pippa will benefit from being in the warm embrace of her family in a familiar home. Her brother would return home – he is currently looked after by relatives in their own home - and Pippa would be reunited with him.”
“I base this opinion on my unique intricate maternal knowledge of my daughter and the extent to which she is presently responding which I see daily.” 45. The judge recorded that none of the medical witnesses, including those on whose evidence the mother relied, believed it likely that Pippa will make any form of recovery. Dr Playfor advised the court that changes in Pippa’s movements represented the neurological evolution and maturation of the underlying brain injury rather than any form of improvement in her condition. As for keeping her alive to allow her to enjoy the benefits of any developments in medical science, the judge observed (at paragraph 59): “no court could sanction giving a child life-sustaining treatment merely because there might be some medical breakthrough from which they could benefit at some indefinable point in the future.”
“There can be little doubt that any young child who is loved and well cared for, would want to be at home with their family rather than in a hospital. However, it is not possible to know what Pippa's wishes and feelings would be in relation to the continuation of long term ventilation and other life sustaining treatment needed to allow her to attempt a transition to home care.”
“there is, in law, no rule that life must be preserved in all circumstances and at whatever cost to the child. The presumption that life should be preserved is not a determinative factor and must be considered together with other factors relevant to Pippa's welfare and best interests.”
“it would be an error to allow the absence of pain or any sensation to prevent a wider consideration of welfare incorporating a consideration of physical and other harm or detriment to Pippa, from her condition, and from the treatments she needs to keep her alive.”
“In the light of these considerations, I do take into account the detriment to Pippa's welfare caused by her condition and the treatment for it, even though she is unaware of that detriment. She is a five year old girl who has lost virtually all her functioning. She is constantly subject to invasions of her person to keep her alive. It is insufficient to view her condition as depriving her of benefit. Her condition and the treatment it necessitates are significant burdens. Even if one discounted these factors in the welfare assessment, on the grounds that Pippa has no conscious awareness of them, they ought to be taken into account in the broad assessment of her interests. It must be relevant to any assessment of her interests that she has such grave loss of function and requires such intensive and intrusive treatment to preserve her life.”
“Pippa cannot derive any pleasure from life because she has no conscious awareness. Are there nevertheless other benefits to her, from the prolongation of her life, such as preserving her dignity, or allowing her to remain the focus of the love of her family, that the court should take into account? Or, if those are not benefits to her welfare, are they matters that should nevertheless be considered when assessing her best interests?”
“5.18. Although severely disabled. with no demonstrable awareness of the environment and entirely dependent on the care of others, [Pippa]'s life has inherent value; it is nurtured and precious to her mother, sibling and wider family. [Pippa]s existence can be said to add, admittedly in a modest manner. to the body of collective human experience. With a tracheostomy and the provision of a portable mechanical ventilator, it should be possible, with considerable multi-disciplinary training and support, for Pippa to be cared for at home by her dedicated family in a manner consistent with values with which she has been raised. I note the observation of MacDonald J in [Raqeeb] that the prospect of being cared for at home is a relevant factor in determining the burden of indignity ….” 47.In response to this evidence the judge commented: “81. I would respectfully agree with Dr Playfor except that I would replace the word "modest". With "significant". A child such as Pippa can contribute significantly to the lives of others and to the body of collective human experience. She is an exceptional child who has inspired exceptional behaviour from others: the selfless devotion of her mother, the sacrifices of her brother, the loving support of other family members, the dedication and skill of the PICU doctors, nurses, and therapists…. 82. I however, have difficulty in accepting Dr Playfor's analysis, not least because MacDonald J found that although it was likely that Tafida Raqeeb could not perceive pain in her resting or standard state [162], she had "retained a minimal level of awareness" [161]. As MacDonald J said, in medical cases like Pippa's and Tafida Raqeeb's, where there can be no absolute certainty as to their subjective experience, it is important to maintain fidelity to the standard of proof, particularly when the decisions for the court are so grave [175]. Applying the standard of proof, this court must assess Pippa's best interests on the basis that she has no conscious awareness, whereas MacDonald J assessed Tafida Raqeeb's best interests on the basis that she retained minimal awareness. In the present case there is a high degree of probability that Pippa has no conscious awareness. This distinction affects consideration of the benefits to Pippa of human interaction and loving care from the family.”
“Insofar as a plea to respect the "inherent value of life" or to the "innate dignity of life" directs the court's attention to the presumption that life should be preserved, it is uncontroversial.”
“Insofar as Dr Playfor's view is that the value of Pippa's life can be seen in what she can bring to others, I am afraid that I do not accept that I should take that into account in an assessment of her welfare or her best interests. Her life does have worth and value which can be seen most clearly in what it brings to others, but the assessment of best interests has to be made from the point of view of the child. Pippa's condition renders her unaware of the benefits she brings to others. Not only is her welfare my paramount consideration, but it would be wrong, in my judgment, to take into account the welfare of others when determining her best interests.”
“The concept of "dignity" to which MacDonald J referred in Raqeebat [176] to [177] (above) and which has influenced the view of Dr Playfor, is, I believe, problematic and does not assist me in identifying what is in Pippa's best interests. In an adult or older child the concept of dignity might be linked to their exercise of autonomy and be a crucial factor in determining what is in their best interests, but that factor does not apply in the case of a young child like Pippa, whose values, beliefs, and wishes cannot reliably be ascertained or inferred. Perhaps we all think we can recognise human dignity when we see it, but there is obviously a high degree of subjectivity involved in describing someone's life or death as having dignity …. There is a wide range of opinion as to what constitutes a dignified death …. I take into account the views of Pippa's mother and of others about her best interests, but given the very different ideas expressed to the court about what would constitute dignity for Pippa in life and in her dying, I shall not presume to adopt some supposedly objective concept of dignity to determine her best interests.”
“88. So what is the "impalpable factor" or other benefit that continuation of life will bring to Pippa beyond the prolongation of life itself, beyond the advantages or comfort it might bring to others, and beyond the subjective and malleable concept of dignity? Dr Wallis and Dr Playfor cannot find any benefit in continued care in the PICU, even though Pippa would continue to be the focus of the unconditional love of her mother and wider family, and to receive exceptional family, medical and nursing care. Counsel for Ms Parfitt do not point to any such benefits in their submissions. Likewise, I cannot find any palpable or impalpable benefit to Pippa from prolonging her life in the PICU. Is it inconsistent to find that a young child with no conscious awareness suffers burdens but enjoys no benefits from the prolongation of life? I do not believe so. The profound loss of function and the daily invasion of her bodily integrity necessary to prolong her life constitute objectively identifiable burdens on Pippa's person. Factors that might constitute some kind of benefit to an adult or young person, such as affirmation of deeply held values, or respect for autonomy, do not apply to a very young child such as Pippa.”
“Accordingly, the court should take into account the wishes of those close to Pippa to care for her at home but only as part of the broad assessment of Pippa's best interests, and without detracting from the fundamental principles that Pippa's welfare is my paramount consideration and that the assessment of best interests is made from her perspective. If it would be contrary to Pippa's best interests to be cared for on long term ventilation at home, then it would be lawful not to accede to her family's wishes in that regard, and unlawful to do so. Their Article 8 rights would not be contravened. Dr Playfor, Dr Wallis, and many other people might think that when a child can feel no pain, the courts should seek a solution that gives the most comfort to the child's family, and that there is a cruelty in depriving them of that comfort and curtailing the life of the child they cherish. But the law seems to me to be clear that the benefits that Pippa has brought, and may continue to bring, to others, and the satisfaction of the wishes of a child's family, are not the focus of the court's attention. It is her welfare that is paramount, not the welfare of others, and her best interests that are the court's concern.”
“It is agreed by all the medical witnesses that Pippa has no conscious awareness of her environment or interactions with others. Therefore, there would be no benefit to her from being in a home bedroom as opposed to a hospital unit. Family members may be able to spend more time with her at home in a more peaceful and welcoming environment, but she would not be aware of their visits or of the benefit to others. She would not be aware of any of the changes in her environment or in her care regime.”
“Any proper assessment of welfare in a case involving life sustaining treatment ought to take into account the nature and extent of the interventions necessary to keep the patient alive. Clearly much greater weight should be given to the harm caused by those interventions if the patient can feel pain or discomfort. If Pippa were able to experience pain and discomfort when undergoing the multiple invasive procedures she undergoes each day, that would be highly material to the assessment of her welfare. But her loss of conscious awareness does not mean that those interventions can now be wholly disregarded. In Pippa's own case she not only requires artificial ventilation, nutrition, and hydration, but, day and night, she requires other interventions including suctioning, bagging, proning, and use of the cough assist machine, as well as other less frequent interventions such as saline lavage. Both her ongoing condition and her necessary treatments in the PICU constitute burdens upon her person notwithstanding her lack of conscious awareness. In any event, the absence of pain is not the same as the absence of harm. The fact that a person has no conscious awareness does not give their clinicians, or anyone else, licence to perform procedures on them irrespective of their benefit. Compensation payments for "loss of amenity" have been made to patients who are in a coma because the law recognises that even the fully unconscious individual may experience a loss of function and a diminished quality of life even if they do not suffer pain – Wise v. Kaye [1962] 1 Q.B.638 and H. West & SonsLtd. v. Shephard[1964] A.C.326, applied in Lim Poh Choo vCamden & Islington Area Health Authority[1980] AC 174 .The losses of freedom, function, and ability to enjoy childhood, that severe disability, including severe brain damage, cause someone such as Pippa, are a form of harm which should be considered in assessing her welfare, whether or not they can feel pain and whether or not they have any conscious awareness.”
“Accordingly, it would be an error to allow the absence of pain or of any sensation to prevent a wider consideration of welfare incorporating a consideration of physical and other harm or detriment to Pippa, from her condition, and from the treatments she needs to keep her alive.”
“it has to be accepted that care at home will not be of the same clinical standard as care in the PICU. The care at home will not be optimal but it has to be "good enough". To embark on the process all have to agree that a lower standard of care is the price worth paying for the reward of caring for the child in a more nurturing environment, and one that suits the family.”
“There is no doubt that, in the exercise of its wardship jurisdiction, the first and paramount consideration is the well being, welfare or interest (each expression occasionally used, but each, for this purpose, synonymous) of the … ward ….”
“The judge must decide what is in the child's best interests. In making that decision, the welfare of the child is paramount … The term "best interests" encompasses medical, emotional, and all other welfare issues.” 77. In addition, as I have already mentioned, in the Aintree case, Baroness Hale said that: “in considering the best interests of this particular patient … decision-makers must look at his welfare in the widest sense.”
“Taking a broad view of Pippa’s medical and non-medical interests, but with her welfare as the paramount consideration, I conclude that it is not in her best interests to continue to receive mechanical ventilation on the PICU.” 79. Later, in expressing his ultimate conclusion on the proposed trial of home ventilation, the judge said (at paragraph 106): “Standing back to consider and balance all welfare considerations and factors affecting best interests, I am sure that it would be detrimental to Pippa’s welfare and contrary to her best interests to receive long term ventilation at home, assuming that homecare is a feasible option.”
“The welfare of this child depends upon his mother. The practical considerations of her ability to cope with supporting the child in the face of her belief that this course is not right for him, the requirement to return probably for a long period to this country, either to leave the father behind and lose his support or to require him to give up his present job and seek one in England were not put by the judge into the balance when he made his decision.” 87. Although she noted the “very strong presumption in favour of a course of action which will prolong life”, Butler-Sloss LJ (at page 512) stressed that “on the most unusual facts of this case with the enormous significance of the close attachment between the mother and baby, the court is not concerned with the reasonableness of the mother’s refusal to consent but with the consequences of that refusal and whether it is in the best interests of C for this court in effect to direct the mother to take on this total commitment where she does not agree with the course proposed …. The prospect of forcing the devoted mother of this young baby to the consequences of this major invasive surgery lead me to the conclusion, after much anxious deliberation, that it is not in the best interests of this child to give consent and require him to return to England for the purpose of undergoing liver transplantation. I believe that the best interests of this child require that his future treatment should be left in the hands of his devoted parents.”
“All these cases depend on their own facts and render generalisations – tempting though they may be to the legal or social analyst – wholly out of place. It can only be said safely that there is a scale, at one end of which lies the clear case where parental opposition to medical intervention is prompted by scruple or dogma of a kind which is patently irreconcilable with principles of child health and welfare widely accepted by the generality of mankind; and that at the other end lie highly problematic cases where there is genuine scope for a difference of view between parent and judge. In both situations it is the duty of the judge to allow the court’s own opinion to prevail in the perceived paramount interests of the child concerned, but in cases at the latter end of the scale, there must be a likelihood (though never of course certainty) that the greater the scope for genuine debate between one view and another the stronger will be inclination of the court to be influenced by a reflection that in the last analysis the best interests of every child include an expectation that difficult decisions affecting the length and quality of its life will be taken for it by the parent to whom its care has been entrusted by nature.”
“The view of the parents in a liver transplant case has two aspects. First, if, as here, the parents are devoted and responsible and have the best interests of their child in mind, then their views are to be taken into account and accorded weight and respect by the court when reaching its decision. Secondly, the views of the parents have a clinical significance because in the absence of parental belief that a transplant is the right procedure for the child, the prospects of a successful outcome are diminished.”
“Under the accepted approach to best interests cases the weight to be attached to the views of a child’s parents may vary and, where there is real scope for debate as between two treatment options, the views of the parents may well be very important.” 91. Having cited a number of authorities, including Re T, McFarlane LJ concluded: “94. …. Even if such a case may fall at the more favourable end of the spectrum described by Waite LJ, the court does not evaluate the reasonableness of the parents’ case, or, as these authorities indicate, introduce any other factor or filter before it embarks upon deciding what is in the best interests of the child. 95. When thoughtful, caring, and responsible parents are putting forward a viable option for the care of their child, the court will look keenly at that option, in the same way that a court in family proceedings, when it gets to the welfare stage of any case, looks at the realistic options that are before it. The court evaluates the nitty-gritty detail of each option from the child’s perspective. It does not prefer any particular option simply because it is put forward by a parent or by a local authority. The judge decides what is in the best interests of the child by looking at the case entirely through eyes focused on the child’s welfare and focused upon the merits and drawbacks of the particular options that are being presented to the court. 96. If one option is favoured by a parent, that may give it weight, or as Waite LJ put it, incline the court to be ‘influenced by reflection that in the last analysis, the best interests of every child, include an expectation that difficult decisions affecting the length and quality of its life will be taken for it by the parent to whom its care has been entrusted by nature’. Notwithstanding that that is the case, in the end it is the judge who has to choose the best course for a child.”
“It goes without saying that in many cases, all other things being equal, the views of the parents will be respected and are likely to be determinative. Very many cases involving children with these tragic conditions never come to court because a way forward is agreed as a result of mutual respect between the family members and the hospital, but it is well recognised that parents in the appalling position that these and other parents can find themselves may lose their objectivity and be willing to "try anything", even if, when viewed objectively, their preferred option is not in a child's best interests. 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.”
“… in circumstances where Tafida is not in pain, where the burden of the treatment 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 her being cared for at home on ventilation by her 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 funded care plan to this end, where Tafida can be safely transported to Italy, where the continuation of life-sustaining treatment is consistent with the religious and cultural tenets by which Tafida was being raised and having regard to the sanctity of Tafida's life, this case does in my judgment lie towards the end of the scale where the court should give weight to the reflection that in the last analysis the best interests of every child include an expectation that difficult decisions affecting the length and quality of the child's life will be taken for the child by a parent in the exercise of their parental responsibility.”
“Part 15 of theCourt of Protection Rules 2017 provides that the court has the power to control the introduction of expert evidence and is under a duty to restrict expert evidence to what is necessary to assist the court to resolve the issues in the proceedings. A court-sanctioned expert has an overriding duty to the court. Respect for the procedural rules is of particular importance when the proceedings are of gravity. In the present case, the Court made appropriate directions for independent expert evidence …. These are not rolling proceedings which a dissatisfied party can continue at will. Far from there being any unfairness in the refusal to permit the instruction of a further unidentified expert, there is in my view a real risk of harm to the protected party and of unfairness to other parties if litigation is conducted in such an unprincipled way.”
“The issues addressed by Dr Chatwin in this fourth report concern adjustments to Pippa’s management which might affect a transition to home care, and whether and to what extent they have already been attempted or made. I have already received evidence from witnesses called by both the applicant and the second respondent in relation to those adjustments and the overall likelihood of transition being achieved. I have sufficient evidence on these matters to enable me determine the issues in this case, and to do so fairly …. It would be disproportionate to admit the evidence: to do so would lead to yet further evidence being adduced in response …. The issues addressed by Dr Chatwin in this fourth report are not, in my judgment, at all central to … the obviously very important issues that the court must determine.”
“there is obviously a high degree of subjectivity involved in describing someone’s life or death as having dignity” and cited authorities in which the protection of dignity had been deployed to support decisions both to continue treatment and to withhold it. He concluded: “given the very different ideas expressed to the court about what would constitute dignity for Pippa in life and in her dying, I shall not presume to adopt some supposedly objective concept of dignity to determine her best interests.”