Guy's and St Thomas' Children's NHS FoundationTrust & Anor v Knight & Anor

Pippa Knight is a much loved five year old girl. Her father died three years ago but she has the most dedicated and loving support of her mother, Paula Parfitt, her older brother, aged 7, and her maternal grandparents, uncle, and aunt. Together they form what Ms Parfitt describes as “powerful unit of strength for her and for each other.”

That strength has been needed. Pippa is gravely unwell. She has severe brain damage and has been kept alive by mechanical ventilation through a nasal endotracheal tube in the paediatric intensive care unit at the Evelina London Children’s Hospital since January 2019. Expert neurologists and intensivists agree that she probably feels no pain and experiences no pleasure, that she is not conscious of her environment, and that there is no prospect of improvement in her condition. The NHS Trust responsible for Pippa’s care and treatment, whose doctors, nurses and therapists have exercised exceptional skill in looking after her, considers that she has been through enough. It asks this court to exercise its inherent jurisdiction to declare that it is lawful and in Pippa’s best interests that:

Ms Parfitt opposes the Trust’s application. The evidence shows that there have been many meetings between Ms Parfitt and the treating team. She is aware of all the expert medical opinions that have been given in this case, but unlike the Trust, she believes that Pippa has made some progress since January 2019, that she has awareness of her family and can derive pleasure from being with them and from touch and other sensations, and that it is in her best interests to continue on long term ventilation. In reliance on expert evidence, including from Dr Colin Wallis, Consultant Respiratory Physician, Ms Parfitt proposes that Pippa should now undergo a trial of portable ventilation, a tracheostomy, and management in a transition unit with a view to her being discharged from hospital, to be cared for at home.

Pippa is represented by her children’s guardian, Lauren Doyle of the Cafcass High Court Team. After much careful consideration she supports the Trust’s application.

Ms Parfitt does not seek anonymity for herself or for Pippa. The hearing before me was held in public and in person, with two witnesses giving evidence by video link. The parties and the court have had the benefit of experienced Counsel: Mr Mylonas QC for the Applicant, Mr Davy for the First Respondent, and Mr Sachdeva QC and Ms ButlerCole QC for the Second Respondent. I am grateful to them and to their instructing solicitors for the care and skill they have exercised in presenting this case.

The dispute as to whether continuing ventilation should or should not be given to Pippa has been brought to the court for determination because Ms Parfitt and those who are treating Pippa have been unable to come to an agreement. The Trust has carried out best interest reviews. It has sought second opinions from independent consultants. Its Ethics Committee has given its opinion on whether long term ventilation is in Pippa’s best interests. Mediation has taken place but was not successful. This case is of an exceptional nature – very few children are in Pippa’s condition – and it is the exceptional cases that tend to come before the courts. The Trust’s application was made in March 2020 but it has taken several months to arrive at a final hearing. This is in part due to the Covid-19 pandemic, but also because of the nature and extent of the expert evidence in the case. On 22 July 2020, Judd J gave permission to the Second Respondent to rely on six expert witnesses. One of those, Dr Wallis, proposed a trial of portable ventilation with a view to transferring Pippa home. The feasibility of that proposal, and the conditions under which a trial should be conducted, have taken time to investigate.

Since the parties bring Pippa’s case to court, the court must make a determination – it has a duty to do so. The court is independent of the Trust, of the NHS, and of Ms Parfitt. The court’s power is to decide whether a course of treatment is lawful or unlawful. It has no power to require doctors to carry out a medical procedure against their professional judgment. The court’s decisions are not based on what the particular judge would decide for themselves, or what outcome they would want for their own loved ones. Nor are the judge’s own ethical or religious beliefs relevant. Rather, the court seeks to apply the law to the facts of the individual case. The question for the court is what is in Pippa’s best interests.

On the first afternoon of the hearing, Ms Doyle and I visited Pippa on the PICU at the Evelina. Her mother was where she can usually be found: at her daughter’s bedside. I had expected that any visit would be by a video link of some kind, given the current Covid-19 pandemic, but Ms Parfitt wanted me to attend in person and the Trust was happy to accommodate the visit with suitable safeguards being taken. The purpose of the visit was not to gather evidence, but to see Pippa in the environment in which she is cared for. The visit helped to connect the forensic process within the court room with the real circumstances in which Pippa and her mother find themselves.

In court, I heard powerful oral evidence from Ms Parfitt. I have been provided with written evidence from Ms Doyle, from a number of medical and nursing personnel at the hospital, and from the Head of Placements for Children and Young People at the Clinical Commissioning Group for Pippa’s home location. I have also had the benefit of extensive expert evidence as follows:

The background to this application is heart-rending. Pippa was born on 20 April 2015. As a very young child she was affectionate, reaching out to her parents and others for cuddles. She had a strong bond with her brother whom she idolised. She developed normally until December 2016 when her mother took her to Medway Hospital because she was unwell. She deteriorated overnight and began to suffer seizures. She was transferred to the Paediatric Intensive Care Unit (“PICU”) at St George’s Hospital, London, and was diagnosed with acute necrotising encephalopathy (“ANE”), a rare condition in which an acute febrile disease, usually a viral infection such as influenza, is followed rapidly by seizures, disturbance of consciousness, and ultimately brain damage (encephalopathy). Pippa remained on the PICU until 10 January 2017, when she was moved to the paediatric ward. A month later she was transferred back to Medway Hospital, and after another month she was transferred to a neuro-rehabilitation unit where she remained for a further three months. On discharge home Pippa was severely compromised. She had a four-limb motor disorder with a predominant dystonia. She required nasogastric tube feeding and was thought to have cognitive impairment.

Pippa went home on 9 June 2017 to be looked after by her mother. Her father had lost a young son from a previous relationship to meningitis. He found it difficult to cope with the fact that another of his children was suffering so grievously. A few days after Pippa’s discharge home, he took his own life. Ms Parfitt had to cope not only with her own bereavement, but with two bereaved children, one of whom was newly discharged from rehabilitation and severely disabled.

In late February 2018 Pippa required in-patient care at Medway Hospital for 18 days following a viral infection, but she did not require intensive treatment and she was able to return home. She made progress under the care of her mother at home. She gradually regained some strength and could walk a few metres with a walking frame (her left leg was weaker and she had difficulties with balance). She regained the ability to crawl and she could ride a tricycle with support. She had limited verbal communication but was interactive in play.

Tragically, in January 2019 ANE struck again. On 14 January 2019 Pippa was admitted to Medway Hospital with a fever but she deteriorated. Her Glasgow Coma Score fell to 3/15 indicating a catastrophic loss of consciousness. She was transferred to the

Pippa’s mother, Ms Parfitt, lives in hospital accommodation and spends as many as sixteen hours most days by Pippa’s bedside. Pippa currently receives video calls from her brother and grandparents, and Ms Parfitt’s brother and grandmother often sit with Pippa for long hours when Ms Parfitt is resting. The fact that Ms Parfitt has not been wholly ground down by her experiences is a tribute to her resilience and dedication. As Pippa’s children’s guardian Ms Doyle has said, she is “the most committed of mothers with a strength and mindset that I cannot comprehend.”

The Trust seeks three declarations as set out above. Mr Mylonas QC for the Trust began his closing written submissions with the following:

“There is one primary issue for the Court’s determination – is it in Pippa’s best interests (and therefore lawful) for life sustaining treatment to be withdrawn?”

In their opening position statement, Mr Sachdeva QC and Ms Butler-Cole QC for Ms Parfitt, contended that the choice for the court is “death now in hospital, or death in the future after a period at home.” In fact, the questions for the court are about treatment and the withdrawal of treatment, not about choosing death, even if death is the inevitable consequence of withdrawal of ventilation. In Airedale NHS Trust v Bland [1993] AC 789, Lord Goff of Chieveley (with whose judgment Lord Keith of Kinkel and Lord Lowry expressly agreed) pointed out that,

“the question is not whether it is in the best interests of the patient that he should die. The question is whether it is in the best interests of the patient that his life should be prolonged by the continuance of this form of medical treatment.” [p 868]

The Second Respondent’s case is not that it is in Pippa’s best interests to be transferred home with a view to withdrawal of ventilation, but rather that steps should be taken to determine whether long term ventilation can be provided at home. As such, “death in the future after a period [of long term ventilation] at home” is not a choice currently available, because no-one yet knows whether Pippa can be given ventilation at home for anything beyond a few hours, or a few days at most. The Second Respondent’s closing written submissions better reflect this fact. They began:

“This case is about whether Pippa should be permitted to undergo a trial which will reveal whether she is sufficiently stable to be sent home to spend her last weeks or months in the company of her devoted mother and brother.”

In my judgement, it is necessary to determine Pippa’s best interests, and whether to make the declarations sought, in the context of three available options:

As for option B, in my judgment I have to consider Pippa’s best interests as they are now. I cannot know the outcome of a trial of portable ventilation or of the potentially long and detailed process of transition to home care. It is not possible to make multiple declarations about her best interests applicable to the many differing circumstances that might arise as the trial and then the transition process progressed. However, the evidence does allow me to consider:

Option A is not a hypothetical option, it is the ongoing reality. Option B is an available option and is urged upon the court by the Second Respondent. The Applicant and First Respondent submit that ongoing long term ventilation is not in Pippa’s best interests, wherever it may be given, and that Option C is in her best interests. These are the options available that I should consider when assessing Pippa’s best interests.

In the remainder of this judgment I shall consider the legal framework in which the court’s determinations are to be made; summarise the evidence as to Pippa’s condition and management; consider the steps that would need to be taken to discharge her into home care, the chances of those steps being successful, and what home care would comprise; and then examine Pippa’s best interests in the context of the three options I have identified.

The law applicable to decisions of the kind this court is required to make in respect of a young child, has been set out in numerous cases. The key principles articulated by the Court of Appeal in Portsmouth Hospitals NHS Trust v Wyatt and Anor [2005] EWCA Civ 1181, and by Holman J in An NHS Trust v MB [2006] EWHC 507, continue to guide the courts today. They are that,

More recently, in Re A (A Child) [2016] EWCA Civ 759, the Court of Appeal said at [31]:

“Whilst its application requires sensitivity and care of the highest order, the law relating to applications to withdraw life sustaining treatment is now clear and well established. It can be summed up with economy by reference to two paragraphs from the speech of Baroness Hale in what is generally regarded as the leading case on the topic, notwithstanding that it related to an adult, against the backdrop of the Mental Capacity Act 2005. In Aintree University Hospital NHS Foundation Trust v James[2013] UKSC 67;[2014] AC 591Baroness Hale said at paragraph 22:-

"Hence the focus is on whether it is in the patient's best interests to give the treatment rather than whether it is in his best interests to withhold or withdraw it. If the treatment is not in his best interests, the court will not be able to give its consent on his behalf and it will follow that it will be lawful to withhold or withdraw it. Indeed, it will follow that it will not be lawful to give it. It also follows that (provided of course they have acted reasonably and without negligence) the clinical team will not be in breach of any duty toward the patient if they withhold or withdraw it."

And from paragraph 39:-

"The most that can be said, therefore, is that in considering the best interests of this particular patient at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude towards the treatment is or would be likely to be; and they must consult others who are looking after him or are interested in his welfare, in particular for their view of what his attitude would be."

In An NHS Trust v MB, Holman J said this of parental views,

“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.” [16]

To parents of a child whose life is in the balance, this may sound a harsh doctrine, but it seeks to emphasise that the child’s welfare is paramount. When a child’s parents and the medical personnel treating a child disagree about whether certain treatment is in a child’s best interests, neither has a veto – the court, taking an independent and objective view of the evidence, is required to decide what is in the child’s best interests. Nevertheless, authority from the European Court of Human Rights does suggest that parental wishes are a factor that should be taken into account. Pippa has a right to life under Article 2 of the European Convention on Human Rights. Art 2 imposes a positive obligation on the state to protect life but, although that is a fundamental right, withdrawal of life sustaining treatment is not a contravention of Art 2 if certain requirements are met. In Gard and Others v. the United Kingdom - 39793/17 (Decision [2017] ECHR 605 (27 June 2017) the ECtHR identified those requirements:

“[80] In addressing the question of the administering or withdrawal of medical treatment … the Court has taken into account the following elements:

-

the existence in domestic law and practice of a regulatory framework compatible with the requirements of Article 2;

-

whether account had been taken of the applicant’s previously expressed wishes and those of the persons close to him, as well as the opinions of other medical personnel;

-

the possibility to approach the courts in the event of doubts as to the best decision to take in the patient’s interests (Lambert and Others, (Footnote: ¹) § 143).”

Reading the judgment as a whole, the ECtHR was not entirely clear, in my respectful view, as to whether decision-makers should have regard to the wishes of “persons close to” the individual, their evidence as to what the individual’s wishes were or would be, and/or their views as to what is in the individual’s best interests. However at [69] the ECHR did indicate, but did not determine, that in the case of a young child who had never been able to express views or wishes, their parents’ “status” might be afforded greater weight, and at [80] the ECtHR expressly referred to need to take into account the wishes of those close to the individual concerned.

Pippa and Ms Parfitt each have Article 8 rights to family life, interference with which can only be justified if in accordance with the law and necessary in a democratic society for, amongst other things, the protection of the rights and freedoms of others.

The burden of proof is on the Applicant who seeks the declarations set out above, the standard of proof being the civil standard, on the balance of probabilities.

In cases where the individual concerned is in a permanent or persistent vegetative state, there are two strands of authority as to whether the court is able to, and should, engage in any balancing exercise of benefits and burdens when considering best interests. In

The position that for a patient in a PVS, the futility of the treatment justifies its termination, and there is in reality “no weighing operation to be performed”, was adopted by Hayden J in M v N [2015] EWCOP 76:

“45.

It is well established that if I conclude Mrs. N to be in MCS any evaluation of her best interests must involve a proper identification of the advantages and disadvantages of each proposed course. This approach is conveniently referred to as the ‘balance sheet’, a test articulated, in this context, by Thorpe LJ in Re A (Male Sterilisation) [2000] 1 FLR 549. …

47.

By contrast, if I conclude that Mrs. N had no awareness at all, i.e. that she was in VS, the ‘balance sheet’ analysis does not apply, the diagnosis itself establishing the futility of further intervention. Definitive authority for this proposition is found in the judgment of Sir Mark Potter, in: A Hospital v SW [2007] Med LR 273 at [28]:

“Whereas in most cases relating to the propriety or desirability of treatment for mentally incapacitated patients, it is requisite to draw up a balance sheet of the benefits and dis-benefits of providing medical treatment...it was made clear in the Airedale case that there is effectively no balancing operation to be performed where a person has a definite diagnosis of PVS, the futility of the treatment justifying its termination”.

49.

Were I to agree with Professor Wade that VS is the correct diagnosis here it would require me to endorse an opinion which steps outside the recently drafted and widely respected guidelines. …. I am bound to say, that for my part, where some level of awareness remains, however limited it may be, I instinctively consider that in such cases (whatever the label given to the condition) a decision to withdraw treatment should only be made after a full analysis of P’s best interests. If I had accepted Professor Wade’s conclusion it would have followed, inevitably, that no such analysis was required. It is, as I have stated, axiomatic that if P is in a vegetative state, treatment is futile.”

An alternative strand of authority recognises that even for a patient in a PVS, for whom treatment is medically “futile” there are some considerations to be weighed in the balance when considering best interests. Lord Goff himself referred in Bland to the invasiveness of treatment, and the indignity caused to a patient. In the same case, in the

Lord Browne-Wilkinson in Bland advised some caution in weighing what he called “impalpable factors”:

“The position therefore, in my view, is that if the judges seek to develop new law to regulate the new circumstances, the law so laid down will of necessity reflect judges' views on the underlying ethical questions, questions on which there is a legitimate division of opinion. By way of example, although the Court of Appeal in this case, in reaching the conclusion that the withdrawal of food and Anthony Bland's subsequent death would be for his benefit, attach importance to impalpable factors such as personal dignity and the way Anthony Bland would wish to be remembered but do not take into account spiritual values which, for example, a member of the Roman Catholic church would regard as relevant in assessing such benefit. Where a case raises wholly new moral and social issues, in my judgment it is not for the judges to seek to develop new, all embracing, principles of law in a way which reflects the individual judges' moral stance when society as a whole is substantially divided on the relevant moral issues. Moreover, it is not legitimate for a judge in reaching a view as to what is for the benefit of the one individual whose life is in issue to take into account the wider practical issues as to allocation of limited financial resources or the impact on third parties of altering the time at which death occurs.”[879H].

Notwithstanding this warning, judges have drawn “impalpable factors” into the balance. Raqeeb v Barts NHS Foundation Trust [2019] EWHC 2531 (Admin), a case to which I shall return later in this judgment, concerned a five year old girl who was unable to feel pleasure or pain, but who had some minimal awareness. MacDonald J held that factors such as human dignity and the benefits of being cared for by a loving family as opposed to by hospital personnel in an intensive care unit, ought to be weighed in the balance even for a child with very limited conscious awareness.

The Royal College of Physicians published National Clinical Guidelines: “Prolonged disorders of consciousness following sudden onset brain injury”,the report of a working party, in 2020. The patient group comprised individuals aged 16 or over. Nevertheless, given that these guidelines are endorsed by a wide range of bodies including the Faculty of Intensive Medicine, it is helpful to have regard to them, and in particular the definitions used:

“Vegetative state: a state of wakefulness without awareness in which there is preserved capacity for spontaneous or stimulusinduced arousal, evidenced by sleep–wake cycles and a range of reflexive and spontaneous behaviours. VS is characterised by complete absence of behavioural evidence for self or environmental awareness.

Minimally Conscious State: a condition of severely altered consciousness in which minimal but clearly discernible behavioural evidence of self or environmental awareness is demonstrated’. MCS is characterised by inconsistent, but reproducible, responses above the level of spontaneous or reflexive behaviour, which indicate some degree of interaction with their surroundings.”

VS or MCS can be continuing, chronic or permanent. A permanent VS, or MCS can only be diagnosed by a suitably qualified consultant physician who meets the criteria for an ‘Expert PDOC Physician’ and “after the patient has been in chronic VS or MCS for at least 6 months in the absence of any measurable trajectory of change.”

The Royal College of Paediatrics and Child Healthcare published the document, “Withholding and Withdrawing Life Saving Treatment in Children” in 1997. In 2015 revised guidance was published under the title, “Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice.” (Footnote: ²) The authors issue a caution as follows:

“We emphasise two important points so as to avoid confusion:

1.

This document sets out circumstances under which withholding or withdrawing life sustaining treatment might be ethically permissible—NOT circumstances under which such treatment must certainly be withheld or withdrawn.

2.

The document describes situations in which individual children should be spared inappropriate invasive procedures— NOT types of children to whom appropriate procedures should be denied.”

The guidance then sets out three sets of circumstances in which the RCPCH advises that treatment limitation can be considered “because it is no longer in the child’s best interests to continue, because treatments cannot provide overall benefit”. They are:

“I When life is limited in quantity

If treatment is unable or unlikely to prolong life significantly it may not be in the child’s best interests to provide it. These comprise:

A.

Brain stem death, as determined by agreed professional criteria appropriately applied

B.

Imminent death, where physiological deterioration is occurring irrespective of treatment

C.

Inevitable death, where death is not immediately imminent but will follow and where prolongation of life by LST confers no overall benefit.

II

When life is limited in quality

This includes situations where treatment may be able to prolong life significantly but will not alleviate the burdens associated with illness or treatment itself. These comprise:

A.

Burdens of treatments, where the treatments themselves produce sufficient pain and suffering so as to outweigh any potential or actual benefits

B.

Burdens of the child’s underlying condition. Here the severity and impact of the child’s underlying condition is in itself sufficient to produce such pain and distress as to overcome any potential or actual benefits in sustaining life

C.

Lack of ability to benefit; the severity of the child’s condition is such that it is difficult or impossible for them to derive benefit from continued life.

III

Informed competent refusal of treatment

Adults, who have the capacity to make their own decisions, have the right to refuse LST and to have that refusal respected. So an older child with extensive experience of illness may repeatedly and competently consent to the withdrawal or withholding of LST. In these circumstances and where the child is supported by his or her parents and by the clinical team there is no ethical obligation to provide LST.”

Although the terminology used is of “permanent” vegetative state, the witnesses in the present case have used the term “persistent” vegetative state. For the sake of consistency, I shall use “PVS” to refer to persistent vegetative state.

Pippa’s condition has been assessed at the Evelina over the nearly two years she has been a patient within its PICU. Longitudinal multi-disciplinary assessments have been performed to determine whether she is showing any signs of change. Numerous meetings have been held with Ms Parfitt, and with other family members to consider Pippa’s condition. In 2019 the Trust made referrals for second opinions from a paediatric neurologist and paediatric intensivist at the Addenbrooke’s Hospital in Cambridge. I have seen those opinions which largely accord with the expert opinions given to the court on behalf of the parties. All those experienced and highly qualified medical witnesses agree that, in summary:

Dr G, Consultant neuroradiologist at the Trust says that MRI scanning in March 2019 reveals,

“considerable brain tissue volume loss and shrinkage with mature (chronic) damage, chronic haemorrhagic damage and gliosis in the thalamus, basal ganglia and brainstem, including the widening of the cerebrospinal fluid (CSF) spaces around the brain.”

EEG Telemetry has been performed, most recently over a 20 hour period at the end of September 2020. It revealed a wake-sleep pattern, but no evidence of any reactivity on visual, auditory, or painful stimulation.

Dr B and Dr Spinty agree the following evidence:

“There are widespread destructive lesions of the brain including the brain stem, thalami and basal ganglia structures. These brain structures have a vital role in coordinating all neurological functions. There is also evidence of injury to the cortex. The injury has resulted in prolonged disorder of consciousness consistent with persistent vegetative state as defined in the RCP guidelines. She is totally dependent on the ventilator due to lack of respiratory drive and very abnormal brainstem function. We both agree that Pippa’s neurological function is very severely impaired.

…. Pippa has lost some vital parts of brain stem function due to the acquired injury. This is evident on clinical examination including the longitudinal multidisciplinary team assessments and on serial MRI brain scans. The acquired injuries have resulted in the need for lifelong ventilation and respiratory support. She will remain totally dependent on carers for the rest of her life. She has a four limb motor disorder and has lost multiple cranial nerve functions. We both agree that the brainstem functions will not recover.”

They agree that,

“Persistent vegetative state (PVS) is the correct description of Pippa’s prolonged disorder of consciousness. She is not in a coma and we have no discernible behavioural evidence of self or environmental awareness to suggest that Pippa is in a minimally conscious state.

… there are no viable treatments that would result in an improvement of her neurological status.

… We agreed that long term ventilation will not change Pippa’s neurological condition or long term prognosis. We agreed that there is no hope for a significant neurological recovery.”

“…. it is impossible to know at present whether Pippa is experiencing pleasure, discomfort, or pain. We have considered all the longitudinal investigations and reports including the latest from September 2020. We both agree that on the balance of probability, Pippa does not suffer discomfort, pain, or pleasure, but we are unable to exclude the possibility that she might experience discomfort, pain, or pleasure at some level.

... We both agree that Pippa’s life is limited in quality with a severity of condition that is such that it is difficult or impossible for her to derive benefit from continued ventilatory support.

Dr A and Dr Playfor also agree on a great deal. They agree that:

Dr Playfor told the court that although he agreed that the possibility that Pippa could experience pain or pleasure could not be excluded, he would be very surprised if she had such capacity. He said in oral evidence that it was “difficult to think of circumstances where you could have more confidence that she cannot perceive pain or discomfort – it is highly unlikely.” It was also “extremely unlikely that she experiences any pleasure from interaction with those around her and her environment”.

In their four-way joint statement, Ms D, Ms E, Ms Stevenson, and Mr Chakraborty recorded that they had made contact with Helen Gill-Thwaite and Karen Elliott, developers of the Sensory Modality Assessment and Rehabilitation Technique (“SMART”) assessment of patients with prolonged disorders of consciousness. They responded that they could not offer an assessment of Pippa because they did not have specialism in paediatrics and,

“as you are aware SMART is currently not validated with children. Whilst we have developed SMART version 3 to accommodate the needs of children with specialist guidance from the Children’s Brain Injury Trust, Tadworth, it is not yet validated for this group. We have however, used this assessment in some medico legal cases, but only because the children have been older than 6 years old at the date of the index incident.”

Contact was then made with Helle Mills at Tadworth who is the most experienced SMART assessor at Tadworth having been accredited for 10 years, and who uses SMART to assess children. She responded:

“I do unfortunately not feel a SMART assessment would be appropriate due to the child's young age at time of index incident (even when considering the latest incident at 3.9 years old) and therefore lack of development and ability to engage in the assessment at pre injury stage… I am concerned the child will not have the pre injury skills to engage in the assessment even if there is awareness.”

Whilst much of the focus of the oral evidence has been on Pippa’s respiratory condition, these witnesses provide evidence in relation to some of Pippa’s other long term therapeutic needs:

“Maintenance of range of movement and provision of equipment to offer variety in seating and positioning is possible in the home setting, providing that there is availability of equipment and sufficient trained carers to carry out safe transfers and position changes. Pippa currently requires three trained carers for all transfers (two for hoisting and one to maintain her airway).

Children with special needs, in the community routinely stand in standing frames at home or special school on a daily basis. This would be possible for Pippa to achieve but would necessitate three trained carers to hoist and move Pippa onto a tilt table or standing frame whilst maintaining her airway and then at least two trained carers to stay with her for the duration of the stand to maintain her airway and head alignment.”

Pippa has no respiratory drive – she cannot breathe for herself at all. She has been ventilated on the PICU since admission in January 2019. Unusually she remains ventilated via an endotracheal tube (“ETT”) rather than a tracheostomy tube. A tracheostomy was offered in February 2019, which was standard practice given that neurological improvement was then anticipated and there would be a likelihood of long term ventilation. Ms Parfitt declined a tracheostomy on behalf of her daughter and now says that she did not fully understand why it was being offered. By May 2019 the paediatric neurologist from Cambridge, who was contacted for a second opinion, was advising that a tracheostomy was not in Pippa’s best interests, but he would not have anticipated that Pippa would have remained ventilated on the PICU as long as she has been. Pippa is attached to a standard ventilator and her respiratory support is described as modest with baseline settings at peak inspiratory pressure (PIP) 17, positive endexpiratory pressure (PEEP) 5, and SiO₂ 30%. However, those baseline settings are adjusted several times a day according to her physiological need. Dr C explained that the particular challenges with Pippa’s respiratory condition are not related to ventilation in itself, but to her tendency to desaturate, that is, for her oxygen saturation to fall. In the PICU, the target is oxygen saturation of at least 92%. About 10 to 20 times per day, on average, Pippa’s saturations fall to between 80% and 90%. With careful monitoring those changes are noted and acted upon. The reason Pippa desaturates is that she has poor oxygen reserve and a tendency for her lungs to collapse (“atelectasis”), and that secretions and saliva accumulate in her airway. Secretions are produced by cells in the lung tissue, saliva is produced in the mouth. She cannot swallow, she has no gag reflex, she cannot cough, and she has little movement. These factors combine to allow both secretions and saliva to collect in Pippa’s airway, causing blockages. Because she has poor reserve, the blockages quickly cause decline in her oxygenation.

Dr C and Ms F both told me of the regime used to counter the blockages and desaturations. Regular respiratory physiotherapy is required. Pippa is frequently moved from her back to her side and vice versa. She is also moved into a special “bee” chair on a daily basis. For at least two hours a day Pippa is turned into a prone position, a manoeuvre which takes two, sometimes three, individuals to complete. I was told that Ms Parfitt assists and has become particularly expert at helping to move Pippa onto her front. The object of “proning” is to remove pressure on the back of her lungs so that her alveoli, the tiny pleural sacs, can take up oxygen and so build up her reserve. A cough assist machine, called a Clearway, is used two to three times a day, and sometimes a fourth time if needed. This machine administers saline under pressure and then reverses the flow, simulating a cough, so as to encourage secretions to move up the airway from where they can be suctioned. In addition, a risky process called saline lavage is undertaken by a suitably qualified respiratory physiotherapist. This involves instilling large amounts of saline into the lungs, giving large breaths with the oxygen bag, turning the patient, and using manual techniques alongside the bag breaths and suction to clear secretions. Mouth suctioning is also performed throughout the day and night.

Even with these interventions, Pippa desaturates every 1 to 4 hours. Generally, these episodes are addressed by deep suctioning (the suction tube goes to just above her vocal cords), adjustments to the ventilator pressures, and the use of anaesthetic bagging. Unlike with an Ambu bag, which can use air, or oxygen entrained from a connected cylinder or oxygen concentrator, anaesthetic bagging introduces oxygen into the patient under pressure in order to recruit the lungs. The specialist PICU nurses act swiftly to avoid further desaturation when these episodes occur because Pippa has a noted tendency to desaturate rapidly. Even so, notwithstanding the exceptional nursing care on the PICU, on an average of about once a week Pippa has a more significant loss of oxygen when her level drops significantly below 80%. It has been known to fall to as low as 40% as happened on one day during the hearing. In such cases a respiratory physiotherapist may have to be summoned urgently to add to the efforts to bring Pippa’s oxygen levels back to an acceptable range. Again, specialist equipment such as the anaesthetic bag will be used.

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.

The notion that it might be possible to transfer Pippa home on long term ventilation first came from Dr Wallis. His proposal is supported, in general terms, by Dr Chatwin and Dr Playfor. This combination of expert voices, fully supported by Pippa’s mother, introduces an important consideration for the court – is it in Pippa’s best interests to embark on a process that might lead to her receiving long term ventilation and other life sustaining treatment at home? In order to answer that question, it is necessary to consider what the process of transition to home care would involve, and the prospects of that process succeeding.

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.

Dr Wallis introduced the concept of a trial of home ventilation in his report of April 2020:

“62.

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.

63.

Although she is at the outer limits of possibility, living at home might be possible if shown that:

a)

A tracheostomy (possibly cuffed) provides a portal for ventilation, and airway clearance and bagging that is superior or equivalent to her current ETT;

b)

Her ventilatory needs can be provided by a home ventilator with the minimal of daily adjustments;

c)

Carers can achieve airway clearance and re-recruitment of lung if atelectasis occurs in the absence of regular physiotherapy input but with training in Pippa’s care and physiotherapy needs; d) The family proceed with the discharge process aware that Pippa’s high level of needs deems her vulnerable to complications that may lead to her death in the home environment despite her carers’ best efforts.

64.

It would be my suggestion that a tracheostomy should now be inserted and a package of care be trialled initially in the intensive care setting and, if successful, transferred to a stepdown facility to determine whether home ventilation with current needs is feasible. It has to be recognised that there is an inherent risk to going home for Pippa but if the alternative is withdrawal of life-support, then this risk will have to be accepted by her therapeutic staff as well as mother. There is little to lose by exploring this option and is of no harm to the child.”

Very helpfully, Dr Wallis has presented a flowchart demonstrating the steps towards home care. It is appended to this judgment at Appendix 1.

Dr Wallis has considerable experience at Great Ormond Street Hospital of transferring children from intensive care to a home setting. The same is true for the team at the Evelina. The Trust’s witnesses responded with a number of concerns about this proposal but, whilst maintaining that the trial was not in Pippa’s best interests, they produced a draft trial protocol which, in turn, received some criticism from Dr Wallis and Dr Playfor for being set up for failure. The thresholds for abandoning the trial were set too low in their opinion. In her oral evidence Dr A from the Evelina said she would be open to reviewing the protocol, the proposed ventilator settings, and the thresholds for abandoning the trial. Accordingly, the terms under which a trial would be carried out were explored in detail at the hearing. It is unnecessary for me to chart the course that this evidence took, but I shall set out what was established by the close of the evidence:

Dr Wallis told me that the whole process of trial and transition would be likely to take at least six months. He said that overall there was a 1 in 4 chance of Pippa reaching the point of being discharged home with a full complex care package. However, if the initial trial were successful, he thought that there would then be about a 90% chance that Pippa would progress from the transition unit to home. As he told me, arrival at home is not the ultimate destination, it is the beginning of the next stage of her care. It would not be intended to discharge her home for palliative care, but to continue long term ventilation with a view to keeping her alive as long as possible. If, during the transition process, it became evident that home care was not achievable then the difficult discussion about withdrawal of ventilation would begin.

The treating team at the Applicant Trust does not believe that Pippa’s condition warrants any attempt to transition her to home care. This is a process familiar to the team - the Trust has undertaken it with many other paediatric patients. Dr C told me that she is line manager for fifty patients who are ventilated in the community. Drs A and C and Ms F were perplexed at the suggestion that Pippa was at all suitable for home care. They have been looking after her for nearly two years in the PICU and with exceptional skill and high specification equipment have managed to keep her alive. Frankly, they believe there is no realistic chance that with less sophisticated equipment, and less specialist personnel, Pippa could survive more than a very short time at home. The treating team have stated that they would not be willing to perform a tracheostomy on Pippa for the purpose of the process Dr Wallis proposed and the Applicant seeks a declaration that it is not in Pippa’s best interests to undergo a tracheostomy. It is not that the Trust is opposed to the use of tracheostomies for children on long term ventilation – nearly all such children in the Evelina PICU have undergone tracheostomies, and one was offered for Pippa in early 2019. Rather, their resistance to taking any steps towards a transfer home, in particular an invasive procedure such as a tracheostomy, is based on their belief that the exercise would be futile, and that the continuation of long term ventilation in any setting is contrary to Pippa’s best interests.

The Trust’s view is that Pippa’s condition is such that she could not safely be cared for outside a PICU. The main reasons for that conviction are:

All agreed that Pippa’s life expectancy would be shorter if cared for at home than if she continued to receive long term ventilation and life sustaining treatment in the PICU. All agreed that there would be a risk of an unpredictable complication, such as a profound desaturation, which could prove fatal because of the limited resources available at home as compared with those in the PICU. Dr Playfor and Dr Wallis emphasised that there are “ceilings of treatment” at home, and that families of children on ventilation at home, and the professional nursing team, have to accept the limits of provision and the consequent risks,. They have to be prepared for what to do as and when those risks materialise. As already noted, Dr Playfor considered that Pippa’s life expectancy at home would be “some months” only.

Amongst the new evidence introduced by Dr Wallis at the hearing, were the following:

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. In his first report Dr Wallis wrote at para. 54:

“It is my opinion that Pippa’s clinical condition is at the absolute outer limits of what might be achievable at home. It is rare that a child with complete absence of ventilatory drive, failure to cope with secretions, absent cough and susceptibility to aspiration and atelectasis has, in the absence of consciousness, been put forward for home care. In one instance in which I am aware that this was provided, it was with the understanding that the child would have a limited life quantity and that palliative care provided at home with LTV support package was in the family’s best interests. Pippa would require 2 trained carers at all time who have demonstrated the ability to cope with her respiratory needs.”

In oral evidence Dr Wallis confirmed that that child, unlike Pippa, had some awareness of their environment. Dr Wallis knew of only two children with similar neurological conditions to Pippa’s who had been transferred to home care, but they did not have the same severe respiratory problems that she has. When pressed during his oral evidence, Dr Wallis assessed the prospects of a successful trial of portable ventilation as being between 30% to 40%, and the overall chance that the trial and transition process would succeed in allowing Pippa to receive long term ventilation at home as being about 25%.

Dr Chatwin also thought it less than probable that Pippa would be able to transition to home care. Dr Playfor said that that there was a greater than 50% chance of portable ventilation being viable but did not express a view as to the overall chances of a transition to home care being completed. The weight of these experts’ opinion evidence was that it is possible but unlikely that Pippa’s management could be negotiated through transition to home care. These experts did however acknowledge that their evidence was based on the notes, their experience of other patients, and relatively brief interactions with Pippa herself, whereas the Trust’s witnesses had much more extensive experience of treating Pippa. Ms F for example told me that she had had direct dealings with Pippa on some 75 occasions. She has considerable hands-on experience of managing her desaturations. The Trust’s clinicians are adamant that there is no realistic chance of Pippa transitioning to home care. 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 process was based on wishful thinking rather than the reality of Pippa’s unstable respiratory condition.

I take into account the fact that the Second Respondent’s expert witnesses might be able to form a more independent overview than those clinicians responsible for Pippa’s ongoing care who were particularly anxious to keep up the very high standards of care they have offered to Pippa to date. Nevertheless, in my judgment Dr Wallis’ assessment of a 25% chance of Pippa being successfully transferred to long term ventilation at home is too optimistic. It cannot easily be reconciled with his initial view that Pippa’s condition was at the “absolute outer limits” of what can be managed at home. It is agreed that care of Pippa at the Evelina has been exceptional. 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. It is more likely than not that the failure of the process would be known at an early stage, perhaps even within the first two weeks, but just as it cannot be known with certainty that the process would fail, it cannot be known in advance when any failure would occur.

No-one is closer to Pippa than her mother. She knows what Pippa was like as a child before ANE struck, and she has stayed beside her daughter throughout her time on the PICU. Parental views do not determine what is in a child’s best interests, otherwise there would be no role for the court in a case such as this, but they have significant value, as I shall consider more fully when conducting my assessment of Pippa’s best interests. Albeit with some hesitation, given that I have no statements or other evidence from other members of Pippa’s family, I proceed on the basis that Ms Parfitt speaks not only for herself but for the family as a whole.

Ms Parfitt’s view, clearly expressed in her oral evidence, is that it is in Pippa’s best interests to continue to receive life sustaining treatment because:

These views require some scrutiny. I accept without hesitation that the preservation of Pippa’s life should be given considerable weight. As to Pippa’s progress and level of functioning, Ms Parfitt says that Pippa has improved since January 2019, even after surviving the initial crisis. She says that Pippa was initially very static but began to move her fingers and then her whole limbs. In her second statement dated 3 November 2020, she says,

“I believe Pippa has made good physical and cognitive progress in the 21 months since her initial arrival at the Evelina at a slow pace and continues to improve day by day. I believe my daughter has retained sufficient cognitive functioning that there is a base to build some form of cognitive recovery. 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.”

On visiting Pippa in the PICU, I noticed that she was wearing her own, bright clothes and that her hair had been plaited. Her eyes were open and she moved her left arm up and down. She was surrounded by her soft toys. She has no dysmorphic features and normal head circumference. The Professor of Paediatric Neurology from Addenbrooke’s Hospital who was asked to give a second opinion in May 2019, advised that Pippa had suffered such severe brain damage that future treatment would be “considered futile”, but “looking at Pippa I can entirely understand why any parent would find that hard to understand as she looks so normal in so many ways.”

Ms Parfitt’s view is that Pippa will make further recovery if she is cared for at home, but none of the medical witnesses believe it likely that Pippa will make any form of recovery. Ms Parfitt’s view is that at home Pippa would benefit from her mother’s care such as being fed, but the undisputed medical evidence is that if Pippa were to go home she would require a gastrostomy to allow her to be tube fed. I have viewed twelve videos of Pippa submitted by Ms Parfitt. One has been given the title, “Pippa looking around the room”, but the agreed neurological evidence is that Pippa has cortical blindness – her eyes roll but she cannot see. The videos show Pippa as I found her on my visit. The overwhelming weight of expert evidence is that Pippa has no awareness of her environment, that she has not regained any neurological function since January 2019, and that she will not do so in the future. Ms Parfitt’s views on Pippa’s best interests are based on her faith and determination that by committing herself to her care, she can help her daughter to enjoy some recovery. That is at odds with all the other evidence in this case, including the expert evidence on which she relies.

As to the general prospect of medical advances being made that would advantage Pippa in the future, it is clear to me that 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. That would clearly be the case where the child was suffering pain or discomfort due to ongoing treatment, but it is no less so in a case where the child does not experience pain.

The final benefit claimed for the provision of life-sustaining treatment at home, is that Pippa’s welfare would be advanced by her being within the bosom of her family and in her own home. Even if Pippa had significantly less brain damage than she does, she might well not be able to remember her home, where she has not been for the last two years of her short life. As it is, her brain injury is much too severe to expect her even to be aware that she is in her family home. However, the key benefit being relied upon is not the house itself, but that Pippa would be living with her family. Pippa’s brother would return home and so she would be living under the same roof as him as well as with her mother and, I was told, the family dog. Other members of the family would be able to come and go from the home, rather than visiting Pippa in hospital.

The Trust relies on evidence from the clinicians who lead Pippa’s treating team. The second respondent cannot do that and she has instructed independent experts. Expert medical evidence is permitted when it is necessary to help the court to determine the issues in a case. The medical expertise of Dr Playfor, Dr Wallis, Dr Chatwin, and others is of great assistance to this court, and their evidence on medical matters carries considerable weight, as does the evidence of the Trust’s clinicians, all of whom also have considerable experience in treating extremely unwell children. It is well established that the court should take account of the views of a child’s treating clinicians when assessing best interests, but how should the court treat the views of those clinicians, and of the independent medical experts, on the non-medical aspects of a child’s best interests? Dr Playfor and Dr Wallis in particular expressed views on Pippa’s best interests that went well beyond medical matters. Their views are relied upon by the Second Respondent and I address them in detail later in this judgment. In my view their opinions, and those of the treating clinicians on all matters touching on Pippa’s best interests, are welcome because their experience in caring for very ill children gives them considerable insight into how children deal with adversity, how even very disabled children interact with their families, and what a child is like when at the very edge of life. In addition to their experience of such children generally, Pippa’s treating clinicians have specific knowledge of Pippa, and have seen her with her mother and other members of her family. The views of all the medical witnesses on the non-medical aspects of best interests carry less weight than their views on medical matters, but I do take them into account.

Dr A and Dr Playfor agree that continued ventilatory support in the PICU is not in Pippa’s best interests. This was also the view of the independent intensivist from Cambridge from whom the Applicant Trust obtained a second opinion in September

Dr B and Dr Spinty, the two expert paediatric neurologists from whom I have received written evidence agree that it is not in Pippa’s best interests to continue with lifesustaining treatment and that it is in her best interests to withdraw such treatment. That was also the view of the consultant paediatric neurologist at Addenbrooke’s Hospital, Cambridge, who was asked to give a second opinion by the Trust in May 2019.

Dr C shares the view of the intensivists at the Trust that continued ventilation is not in

When asked at court, Dr Chatwin was reluctant to give her view on Pippa’s best interests but supported the idea of a trial of portable ventilation. Ms F regarded the question of Pippa’s best interests as outside the scope of her expertise. The physiotherapy and occupational therapy witnesses also chose not to express views on Pippa’s best interests.

Notwithstanding their differing views as to Pippa’s best interests, there was clearly considerable mutual respect amongst the medical professionals, and I understood them all to accept that each other’s views on the question of best interests were within a reasonable range of opinion, albeit it appeared to me that some of Pippa’s treating clinicians said so with significant reservation.

Pippa was 20 months old when she suffered the first episode of ANE. This left her significantly disabled and with cognitive impairment, but she was able to undergo rehabilitation and to be discharged home into the care of her mother. She remained at home for about eighteen months until ANE struck again, leaving her in a PVS. She was then 3 years, 8 months old. It is not possible to ascertain her current wishes and feelings. She is not “locked in” and she is almost certainly incapable of forming conscious wishes, let alone having any thoughts about her continued treatment. I take into account that before she lost her capacity for conscious awareness, Pippa knew that she had the unconditional love and dedication of her mother, her brother, and the rest of the family. She made progress at home in their care after the first episode of ANE. This showed that she responded positively to being cared for at home.

The evidence of Ms Parfitt does not assist the court in determining what Pippa’s views about continued treatment would have been had they been capable of being ascertained. 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. Nor is it possible to impute to her any particular ethical, religious, or other values and beliefs. I would hesitate to do so for any five year old, let alone in Pippa’s own case.

Ms Doyle is appointed to act on behalf of Pippa. She has produced two reports to the court. In the first, dated 27 October 2020, Ms Doyle supported a trial of portable ventilation taking place but with the significant caveat that she had not yet seen all the medical evidence relating to such a trial. In her second report dated 2 December 2020, having reviewed all the medical and other evidence then available, Ms Doyle concluded:

“It is with great regret that having carefully considered Pippa’s unique needs and individual circumstances I have come to the conclusion that it is not in Pippa’s best interest to undergo the protocolised ventilator approach trial. Also, I cannot see how it accords with her best interest to continue receiving lifesustaining intervention. I recognise that the assessment which I have formed in this report will deeply upset her mother, brother, grandparents, and extended family members and if this is the decision of the court it will be difficult to accept.

Having regard to Pippa’s life experiences and considering Section 1 of the Children Act 1989, The Welfare Checklist, I do not find it in her best interest to receive treatment that is harmful or that is unable to meet her specialist needs. When thinking about the definition of harm, to mean ‘ill treatment or the impairment of health or development’, I find that a care environment outside of the PICU has now been established as unsuitable to care for Pippa’s long standing, serious and lifethreatening illness. Pippa cannot tell us about her experience of life, but it is evident that due to the most severe and debilitating of health conditions her day to day life is characterised by repeated life sustaining intervention and medical care. A final determination is now needed on whether it remains in her best interest for her life to be supported within the PICU.”

On behalf of the Guardian, Mr Davy confirms in his closing submissions that she remains of the view that the court should make the declarations sought by the Applicant Trust.

I accept that there would be differences in the environment in which care were delivered to Pippa if she were transferred home. Attempts are made to personalise Pippa’s environment on the PICU. As I saw on visiting her, she has her own clothes, and duvet. She is surrounded by her own toys, and coloured lights. She has music or videos played to her. Her mother is by the bedside sixteen hours a day and contributes very effectively to her nursing care. Nevertheless, inevitably there is a clinical sterility in the PICU. It is spacious but there are other children and parents in the vicinity. The PICU is a busy place with healthcare professionals constantly coming and going. At home the environment would be more personal, perhaps more peaceful.

It would be wrong, however, to imagine that Pippa’s home would be anything like a normal home if she were returned there on long term ventilation. Much of her home would in effect become a mini-hospital with a large team of specialist nurses working shifts, and therapists visiting on a regular basis. Specialist equipment such as a hoist, tilting table, specialist chair, cough assist machine, ventilator, monitors and a hospital bed would be installed, and all manner of sterilised pieces of clinical paraphernalia stored. Two nurses would be on duty at all times. She would be attached to a ventilator and monitored using electronic equipment and she would continue to require suctioning, proning and other interventions, day and night. She would be fed through a gastrostomy. She would need hygiene care as now. Pippa’s immediate environment would in many ways be similar to that at the PICU and, for her, home life would have many of the same features as life in the PICU.

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.