Royal Courts of Justice
Strand, London, WC2A 2LL
Before :
MR JUSTICE PEEL
Between :
LIVERPOOL CITY COUNCIL | Applicant |
- and - | |
(1) VT (2) ALDER HEY CHILDREN’S NHS FOUNDATION TRUST (3) NT (THROUGH HIS CHILDREN’S GUARDIAN) | Respondents |
Jamil Khan (instructed by Liverpool City Council) for the Applicant
Carmel Proctor (instructed by Bell Lamb and Joynson Solicitors) for the First Respondent
Maria Stanley (instructed by Hill Dickinson LLP) for the Second Respondent
Eva Holland (Solicitor of Cafcass Legal) for the Third Respondent Child
(by his Children’s Guardian)
Hearing date: 27 November 2025
Approved Judgment
This judgment was handed down remotely at 10.30am on 5 December 2025 by circulation to the parties or their representatives by e-mail and by release to the National Archives.
.............................
MR JUSTICE PEEL
This judgment was delivered in private. The judge has given leave for this version of the judgment to be published on condition that (irrespective of what is contained in the judgment) in any published version of the judgment the anonymity of the child and members of their family must be strictly preserved. All persons, including representatives of the media and legal bloggers, must ensure that this condition is strictly complied with. Failure to do so may be a contempt of court.
Mr Justice Peel :
This is an application for declarations under the court’s inherent jurisdiction with regard to end-of-life care/ medical treatment for N, now aged 8. The parties are the local authority (“LA”), N’s mother, the hospital trust (“the Trust”) and N himself through his Guardian. The LA brought the original application dated 7 August 2025. Following the proceedings being stayed on 2 October 2025, the Trust applied to restore proceedings on 18 November 2025 and was substituted as the Applicant on 24 November 2025.
N is of Romanian heritage. Both his parents are Romanian and live there. He was born with complex health needs and since birth has been severely disabled. He has been the subject of care orders since birth. His parents did not wish to care for him, and he was placed with long term foster carers after a full care order was made in February 2018. He has five siblings who were also placed in foster care (but not with N). He last had contact with his mother when he was 2 years old.
N presented at 9 weeks old with a history of stridor (noisy difficult breathing) since birth and failure to thrive, and was noted to be irritable, with back-arching and abnormal muscle tone. N had an operation to remove excess tissue in the upper airway, but this did not resolve the stridor, and he had a tracheostomy. Following admissions to hospital between 2017-2019 he was discharged to foster care on long term ventilation and a care package in December 2019.
Despite his difficulties, N derived enjoyment and quality of life. He was able to be taken out into the community. He attended school. He enjoyed social interactions, including with his siblings. He enjoyed classical music, going in the garden, listening to audio books and watching films.
The devotion and exemplary care offered by his foster carers and his long-term carers shines through in everything I have read. They have enabled N to enjoy his life to the full, within its limitations.
Over time, N’s condition has deteriorated. A best interests meeting took place on 18 July 2025 which recommended a community-based palliative end of life care, with no CPR and no further hospital admissions. On 7 August 2025, the LA made an application for permission to invoke the court’s inherent jurisdiction and for a declaration to authorize it to make a best interests decision in respect of end of life care for N in the absence of parental consent. At the hearing on 12 August 2025, the Trust was joined as a party to the proceedings and sought a declaration authorizing CPR to be withheld. At that time the Trust did not consider it to be in N’s best interests for long term ventilation to be withdrawn. Morgan J made the declaration sought, gave directions for further evidence in the event that it sought declarations as to ceilings of care, and fixed a further hearing on 2 October 2025.
In support of the application, a report dated 30 July 2025 by Dr C, Consultant in Paediatric Palliative Care employed by the Trust, stated that:
In early 2020, genetic tests identified that N had a UFM1 gene homozygous promotor 3bp deletion. This is a genetic mutation associated with an autosomal recessive, severe disorder characterized by atrophy of parts of the brain that control movement, failure of the protective coating around nerves to form properly resulting in problems with brain and nerve function, severe developmental delay, typically without intentional movements and language development, and abnormally small head size. Almost all patients exhibit spasticity, involuntary movement abnormalities, and severe drug-resistant epilepsy. Disease onset is early in infancy and prognosis is poor. Respiratory insufficiency is the cause of death in a significant number of patients, with age of death between 7 months and 7 years.
N had secondary diagnoses which were attributable to the primary diagnosis. They included respiratory failure, recurrent chest infections, scoliosis, epilepsy, visual impairment, gastrointestinal stasis, weak bones and abnormal liver function.
N was coming to the end of his natural life which was being prolonged by ventilation. There was no treatment for N’s underlying condition, and neurological deterioration was inevitable. N was reliant on long term ventilation and PEG gastrostomy feeding.
An accurate prognosis for time of death was not possible but estimated at days/weeks. No curative treatment was available.
The foster carers supported discontinuing of long-term ventilation and opposed further hospital admission and CPR
Dr C provided a second report on 28 August 2025 that N had continued to deteriorate. The overall conclusion of Dr C was that it was still in N’s best interests to be long term ventilated, but that continued ventilation might at some point no longer be in his best interests, as it would only serve to prolong dying and suffering rather than offering a meaningful quality of life.
Dr M, Consultant Paediatric Neurologist, in a report dated 5 September 2025 agreed with Dr C’s assessment, as did the pediatric long-term ventilation team which reported on 31 August 2025.
On 10 September 2025, Dr F, Consultant Respiratory Pediatrician, provided a second opinion report and said that: “N has now reached the point where the burden of treatment is at least equal to, if not outweighing, the benefit of ongoing treatment and I would fully support a decision of withdrawal of ventilation”.
Following receipt of Dr F’s report, a best interests meeting was convened on 29 September 2025. The meeting concluded that it was in N’s best interests for ventilation to continue at that time. No application was at that stage made for a declaration as to withdrawal of care. On 2 October 2025, Morgan J stayed the proceedings with liberty to restore by 31 January 2026, on the basis that if the proceedings were not so restored, they would be dismissed. This order coincided with a brief (about six days) period of stabilization.
At a best interests meeting on 12 November 2025, the consensus amongst the clinicians attending was that N had reached the end of his life and discontinuation of ventilation was recommended. N’s foster carers acknowledged his deterioration and expressed her agreement with the clinical opinion.
By then he was experiencing increased seizures; he required escalating doses of morphine for management of suspected pain; he was largely unresponsive and not waking; he had had an episode of agitation on 10 November 2025 with increased heart and increased respiratory rate; he had multiple infections for which he was prescribed antibiotics. He was no longer tolerating care giving such as showering. He could not leave home and was only able to sit for a couple of hours a day. He was no longer communicating as before via facial expressions and vocalisations. He showed little respiratory effort and altered pupil reactions, and appeared to have very little awareness of the world around him.
Dr C provided a further report dated 12 November 2025 in support of the restored application. She said that over the previous two months N had significantly deteriorated. He relied much more on his ventilator for respiratory support. He had episodes suggestive of autonomic instability, including episodes of bradycardia and tachycardia. In her view, N was demonstrating that he had come to the end of his life, and she recommended that it was no longer in his best interests to be long term ventilated, which would only serve to prolong his dying and suffering. She pointed to the following
He was increasingly unresponsive and only able to interact with his environment in a fleeting way.
He was making no effort to breathe and was demonstrating autonomic disturbance.
His pain was increasing despite optimum symptom management requiring daily review and frequent increases in analgesia to manage his symptom burden.
There was no evidence that increasing his analgesic requirements was contributing to his deteriorating consciousness or poor respiratory drive.
Antibiotics had successfully treated his infections, but this has not made any difference to his overall quality of life.
The evidence was overwhelming that N had reached the end of his natural life.
There was no evidence for any potentially reversible cause for Ns’ overall deterioration.
Continuing long-term ventilation would only serve to prolong N’s dying and suffering
“My recommendation is that a declaration should now be sought to remove long term ventilation and allow for a natural death”.
In an addendum second opinion report dated 12 November 2025, Dr F said that N has deteriorated clinically from the date of her last report. He had decreased awareness of his environment and no longer appeared to experience pleasure. He was almost entirely reliant on his ventilator. If the ventilator was disconnected, he would be unlikely to survive beyond an hour. He had periods of distress that required increasing amounts of medication to ensure that he remained comfortable. He concluded:
“The conclusion from the [best interests] meeting is that it is N’s best interests that he should have his ventilator disconnected at the earliest time agreed between the local clinical teams and the foster parents knowing that this would result in his death. This would be with N being always kept comfortable using medications as per his symptom management plan. This was agreed by all professionals that were present at the meeting held on the 12th of November 2025. I agree with this statement”.
The long-term ventilation team prepared a short report dated 18 November 2025 saying that “ventilation is simply prolonging dying and prolonging suffering rather than offering the chance to continue with an acceptable quality of life”.
The Trust applied on 18 November 2025 for the matter to be restored to court and for declarations of withdrawal of life sustaining treatments.
On 24 November 2025 the matter came before Judd J. N’s mother attended remotely in person and indicated that she opposed withdrawal of the ventilation. Further directions were made with a short timescale to this hearing listed before me on 27 November 2025.
Dr C, in a further updating report dated 25 November 2025, sets out the current position:
N is not tolerating touch, moving or handling despite ongoing pain management. This causes distress evidenced by heart rate, tightly closed eyes, grimaces, dystonia and back-arching. Even comforting actions such as holding his hands lead to distress.
He spends the vast majority of each 24-hour period asleep or awake with eyes closed, not engaging or interacting with the environment around him. He has decreased consciousness levels. Noise, including from the ventilator, causes him distress. He is coming to the end of his life.
Social contacts have now stopped because they are too distressing.
He is making only minimal effort to breathe and is almost completely reliant on the ventilator. Were it not for the ventilator he would be actively dying. His heart rate is either abnormally slow or abnormally high. He is increasingly pale, sweaty and clammy.
He suffers from adverse effects of his medication, such as constipation, and he cannot tolerate any therapies, such as chest physiotherapy, to clear secretions.
He demonstrates irrefutable evidence of increasing, progressive neurological decline. There is no reversible or treatable cause.
The continuation of long-term ventilation is now causing significant suffering without any overall benefit. He has no ability to interact in any pleasurable activities. He has no discernible quality of life. He can now only experience distress associated with underlying conditions and procedures, and cares such as suction and tracheostomy changes.
Any attempt to move him from home (for example to hospital) would not benefit him in any way whatsoever and would inevitably increase his distress.
The Guardian spoke to Dr J from the Palliative Care Team who was on duty on 25 November 2025. In Dr J’s view, interrupting the natural process of dying is actively doing psychological and physical harm to N. He is unable to communicate distress but is clearly not comfortable.
N’s parents
It took the LA a considerable period to contact N’s parents in Romania. On 20 November 2025 arrangements were made for N’s mother to make a WhatsApp call to N, although he was disengaged with his eyes shut throughout. N’s mother spoke to him at times in a raised voice. In the last couple of minutes, she was shouting down the phone, even though she had been asked to speak calmly and quietly because of N’s reaction to noise. Some of it consisted of N’s mother asking the social worker in front of N about arrangements for flying to England. I understand the anxieties of N’s mother, but having observed a recording of the videocall, I did not have the sense that it was a calm and peaceful occasion.
The position of N’s mother is that she wishes to able to see N one more time before ventilator support is withdrawn. She is in this country, after the LA paid for her to fly here, and nearby where N lives. She refers in her witness statement to the unbreakable bond between herself and N. She acknowledges that N is very ill and at the end of his life. She does not challenge the medical evidence, and does not oppose the application. However, she would like to see him one more time, and tell him that she loves him.
The legal principles
There is no dispute as to the applicable legal principles which are well established. The court must undertake a best interests analysis. I need only refer to paragraph 31 of Re A (A Child) [2016] EWCA Civ 759 where King LJ said this:
“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 591 Baroness 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."
Insofar as there is an issue about whether N’s mother should be able to see him one more time before the life support is withdrawn, I treat this as a deemed application for contact under s34(3) of the Children Act 1989. The legal test (N’s best interests) is the same.
Conclusions
At the start of the hearing, all parties agreed that the declarations sought by the Trust should be granted. I acknowledge how difficult this must have bene for N’s mother. The only remaining issue was how to effect any contact between N and his mother. I decided (i) to grant the declarations sought, (ii) to refuse the application for direct face to face contact and (iii) that one last period of video contact should be attempted (which I was subsequently told, took place successfully). I told the parties my decision orally, and said I would do a written judgment.
This is a deeply sad case. N for several years experienced pleasure and gave joy to those around him. To see him now, so close to death and so obviously in pain, has been distressing to the people who have been closest to him including his foster carers, long term carer, and medical staff, all of whom have given him outstanding, compassionate care.
The evidence is unanimous and clear. In the last few weeks N has declined such that he no longer engages with those around him, or with his environment. He has “shut down”. He is unresponsive and only minimally conscious for most of the time. He no longer experiences any pleasure, or any benefit (of whatever nature) from life. On the contrary, he has been experiencing repeated episodes of severe pain. The treatment which keeps him alive (for example suctioning and the use of tracheostomy) is of itself causing intense suffering. Medication is causing unpleasant side effects. He is unable to communicate his distress. Attempting to move him (for example to clean him) is deeply painful. Ventilation prolongs the suffering. There is no curative treatment available. Unspeakably sad though it is, his natural life is at an end. In my judgment, it is not in his interests to prolong his life, and the attendant suffering, by artificial means (the ventilator) or to continue to attempt to manage his condition. Having weighed up all the evidence in the round, I am satisfied that it is appropriate to grant the declarations sought.
I do not consider it appropriate to enable N’s mother to see him in person before the life support is withdrawn. In practice, that would mean staying my order until such a contact visit takes place. In reality, she is a stranger to him, not having seen him since he was two years old. The remote videocall on 20 November 2025 was difficult for all concerned, and there is nothing to suggest that N derived any benefit. The situation is particularly difficult for the foster carers who have looked after N in such exemplary fashion and want to focus emotionally on coming to terms with his death; they would not welcome the intrusion of N’s mother at their home. Further, a direct meeting at the foster carers’ house would breach the confidentiality of the placement, which the foster carers want to maintain. Finally, I bear in mind that N is, as it seems to me, regularly (and perhaps constantly) experiencing pain, which may be at an agonising level. To delay a merciful, compassionate withdrawal of life support treatment so as to enable a visit to take place would further prolong the suffering of this much-loved boy. I sympathise with N’s mother, but it is not in N’s best interests for such a visit to be arranged. One remote videocall can take place, to be monitored by a social worker.
On his death, N will be moved to a bereavement suite which the parents and other family members may attend to see him. I hope that his final moments can now take place in as calm, stable and pain-free process as possible. I extend my sympathy to all those who are close to N, whether family, friends, carers or clinical staff, and pay tribute to a brave, much loved boy who brought much light and joy to the world around him.