The Trust v Z and Others (Withdrawal of Medical Treatment)

This matter concerns Z, now age 10 months. The Trust seek orders permitting the withdrawal of life sustaining treatment from Z which they no longer consider is in his best interests. That application is supported by his Children’s Guardian, it is opposed by Z’s parents.

Z’s health is seriously compromised due to being born with a severe congenital abnormality in his brain development. This resulted in fluid collection on his brain that required draining. That was achieved by a surgical procedure to insert a ventriculoperitoneal (VP) shunt. Z suffered additional brain injury secondary to recurrent hypoxic ischaemic encephalopathy. He has visual and hearing impairments, severe and uncontrolled dystonia, autonomic dysfunction and non-cortical myoclonus. His failed growth rate (static weight for the last 3 months) is due to borderline short gut and gut failure, with current dependence on total parenteral nutrition (TPN). He has suffered two cardiac arrests.

Z’s parents have been devoted to Z’s care. They have attended hospital every day and supported the medical care in any way they can. The medical team who cares for Z have recognised the high level of care Z’s parents have provided. Equally, Z’s parents have been very grateful for the careful specialist medical care that has been provided for Z by the clinical team.

I heard oral evidence from Dr A, Consultant in Paediatric Intensive Care Medicine at the Trust and Dr B, Consultant in Paediatric Neurology, also at the Trust. Following hearing the evidence and submissions from the parties on 1 August 2025 it was agreed that I would announce my decision that day, which was to make the declarations sought by the Trust. This judgment sets out the reasons for that decision.

Z’s parents are in a position every parent dreads, having to make critical decisions about Z’s continued medical treatment which have such profound consequences for Z. They have been assiduous in their care of Z, alerting the medical team to any concerns being driven by their unconditional love for Z and not wanting to see Z suffer. In their words, Z has defied the odds in what he has managed, including cardiac arrest and surgical procedures. They believe Z has the right to live and they consider it is in his best interests to live the full extent of his life whilst being actively treated for his various medical issues. Z’s parents and the medical team caring for Z have mutual respect for each other’s position, even though they seek different outcomes.

The court is very grateful to the respective legal teams for the sensitive and collaborative way these proceedings and this hearing has been conducted.

Z has severe neurological dysfunction due to the global malformation of his brain that he has had from before birth, from which he will never recover. Since his birth he has had numerous other medical complications, including two hypoxic episodes in which he has suffered further brain injuries.

Following his birth, due to fluid collection on the brain he required a VP shunt to be inserted for his hydrocephalus. This procedure took place nine days after his birth and it has subsequently had to be replaced with a ventriculoatrial (VA) shunt.

Z was discharged home when he was three months old but had to be re-admitted to the Paediatric Critical Care Unit (PCCU) nine days later due to respiratory deterioration which, despite intensive care treatment, led to a cardiac arrest two days later. Z had to be mechanically ventilated for thirteen days.

Z suffered a second respiratory and cardiac arrest when he was six months old and was actively resuscitated for twenty-one minutes. Z needed three intraosseous cannulas and two doses of adrenaline.

When Z was seven months old he was diagnosed with necrotising enterocolitis (NEC). Initially it was treated with antibiotics, but Z deteriorated and two weeks later he was transferred to another specialist hospital where Z underwent a laparotomy during which 35 cm of diseased and perforated, distal ileum was resected, an ileostomy was formed and the VP shunt was exteriorised (and subsequently replaced by a VA shunt) before being transferred back to the Trust’s hospital.

Z remains intubated and ventilated via an endotracheal tube in the PCCU. He requires twenty-four hour support with his breathing and nursing care.

Whilst there have been previous discussions with Z’s parents regarding a trial extubation, no agreement was reached. The medical team now considers such a trial is not in Z’s best interests. This is because if Z is extubated and needs reintubation the clinical team feel it would not be in his best interests to reintubate.

There have also been problems with various tubes and lines that have had to be inserted into Z to provide nutrition and medication. Z has had to have these lines and tubes replaced or re-sited. Due to the difficulties this has sometimes had to be done under general anaesthetic or by interventional radiology. Currently Z has a single-lumen tunnelled line. It was not possible to place a multiple lumen line which means that all of Z’s infusions go through this single lumen. This increases the risk of future line infections and complications. Infections have been managed by antibiotics. It has been difficult to insert new lines and the procedures for doing so can be very invasive for Z. For example, Z previously had a ‘Hickman’ line which was noted to be leaking and non-functional. It was removed and a central venous catheter was inserted. That started to leak and become poorly functional after only a short period and the tunnelled line had to be inserted.

About two weeks ago, Z was diagnosed as having a left common femoral vein thrombosis/clot. Anticoagulation therapy was commenced, which requires regular blood tests. Recently it took ten attempts at blood sampling to get the required sample with Z’s dystonia observed to worsen during this time.

Z continues to exhibit significant dystonia and myoclonic movements, with only relatively brief and unpredictable periods of respite. Despite the medical team’s best efforts it has not been possible to find a combination of medication to effectively manage these symptoms.

Z receives all his nutrition via TPN and intermittently via either a Naso-Jejunal (NJ) or Naso-Gastric (NG) tube, but is still failing to thrive. There remain significant concerns about Z’s gut absorption and a very cautious approach is being taken due to the impact on Z of taking nutrition, however it is administered. Just before the hearing it was stopped via the NJ tube, and even more recently Z was unable to tolerate NG feeds, so that was stopped too. The consequences of this reduced nutrition not only impacts on Z’s ability to grow but also on the ability for any wounds to heal.

Prior to issuing these proceedings on 22 July 2025, the Trust sought second opinions from specialist Consultants from other Trusts. Dr C, Consultant in Paediatric Intensive Care, Dr D, Consultant in Paediatric Neurology and Complex Motor Disorders, Mr E, Consultant Paediatric Surgeon and Dr F, Consultant Paediatric Gastroenterologist. Each of those consultants, save for Mr E, had visited and seen Z, reviewed the relevant records and had detailed discussion with the parents before providing their reports. Each of these second opinions supported the conclusions reached by the Trust.

There have been several discussions with the parents regarding Z’s condition with regular weekly meetings to provide clinical updates which provide the parents with an opportunity to ask questions. Following these discussions with the parents, it became apparent to the Trust that a consensus was not going to be reached and this application was made. Directions were made by Poole J on 23 July 2025 and this hearing listed.

The Children’s Guardian visited Z two days prior to this hearing. She stayed for over an hour observing Z, speaking to the parents and the clinical team and provided a detailed note of the visit.

The written and oral evidence from the two clinical leads for Z, Dr A and Dr B, provided a comprehensive account of Z’s relevant medical history and current position. Dr A considers Z has a poor overall prognosis. As he graphically described the position in his evidence, Z has no prospect of recovery, he is dying and is dying slowly. Their evidence outlined the many complications Z has had to deal with, such as two cardiac arrests, the difficulties with nutrition, securing lines, the recent blood clot and the impact for Z of the medical interventions required to treat each of those complications. Even though it is possible to treat individual complications as they arise, each time Z becomes weaker and more frail only to await the next medical issue that is inevitably going to arise.

Both Dr A and Dr B in their written and oral evidence were clear that the evidence did not support any prospect of improvement in Z’s condition.

Dr A stated in his statement “It is the collective opinion of the PCCU consultant body that the continuation of full intensivecare interventions for [Z] is not in his best interests. He has a severe brain abnormalitythat is not compatible with long term survival beyond intensive care or without recurrentepisodes of intensive care, and any attempts to prolong life through aggressive treatmentwould result in significant suffering without altering the outcome.”

As to Z’s level of consciousness and awareness Dr B set out in his statement

“..there is no sign of activity detectable on EEG. This implies the cortex is not functioning atall and I suspect that the cortex that he did previously have has been injured to an extent thatit is no longer able to support normal neurological functions”

His brainstem function is abnormal....temperature regulation and the gag reflex are impaired

Consciousness is a complex phenomenon...there are significant limitations on the currentscientific understanding of consciousness which is mostly based on.... adults....and it maytherefore be of very limited relevance to very young children especially those with pre-existingneurological abnormalities such as [Z]

[Z] does not display any awareness of the world around him except to respond to unpleasantphysical stimuli with a dystonic reaction and possibly to calm down when his parents massagehim

It has not been possible to exclude some low level awareness....that is being mediated by hisbrainstem and enabling him to respond to physical touch and pain

It is my opinion that the responses we are seeing...are involuntary reflex responses ....withoutconscious awareness

...he does experience pain”

This view is supported by Dr A. Dr B had viewed the videos relied upon by the parents which showed Z being soothed by their massages, of Z making independent movement with his arms and being able to gag. Whilst Dr B did not dispute the content of the videos, they were only very short periods, mostly under a minute, and did not reflect the detailed nursing observation records. Dr B described that when his parents touched Z it would be recognised by the limited function in Z’s brain, but due to the extent of the damage to his brain within a short period Z would then revert to exhibiting dystonic and myoclonic movements. Dr B states that Z is severely disabled and ‘totally unaware of the world around him except for some sensation of touch which is often painful and unpleasant for him’.

The Trust’s clinical team consider that Z’s gut will never recover and Z would require TPN possibly permanently, which carries increasing risks over time from severe infections or liver failure.

Dr D, Consultant Paediatric Neurologist, stated in his report dated 7 July 2025 that ‘the overall severity of [Z’s] brain dysfunction is life limiting. I do not believe there is any realistic prospect of recovery or improvement for [Z] with regards to his neurological function, developmental prognosis or awareness of the world around him. He will remain entirely dependent upon others for all aspects of his daily care throughout his life.’ Continuing later in his report stating, ‘I do not believe that [Z’s] current neurological condition is consistent with a sustained ability to maintain his life, and there is no realistic prospect of improvement or recovery in the future’.

The evidence about Z’s life expectancy is extremely difficult to predict. If Z remains in receipt of treatment, he remains at risk of the many complications that could arise due to his current position, which could result in his death. As Dr A observed ‘the invasive ventilation is only delaying an inevitable death due to the nature of his brain condition’. Dr C stated ‘It is almost certain that he would develop a complication of this ongoing therapy (for example sepsis from central venous access, ventilator acquired pneumonia) were it to continue’. If ventilation is removed, he may be able to breathe on his own but his life expectancy would be limited as he would not be receiving TPN, although would still be receiving hydration. If he was unable to breathe on his own to sustain life he would be expected to pass away relatively quickly. At any point Z could experience an event that could result in his death, for example by an overwhelming infection or an electrolyte imbalance leading to a cardiac arrest. The clinicians have made it clear if the declaration was made ‘The clinicians would continue to be guided by the observations of [Z’s] parents, who have been very good at advocating for [Z] when they feel he is in pain and distressed. At the same time, the clinical team that is looking after him would be able to use their clinical judgement which is based on appearance, heart rate, blood pressure, sweating and posture. These are only some of the observations that may be used’.

In their written statement the parents make it very clear why they consider Z should continue to receive treatment based on Z’s right to live, and, what they consider to be changes they have observed which give them hope that he may recover. As they set out in their statement they want to give him ‘the best chance of survival’.

There is no significant issue between the parties as to the relevant legal principles and each have set out their own version of the relevant principles. The lodestar is what is in the child’s best interests. This must be considered in its widest sense encompassing medical, social, emotional, psychological and all other welfare issues.

The relevant principles are helpfully summarised by MacDonald J in Raqeeb v Barts NHS Foundation Trust [2019] EWHC 2531 (Admin) and [2019] EWHC 2530 (Fam) at §116:

“As regards the application by the court of [the] best interests principle in the context of medical treatment to children who are not ‘Gillick’ competent, this is well settled. The following key principles can be drawn from the authorities, in particular Re J (A Minor) (Wardship: Medical Treatment) [1991] Fam 33, R (Burke) v The General Medical Council [2005] EWCA 1003, An NHS Trust v MB [2006] 2 FLR 319, Wyatt v Portsmouth NHS Trust [2006] 1 FLR 554, Re Ashya King [2014] 2 FLR 855, Kirklees Council v RE and others [2015] 1 FLR 1316 and Yates and Gard v Great Ormond Street Hospital for Children NHS Foundation Trust [2017] EWCA Civ 410:

i)

The paramount consideration is the best interests of the child. The role of the court when exercising its jurisdiction is to take over the parents’ duty to give or withhold consent in the best interests of the child. It is the role and duty of the court to do so and to exercise its own independent and objective judgment. ii) ii) The question for the court is whether, in the best interests of the child patient, a particular decision as to medical treatment should be taken. The term ‘best interests’ is used in its widest sense, to include every kind of consideration capable of bearing on the decision, this will include, but is not limited to, medical, emotional, sensory and instinctive considerations. The test is not a mathematical one, the court must do the best it can to balance all of the conflicting considerations in a particular case with a view to determining where the final balance lies. Within this context the wise words of Hedley J in Portsmouth NHS Trust v Wyatt and Wyatt, Southampton NHS Trust Intervening [2005] 1 FLR 21 should be recalled: “This case evokes some of the fundamental principles that undergird our humanity. They are not to be found in Acts of Parliament or decisions of the courts but in the deep recesses

of the common psyche of humanity whether they be attributed to humanity being created in the image of God or whether it be simply a self-defining ethic of a generally acknowledged humanism.”

iii)

Each case is fact specific and will turn entirely on the facts of the particular case.

iv)

In reaching its decision the court is not bound to follow the clinical assessment of the doctors but must form its own view as to the child's best interests.

v)

The starting point is to consider the matter from the assumed point of view of the patient. The court must ask itself what the patients attitude to treatment is or would be likely to be. Within this context, the views of the child must be considered and be given appropriate weight in light of the child’s age and understanding.

vi)

There is a strong presumption in favour of taking all steps to preserve life because the individual human instinct to survive is strong and must be presumed to be strong in the patient (see Airedale NHS Trust v Bland [1993] ACR 789 at 825). The presumption however is not irrebuttable. It may be outweighed if the pleasures and the quality of life are sufficiently small and the pain and suffering and other burdens are sufficiently great. Within this context, as I noted in Re Y (No 1) [2015] EWHC 1920 (Fam) at [37], the right to life under Art 2 of the ECHR imposes a positive obligation to provide life sustaining treatment, but that that obligation does not extend to providing such treatment if that treatment would be futile in nature and where responsible medical opinion is of the view that the treatment would not be in the best interests of the patient concerned (see R (Burke) v The General Medical Council [2005] EWCA 1003).

vii)

The views and opinions of both the doctors and the parents must be considered. The views of the parents may have particular value in circumstances where they know well their own child. However, the court must also be mindful that the views of the parents may, understandably, be coloured by emotion or sentiment. There is no requirement for the court to evaluate the reasonableness of the parents’ case before it embarks upon deciding what is in the child’s best interests. In this context Waite LJ, in Re T (A Minor)(Wardship: Medical Treatment) [1997] 1 All ER 906 at 916 to 917 stated…

viii)

The court must consider the nature of the medical treatment in question, what it involves and its prospects of success, including the likely outcome for the patient of that treatment.

ix)

Regard must be paid to the rights of the child, in particular her right to life under Art 2 and her right to respect for private and family life under Art 8. Regard must also be paid to the parents’ rights, in particular their right to respect for private and family life under Art 8. In this case, the right of Tafida and her parents to freedom of thought, conscience and religion under Art 9 of the ECHR is also engaged and must be considered.

x)

There will be cases where it is not in the best interests of the child to subject him or her to treatment that will cause increased suffering and produce no commensurate benefit, giving the fullest possible weight to the child’s and mankind’s desire to survive.”

In their submissions the Trust recognises the factors that support a continuation of invasive treatment that include the fact it will prolong Z’s life, there is a strong presumption in preserving life, that Z’s life, no matter how impaired, has an inherent value. He has loving parents who are devoted to him, who he brings joy to and who wish for his life to continue, and for Z to receive further treatment as it would preserve Z’s life. Against that is the evidence that Z’s treatment is futile in the sense that it will not treat his underlying neurological condition, there is no realistic prospect of recovery or even improvement in Z’s condition, as well as his underlying condition Z has a number of morbidities that further complicate his medical presentation and treatment. Z’s treatment to date has involved periods of acute and extensive medical and surgical interventions, associated with pain and suffering and involved hospital admissions for many months. Dr B and Dr D are clear that Z reacts to painful stimuli and treatment. That is supported by Dr A. Z’s treatment can cause ongoing pain and distress. Whilst Z may gain some comfort from the presence of his parents and their actions, the evidence is that is likely to be very short lived and it needs to be balanced by the periods of distress and discomfort experienced by Z. The evidence from the treating day to day clinicians is that Z shows no awareness of the world around him except for pain. The medical professionals’ evidence from both inside and outside the Trust have seen, contributed to and agree the proposed Redirection of Care and Palliative Care Plan (the Plan). There is no alternative treatment option proposed and the Plan is flexible to meet Z’s particular needs. The Trust submit that when Z’s best interests are considered in the widest sense the quality of Z’s life when looked at as a whole, and the burdens of continuing his treatment in his particular circumstances, rebut the strong presumption of taking all steps to preserve life.

On behalf of the parents, Mr Lewis and Ms Nizami set out that the parents consider Z has defied the odds. The parents were informed during the pregnancy that due to brain abnormality and hydrocephalus he may not survive the birth. They have been told a similar outcome as Z has faced treatment for each medical complication since birth, the fact he has survived each step has given them hope. On behalf of the parents they explored in oral evidence with Dr A and Dr B the differences between continuing with treatment and the withdrawal of treatment, focussing on life expectancy, pain and discomfort and mode of death in either scenario. In the written submissions emphasis is placed on the devotion of Z’s parents, their daily visits, the bond they have with Z, their experience of Z’s existence and the intrinsic benefit of Z’s life continuing. They submit the parents recognise the evidence suggests that Z will die whatever the court decides, Z may die sooner if the Trust’s application is granted but it is far from clear and their concern is about whether Z would suffer more if the Trust’s application is granted. Whilst the parents hold religious beliefs their views about Z’s treatment are not informed by those beliefs, they are informed by being Z’s parents and the strong emotional bond they have with him. In their oral submissions Mr Lewis submits the parents say there is an inherent value in Z’s life and him continuing to live, they feel he is slowly progressing and responds to their touch. They consider he is calmer now than he was in April after his cardiac arrest, and they know his life is going to be short, although as Dr C recognised it is difficult to predict life expectancy and some children unexpectantly have a longer life on palliative care than they would in ICU. Mr Lewis submits that the lack of clarity about life expectancy enables the court to give more weight to the parents’ views in the best interest analysis. Both parents have been clear that their deep love and affection makes clear they would not want Z to struggle or suffer, including how he dies.

Ms Kelly, on behalf of Z’s Children’s Guardian, recognises and has carefully considered the importance of the sanctity of life and the parents’ wishes but submits that must be balanced with Z’s quality of life, his overall prognosis with no prospect of recovery or improvement, the evidence of pain and the alleviation of that pain. Ms Kelly submits on an analysis of the benefits and burdens of either continuing treatment or implementing the Plan Z’s best interests are met by granting the application permitting the Trust to withdraw treatment in accordance with the Plan.

The issue before the court is whether it is no longer in Z’s best interests for life-sustaining treatment to continue to be provided and whether it is in his best interests for ceilings of treatment to be imposed on his care.

The legal framework in which this application is to be considered is not in issue. The intense focus of the court must be on Z’s best interests in its widest sense, considering not only the medical evidence but also social and psychological evidence. In this case the matters the court needs to consider include the medical evidence, the parents’ wishes, Z’s particular circumstances, the presumption in favour of taking all steps to preserve life and the EHCR rights that are engaged by Z and his parents.

There is no doubt in this case that Z is a cherished and much loved child. Both his parents have been devoted to his care, they have attended hospital each day and, as has been recognised by the treating clinicians, have been effective and protective voices for Z. They have alerted the clinical team when they have considered he is in pain, discomfort or requires attention.

Whilst the parents and clinical team disagree on the next steps for Z there is a strong and tangible mutual respect between the parents and the clinicians regarding their respective positions. As Dr A movingly said in evidence, they have walked this path together. The Trust in this case could not have done more for Z. They rightly sought extensive second opinions about Z’s condition, prognosis and treatment prior to making any decision to issue proceedings. They have involved the parents at each stage, actively encouraging them to speak with those who attended hospital to see Z in advance of providing any second opinion. Whilst they have come to different conclusions the parents and the Trust have worked in a truly collaborative way that has benefitted Z. They both have the admiration of the court as to how they have done this in such difficult circumstances.

The medical evidence about Z’s current position is clear and not disputed. Very sadly, Z will not recover, his condition will not improve and it is very likely he will continue to deteriorate. As Dr A stated Z is dying, albeit slowly. The treatment he currently receives is invasive, at times painful and is futile in the sense that it will bring about no improvement in his underlying neurological conditions. Z will not recover from gut failure due to congenital gut dysmotility, the impact of NEC and current gut function with the result that it is very unlikely Z will be able to be weaned off TPN for the remainder of his life, with the significant risk of complications for Z of remaining on TPN. Those complications include risk of infection, liver failure and the impact on day to day management.

Dr B described Z is receiving the maximum safe dose of the medications that currently seek to relieve his pain and discomfort. Put simply, there is no more headroom for further medication to alleviate his symptoms. The evidence of Dr B, supported by the second opinion from Dr D, is that Z experiences pain and suffering from the various interventions. Whilst there maybe brief relief from that caused by his parents’ touch, that does not reflect the more extensive clinical observations and the damage to his brain is such that he is not able to make that connection. Each time Z is treated for a complication, he is frailer and therefore more compromised to manage after that, only to wait for the inevitable next complication and treatment.

The parents, very understandably, hope that the position is different but all the evidence, sadly, points the other way. As Dr A said in oral evidence, Z is not going to get better, and as a result the parents’ hope is not aligned with the reality. Dr F stated ‘I understand from the Neurology team that [Z’s] neurological condition is extremely severe and progressive. The EEG showing no cortical activity is particularly concerning, as it indicates a profound and widespread impairment of higher brain function. Combined with worsening dystonia, reduced pain response, and non-cortical myoclonus, this points to irreversible and severe neurological damage that dictates a very poor overall prognosis, regardless of his gastrointestinal status.’ Dr F stated in her report that the parents’ ‘hopes for his recovery to a pre-May condition are understandable, but unfortunately, the medical reality, particularly concerning his irreversible gut failure and profound neurological deterioration, does not support such an outcome.’She concludes her report stating ‘I empathise with [Z’s] parents and admire them for their strength and resolve during all of the events of the last 9 months. This, however, does not change the reality of [Z’s] situation: he is extremely fragile and he is now being kept alive by medical intervention’.

Dr C concluded that Z is a ‘much cherished boy, with parents who have been, and continue to be, wonderful advocates for him over the course of his prolonged illness…[Z] has a life-limiting underlying condition affecting the brain’s ability to develop and grow. He has required two neuro-surgical operations to help control the fluid in his brain (hydrocephalus) with special shunt devices; the second operation was done urgently due to clinical deterioration. On top of this, [Z] has suffered multiple events, which have all been immediately life threatening in nature and have had a negative impact on both his current clinical condition and also the chances of him getting back to a point where he might be able to spend any time outside of an intensive care environment. The two cardiac arrests he suffered have resulted in prolonged periods of time when oxygen delivery to the brain was interrupted, causing further secondary brain injury. He has also had a condition affecting his gut (NEC), that made him extremely sick with sepsis due to some of that gut dying, and required emergency surgery to remove a large portion of the bowel…is currently dependent on nutrition being put straight in his bloodstream. He has been on a machine to help him breathe for a long time. He suffers from increased muscle tone, spasticity, jerking of his limbs and inability to control his movements…These are being treated with high doses of medication…the medications are not successfully controlling the movements…It is difficult to assess how [Z] experiences pain or suffering, but dystonia is widely reported to be painful and unpleasant. [Z] has deteriorated significantly over recent months…’

I have carefully considered and weighed in the balance the importance of the sanctity of life, that Z’s life has an inherent value, the strong presumption in favour of preserving life and that Z would continue to receive the unconditional devotion of his parents who wish for him to continue to receive treatment. The interference in the respective Article 8 rights of the parents and Z, and Z’s Article 2 rights are engaged and significant. It is necessary to consider whether any interference is justified, necessary and proportionate.

Against those important considerations is the undisputed medical evidence that there is no prospect of Z recovering, or even improving. The complications that arise from his congenital brain malformation have each been significant, required complex and invasive medical and surgical interventions that are associated with pain and suffering for Z. After being treated for each complication Z becomes frailer. He reacts to painful stimuli and treatment which can cause ongoing pain and distress to Z. This pattern is very likely to continue and the medication options to alleviate that pain and suffering have now reached their safe limits. There is evidence in the videos relied upon by the parents that for a limited period of time their touch benefits Z but when considered with the wider clinical and neurological evidence that is only for relatively brief periods of time. Overall treatment is futile, in the sense that it will not cure or treat his underlying neurological condition or bring about even minor improvements in his life limiting conditions.

It is with very great sadness that I have reached the conclusion that the application by the Trust should be granted. Whilst I have carefully considered the strong and important considerations in favour of continuing treatment, including their Article 8 rights and Z’s Article 2 rights, the balance comes down clearly that the burdens of continuing that treatment for Z, in his particular circumstances, are contrary to his best interests. His parents are right that he has defied the odds but the evidence demonstrates that save for relatively brief periods he suffers pain and discomfort on a regular basis, due to the many and necessary procedures that have to be undertaken and through his own symptoms. He will not recover, he remains at high risk of further complications which will only further weaken him as a consequence of any treatment. There are no more medication options to manage his condition. In this bleak medical landscape I agree that further treatment is futile. I have carefully considered the evidence about the uncertainty of life expectancy whether Z continues being treated or moves to be cared pursuant to the Plan. Whilst that uncertainty is there, Dr B was clear that the medication options are more flexible under the Plan, which is likely to better manage any future pain and discomfort for Z.

I agree with Dr F and admire the strength and resolve of the parents in doing all they have done to support Z. They have been wholly dedicated to meeting Z’s needs, which I know they will continue do in the very difficult period that lays ahead with the support of the dedicated clinical team.