FD25P00441 - [2025] EWHC 2100 (Fam)

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.