FD25P00441 - [2025] EWHC 2100 (Fam)

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.