In Birmingham Women’s and Children’s Hospital NHS Foundation Trust v KB & Ors [2024] EWHC 3292 (Fam), Fatima, a ten-year-old Muslim girl, was a patient in the Hospital. She was on a ventilator and could hear but not speak, and she was subject to seizures. Though her condition was life-limiting and of anticipated neurological decline, it was hard to predict what would be likely to cause her death.

The Trust applied for a declaration that it was

“not in her best interests to continue to receive life-sustaining treatment in the form of ventilation (whether invasive or non-invasive) and in her best interests to be extubated and for palliative care and treatment to be provided to her under medical supervision such that she suffers the least distress and retains the greatest dignity until such time as her life will come to an end” [1].

Her parents opposed the application, but her Children’s Guardian supported it [2].

Fatima lived within the faith of her family whilst at home [78]. Morgan J formed the view that “this is a family for whom their faith is a strong thread running through their lives and their thinking”, a key component of which was the sanctity of life. She also formed the view that

“Fatima, though still young, is already, to the extent that she is able to be, a member of that faith by reason of her place in her family. Her Aunt makes the point in her evidence that at ten she would not yet be expected to ‘perform‘ her religion in the same way as others but that for a member of a practising Muslim family ‘that perspective is inborn‘. I agree that all things being equal and absent the disabilities imposed on her by her condition, her religious beliefs as a pre-teenager and young person would more likely than not align with those of her parents and family. Accordingly, I give the question of religious faith strong, though not determinative weight as I consider the application for the declaration sought” [79].

There was a strong imperative to the preservation of life, whether viewed from a religious or from a humanist standpoint. From that flowed the principle that there was a presumption – though not an irrebuttable one – in favour of a course that would prolong her life:

“Linked to the concept of sanctity is that Fatima’s life has inherent value. Her life is one of profound and irreversible disability, but I hold in my mind that a life of disability is of no less value than a life without disability. It could not be clearer from the way in which her family have spoken – to the Court, to the medical professionals and, movingly in the case of her brothers, to the Guardian – of their experience of having her as a daughter, a sister and a niece that her life is one which has inherent value to them. The acuteness with which they feel her absence speaks of what her presence means. Neither the sanctity of her life nor its well-established value is absolute. Each and both are capable of displacement” [80].

The decision as to what was in Fatima’s best interests amounted to a choice between two options:

“withdrawal of life-sustaining treatment with the expectation that the inevitable consequence will be that her life comes to an end … [or] surgery for a tracheostomy with a view to long term ventilation at home (in which long term is quantified variously as an estimate of some months or a small number of years)” [81].

In what was evidently a finely-balanced decision, Morgan J was not satisfied that, in the particular factual circumstances of the case, it was appropriate to grant the declarations sought by the Trust. She dismissed the application [150], though she acknowledged that that in itself was not “without risk or uncertainty and, as her Guardian has been astute to point out, is one that carries with it its own burdens” [151].