FD24P00427 - [2025] EWHC 1988 (Fam)

Mr Wise has emphasised the fact that J’s wishes and feelings, in respect of the plan, have not been formally assessed. It is undoubtedly true that her wishes have not been ascertained definitively. She is non-verbal and, as Dr. Y says, it is difficult to see how, even with the benefit of the pictograms or other support, it would be possible to have a conversation with the degree of subtlety and nuance that her circumstances require. As I understand Mr Wise’s submissions, he contends that the Trust’s application should either be “dismissed”, as he puts it, or “adjourned” in order that a psychologist or some other qualified professional can work with J to facilitate her contribution to the decision-making process. With respect to Mr Wise, even if that were possible, the delay involved and the continuing burden on J would be inimical to her best interests.

It is important to emphasise that whilst J has not been able to articulate her wishes, she does express her feelings. Her response to the treatment is manifest: panic, alarm, terror. Recently, she has disengaged from interacting with questions concerning her health. It was thought inappropriate to try and press her, I agree. J is after all, a teenager, whose silence can also be articulate. Though he cannot be sure, Dr. Y thinks his patient is aware that she is coming to the end of her life. As he reminds us, the care that J has been receiving for her untreatable degenerative disorder has in truth, and of necessity, been palliative for a considerable period, indeed, on a proper construction, throughout the whole of her treatment.

The primary conduit for bringing J into the courtroom has been K, her cousin. He is a nineteen-year-old law student and an extraordinarily impressive young man. Because of her other care commitments, J’s mother is only able to come into the ward once per week. The hospital facilitates video meetings for her on other days. K, who also has a part-time job to support his studies, travels across London, two or three times per week, to spend time with his cousin, J. Both their parents are cousins and K told me that J was more like a sister to him. He did not need to tell me this, it had already become obvious as he gave evidence. He tells me that J sometimes “pretends to be asleep when she is not”, in order to “tease” him. Last month, she celebrated her fifteenth birthday. I do not use the word ‘celebrate’ perfunctorily; I choose it with care. Notwithstanding her fragile situation, K made it a wonderful day for her. She could not partake of the cupcakes he bought for everybody, but he incorporated her into the planning and the organising of the gifts. K and the nurses festooned J’s part of the ward with balloons and bunting. I have no doubt she absorbed something of the happy atmosphere around her. When her health was less compromised, J was, K told me, always very particular about whom she liked and whom she did not. She would have been selective about her guests, and so, K enlisted her in devising the invitation list. Her gifts would always be, as he put it, “very girly”. She was, he said, “a girly girl”. She enjoys the music of Taylor Swift. K laughed, perhaps with some surprise, when I described her as a “Swiftie”. K’s delight in his “sister” is striking, moving and infectious. She is very lucky to have him, and he undoubtedly feels the same. K finds it very difficult to contemplate losing her. He believes that the jaw thrusts are becoming less frequent in consequence of the “subcutaneous infusions”. There is undoubted truth in that, but only because J now spends much of her time asleep in consequence of the sedation.

Mr Wise has argued, extensively, that J must be presumed to be capacitous and/or “Gillick competent”. If he will forgive me for saying so, he has permitted two very different concepts to elide. A child is not autonomous in the same way as an adult is, and though the views of a Gillick competent child will always be weighed into the balance, the approach to adult autonomy is different, particularly, in the sphere of decision-making in serious or life saving medical treatment issues, see: In the matter of X (A Child) (No 2) [2021] EWHC 65 (Fam).

Though there are many references in the medical notes revealing J’s reaction to the chin lifting and jaw thrusts, Mr Wise alighted on a pictogram exercise, in which J had not identified these procedures as one which she “strongly disliked”. Into that category of choice, fell ‘pad change’, ‘repositioning’, ‘dislike of heat’ (Dr. Y told me that the Evelina Hospital is “like a greenhouse”). By contrast, ‘suctioning’, ‘jaw thrusts’, and ‘holding hands’ were allocated to the “ok” category. Some of this is not perhaps what one would have expected. What is striking, however, is that the “strongly like” category clearly reflects those aspects of her life that J enjoys, e.g. having her hair brushed, music therapy and, rather tellingly, the fan! K, who has been present throughout, also considered that in allocating ‘pad change’ to the “strongly disliked” category, J was reflecting an unhappiness generated by her double incontinence, about which, out of respect for her, I will say no more. Again, I am inclined to agree with K. This evidence, which requires to be placed in the broader canvass, reveals a lot about J’s character and personality, but it does not bear the weight Mr Wise seeks to place on it. It cannot be interpreted as an indication that J would choose to live with her progressive neurodegenerative disorder, in which her days are punctuated by ‘terrifying’ airway occlusions, necessitating traumatic interventions.

I agree with Ms Khalique KC, on behalf the Trust, the extent and significance of J’s neurodegeneration is all too apparent. No treatment is available, and nothing can make her better. From this perspective, a decision not to provide the range of treatments (chin lifts, jaw thrusts, airway manoeuvres, replacement of DBS, CPR, intubation, ventilation, any admission to PICU for other than palliative care) cannot be equated with an active decision “not to help”. In this context, in Aintree University Hospitals NHS Foundation Trust v James [2013] EWCA Civ 65 at [22], per Baroness Hale highlighted the following, which, to my mind, encapsulates the issues in this case:

“Hence the focus is on whether it is in the patient's best interests to give the treatment, rather than on 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 that they have acted reasonably and without negligence) the clinical team will not be in breach of any duty towards the patient if they withhold or withdraw it.”

I have come to the clear conclusion that to provide the contemplated treatment to J is incompatible with her best interests. The fact that M and K do not support the broad professional consensus does not mean that I have not given careful thought to all they have said. On the contrary, as I hope this judgment demonstrates, I have listened very carefully to them. I am entirely aware of how disappointed and sad they will be by my conclusions in this judgment. It is important that I indicate that they have both played an invaluable part, with all the clinicians, in maintaining J’s dignity in the face of some terrible challenges. That said, I am clear that the time has come when the treatments that have been discussed do not respect J’s inviolable right to be valued, respected, and treated ethically, solely because she is J. In other words, they would not afford her the dignity that she and her family, including her “extended family” at the hospital, have guarded so vigorously thus far.

Finally, I record that J’s Guardian has also supported the Trust’s application.