Children, capacity and accepting the diagnosis

Y NHS Foundation Trust v AN & Anor [2024] EWHC 805 (Fam) concerned a 16 year old girl, AN, who had very recently been diagnosed with acute leukaemia.  After one night in hospital, she had discharged against medical advice but with the support of her parents. At the time, the doctor concerned was satisfied that she had the capacity to take that decision.  Shortly afterwards, the consultant haemotologist visited AN at home to explain to her the urgency in starting treatment, and that why it would usually be done as an inpatient. AN explained that she was not refusing treatment, but needed time to come to terms with her diagnosis. She didn’t believe that she would become unwell over several days at home. The haemotologist considered that she had capacity to understand the diagnosis, and the proposed need for inpatient treatment, and the risks of not having treatment. The haemotologist agreed to give her limited time at home before seeing her again ideally to admit her for treatment two days later.  At that point, AN returned to hospital, where blood tests that she had “an aggressive, rapidly progressive form of blood cancer that untreated would be expected to result in life threatening complication within a matter of days or weeks. With appropriate treatment, however, there is a very high chance of remission, and a good chance of long-term cure” (paragraph 6).  The intention was that AN should be immediately admitted, but after many hours of conversation, AN remained of the view that she did not wanted to be admitted:

The view of the haemotologist was that, whilst AN had no impairment or disturbance in the functioning of her mind or brain, AN “was not accepting of her diagnosis, or of the inevitability that she would become unwell in the absence of urgent treatment. This led her in her statement to conclude that AN ‘does not display sufficient capacity today to make decisions about her treatment/safety‘” (paragraph 8).

In circumstances where it was clear that AN would not remain in hospital to start treatment and that her mother would only accept delaying admission, providing supportive medication and continuing blood tests, the hospital brought an urgent out of hours application.  Cusworth J conducted the proceedings remotely so that he was able to hear from AN’s mother, and saw AN.  As Cusworth J noted:

11. […] As AN is 16, she remains a minor and so would in those circumstances usually be represented through Cafcass as her guardian. I have been referred to the January 2023 guidance provided jointly by Cafcass and the Official Solicitor dealing with out of hours medical cases involving children. However, given that the issue of capacity has been raised, and in light of AN’s age, this may yet become a case that should appropriately proceed in the Court of Protection, in which case the court could appoint the Official Solicitor as AN’s litigation friend. In circumstances where no officer of Cafcass was available at short notice, and pursuant to the Attorney-General’s Memorandum of 19 December 2001, paragraph 3, the Official Solicitor was satisfied that this was a case where ‘there is a danger of an important and difficult point of law being decided without the court hearing relevant argument’, as reconfirmed and explained in the President’s Guidance dated 26 March 2015.

Cusworth J, in a written judgment delivered after the events of the night during which the hearing took place, summarised the case law on the operation of the inherent jurisdiction in relation to capacitous minors, and continued:

16. In this case, the factual background is clear and not in dispute. I accept the evidence of Dr X of the risks to AN if she goes home over the weekend and begins her treatment, but without the intravenous fluids that would protect her kidneys and the regular and reliable testing that would come with her admission. There is a clear and very serious further risk to AN’s already compromised health if she is not admitted for treatment tonight. And she is currently in a bed in the hospital and allowing treatments to be administered to her.

17. Furthermore, the fact of an existing underlying infection suggests that the prospects of unmanageable damage occurring before the matter can come back before a court remain significant. Given that to be effective, once necessary tests have been administered to AN, after allowing final decisions about her representation to be taken, and then to get her further instructions, a court hearing next week cannot be before Wednesday 14 February, the period of concern for the court is some 5 nights. Unless AN has a change of heart, or there is a further emergency, the question of her admission would next fall to be considered then.

18. In all of those circumstances, this is clearly a case in my judgment where intervention would be appropriate, if justified in the interests of AN’s welfare. I do however pay serious regard to her expressed views and wishes and to those of her parents, both in supporting her and for their own part in advocating for a return home for their daughter. She is clearly an intelligent and articulate young person who, despite the most traumatic of circumstances has nevertheless been able to converse at length with her doctors and in so doing impress on them her capacity and her awareness of her situation. It is not a surprise that she has found the final step, of acknowledging the gravity of her diagnosis and consenting to immediate and demanding treatment a hard one to take over such a short period of time. I remind myself that just this time last week, all of the events since her diagnosis were completely unforeseen and unforeseeable. She has in fact coped remarkably well with the most terrible of situations. It is completely understandable that she would like to be at home.

19. In that situation, I have given very careful thought to whether AN’s autonomy should be respected, and she should be given the additional time to process her position which is in effect what she feels that she needs. However, I have come to the very clear view that, notwithstanding her age and her expressed wishes, her welfare needs do dictate that she must now remain where she is and commence inpatient treatment as Dr X urgently recommends. I bear in mind that this is not a young person who is refusing treatment, but rather one who clearly says that she wants to be treated, but simply wishes to delay the commencement of that treatment. The evidence is very clear that such a delay risks seriously compromising the efficacy of the treatment. The potentially extremely serious side effects of the steroids which AN would be taking at home would not be mitigated by the intravenous hydration which could be provided in a hospital setting. Further, chemotherapy, which would otherwise begin at the start of next week, would almost certainly be delayed, increasing further the risk of the cancer proving fatal.

20. In this case, both the likelihood of an infection causing a serious negative impact on AN’s health if the treatment outlined by Dr X is not now started, and the extreme consequences of such an impact for AN, are clear. As against those dangers, alongside of course AN’s own clearly expressed wish for more time, I have to weigh the very positive potential outcomes if the treatment is commenced immediately without those risks being run. In those circumstances I am clear that the balance falls comfortably in favour of intervention, and in acceding to the Trust’s application for an order which will keep AN in hospital where she is now, so that the life-saving treatments which are available can be administered to her.

21. I hope that she will understand this decision and accept the treatments as offered, as Dr X anticipated that she would. I was gratified to understand from Ms David that the Trust do not propose any physical or chemical means of restraint in order to administer AN’s treatment, but rather just to ensure that she is not free to leave the hospital, in the expectation that while she is there, she will permit the treatment that she so badly needs.

At the time of writing, there is no record of what happened at the subsequent hearing; one hopes that, by that time, an agreement had been reached between AN and the treating team about the way forward.

Apart from being a useful reminder of how the courts are available 24 hours a day / 7 days a week for truly urgent cases, the decision is also of interest for the extent to which the questions in issue were filtered through the prism of capacity.  This was clearly right, but the whole question of decision-making in the context of 16-17 year olds is riddled with unnecessary complexity: see further here for my attempt to make things slightly clearer.

The case also stands as an interesting counterpart to the decision in ST in the context of patients who find it difficult to accept a diagnosis and prognosis: ST is to be heard in the Court of Appeal on 1-2 May, and will hopefully shed light about how to think through such situations applying both the letter and the spirit of the MCA 2005.



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