“I have reached a clear conclusion that AB lacks capacity to decide whether or not she should be tube fed.” – Commentary on Judgment

By Lily Wildman and Emma Christie – 28th August, 2020

The judgment in the case of AB, the anorexic woman refusing tube feeding, was handed down this week (Northamptonshire Healthcare NHS Foundation Trust v AB [2020] EWCOP 40 (16 August 2020))

We observed the final hearing (and blogged about it here) as well as one of the earlier ones (here). In this blogpost we reflect on Mrs Justice Roberts’ judgment and consider whether an opportunity was missed to recognise the limited circumstances where patients with severe and enduring anorexia nervosa may have the capacity to make decisions with regards to their nutritional treatment.

This case concerned a young woman (AB) with anorexia nervosa. In a previous hearing it had been established that AB had litigation capacity and could instruct her own legal team.  In the final hearing, the issue for the court was whether AB had the capacity to make decisions relating to her ongoing medical treatment – specifically, in relation to naso-gastric (NG) tube-feeding, which she wished to refuse.

In fact, the Applicant NHS Trust was not seeking to administer NG tube-feeding. Doctors employed by the Trust were in agreement that NG tube-feeding would not be in AB’s best interests. The key question was whether NG tube-feeding would not be administered because it was not in her best interests, or whether it would not be administered because she had refused it.  The issue of whether AB had the capacity to make her own treatment decision goes to the heart of her autonomy and the principles at the core of the Mental Capacity Act 2005 (the Act).

Mrs Justice Roberts decided that AB lacked capacity to refuse NG tube-feeding. She also held that NG tube-feeding would not be in her best interests. There is a presumption in favour of capacity ( s. 1(2) of the Act) and a lack of capacity cannot be established as a result of a condition which might lead others to make unjustified assumptions about a person’s capacity (s 2(3) of the Act).   In previous cases before the court (such as E, L, X, W and Z,[1]as discussed by Emma Cave and Jacinta Tan), the very nature of anorexia nervosa has been articulated by medical experts to mean that patients lack capacity to make their own decisions about nutrition because they are unable to weigh information about their nutritional treatment, due to their extreme aversion to weight gain.  We discussed whether this approach encroaches on the creation of a blanket presumption of incapacity for patients with anorexia, meaning that they are unable to have autonomy over decisions about their nutrition.

Mrs Justice Roberts recognises this general description of anorexia nervosa as applicable to AB, describing it as ‘the development of a profound and illogical fear of weight gain’.

It seems that the judge was unable to view AB as having capacity due to the ‘insidious’ influence that anorexia nervosa had on AB’s decision making, infecting AB’s reasoning to the extent that it was no longer capacitous in relation to decisions that might result in weight gain. We understand the reasoning of Mrs Justice Roberts, who was unable to see in the case before her an example of reasoning that was not critically impaired by an irrational fear of weight gain. This is despite her observation that “AB is an intelligent and emotionally responsive young woman who is both thoughtful, articulate and insightful in terms of the position in which she now finds herself.” (para. 46 of the judgment)

While every case turns on its own facts, similar expert views were expressed in A NHS Foundation Trust v X [2014] EWCOP 35 140 BMLR 41 and In Re W (Medical Treatment: anorexia) [2016] EWCOP 13 151 BMLR 220, decided respectively by Cobb J and Peter Jackson J (as he then was).  Both judges concluded that he individuals in those cases lacked capacity in relation to decisions about their illness and treatment. Therefore, previous case law falls overwhelmingly in favour of the medical assessment that anorexia nervosa patients lack capacity to make decisions about their nutrition due to their inability to weigh the relevant information. However, it is clear from the judgment and previous statements throughout the hearings, that Mrs Justice Roberts explicitly recognises that AB and her interests are what lie at the very heart of this case, and that her decision must not be based on a comparative analysis of case law.

As Cave and Tan argue:

 “The courts should take a patient-centred rather than clinician-centred approach to framing the decision that is subject to a capacity assessment. Whilst Anorexia Nervosa sometimes affects decision-making capacity in relation to nutrition, this does not preclude a finding that the patient has sufficient capacity regarding end of life decisions.” (p. 5)

Cave and Tan, 2017

Nevertheless, we feel a slight sense of disappointment as a legal opportunity may have been missed. We agree that AB may lack capacity to make decisions with regards to putting on weight. Given the severe and enduring nature of AB’s anorexia nervosa, it may be correct to argue that this condition means that she is unable to weigh information about putting on weight, as envisaged in s 3(1)(c) of the Act. However, it was agreed by the NHS Applicant Trust and Counsel for AB that NG-tube feeding would not lead to AB’s recovery from anorexia, nor was it likely to save her life (in fact it posed its own risks to her life via ‘refeeding syndrome’).  This was why NG tube-feeding was found not to be in AB’s best interests. Accepting this agreed position, then, we see the relevant decision facing AB as one about end of life care, rather than about nutritional intake as such.

A patient-centred assessment of capacity will flexibly interpret the decision about which capacity is assessed by reference to the patient’s views on the value of treatment. A patient who lacks capacity to make a decision about their nutrition may have capacity to determine that treatment is no longer worthwhile. 

We agree with the patient-centric approach advocated by Cave and Tan, and apply it to this case to argue that, in the context of a decision about palliative care, AB may indeed have the capacity to refuse consent to the NG-tube as (potentially) life-sustaining treatment.

The decision confronting AB could be characterised as choosing between a (possibly) shorter life of better quality (at home with her family and pets) and a (possibly) longer life – dominated by restraint and NG-feeding (which itself could cause death from refeeding syndrome, and which her medical team was unwilling to administer).  We did not see evidence presented to the court suggesting that AB lacked capacity to judge whether quality or duration of life was more important. The same point is made by Daniel Wang (cited in Cave and Tan), who argues that the narrow way in which the patient’s decision was characterised by the Court in an earlier case (A NHS Foundation Trust v X [2014] EWCOP 35)

 “… led to an application of the Mental Capacity Act 2005 that is incompatible with the UN Convention on the Rights of Persons with Disabilities because, based on a diagnosis only, anorexia nervosa patients were denied the right to decide where the balance lies between quality and duration of their own lives”

Wang (in Cave and Tan, 2017)

As in the case analysed by Wang, we suggest that the relevant decision for which AB’s  capacity assessment was required was not necessarily whether to refuse or accept nutrition, but whether to refuse or accept treatment that she considered futile. (p.14)

With these issues in mind, we suggest that rather than assessing AB’s capacity in relation to naso-gastric feeding which may (or may not) improve her physical condition, instead it may be more appropriate to assess her capacity to decide between continuing treatment which has a low chance of success and opting for palliative care. We tentatively suggest that with regards to this latter issue, there may be insufficient evidence to rebut the presumption in favour of capacity.

The outcome of the judgement is the same for AB, regardless of whether she is deemed to have capacity or not, since NG feeding is judged not to be in her best interests.  But a judgement in line with our argument would have given effect to her autonomy and recognised that it is her decision to seek palliative care, rather than a best interests decision made by the judge on her behalf.

Lily Wildman is an aspiring barrister who has justgraduated with a law degree from Durham University and will be commencing the Bar Practice Course in September this year.  During the COVID-19 pandemic, she worked as a Care Assistant at a Nursing Home, which honed her awareness of the safeguards surrounding adults who lack capacity. She tweets @lilymwildman

Emma Christie is an aspiring barrister who has recently graduated from Durham Law School and will be returning to pursue an MJur researching the Domestic Abuse Bill (2020).  She has experience volunteering with dementia patients. She tweets @emmaleechristie

Image by Iñaki del Olmo on Unsplash

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[1] Re E (medical treatment: anorexia) [2012] EWHC 1639; The NHS Trust v L and Others [2012] EWHC 2741; A NHS Foundation Trust v Ms X (Official Solicitor) [2014] EWCOP 35; Re W (medical treatment: anorexia) [2016] EWCOP 13; Cheshire & Wirral Ptnr NHS FT v Z [2016] EWCOP 56.