A Patient with Severe and Enduring Anorexia Nervosa: The need for a declaration and the capacity to make a decision

By Lily Wildman and Emma Christie – 18th August 2020

The judgment has since been published here:Northamptonshire Healthcare NHS Foundation Trust v AB [2020] EWCOP 40 (16 August 2020)

[N.B. This is an account of a different perspective on the hearing discussed by Clare Fuller in her blog of 17th August 2020, here – Bearing Witness: Anorexia Nervosa and NG Feeding]

Today (Friday 14 August 2020) we attended another (remote) hearing in the Court of Protection concerning AB.  The issue before the court was whether a young woman (AB) with severe anorexia nervosa has the capacity to refuse consent to naso-gastric (NG) tube feeding. (Last week’s hearing, as touched upon in our previous blog post, concerned whether AB had litigation capacity to instruct her own legal team, deciding this in the affirmative.)  In addition to the issue of capacity, this blog post will consider whether decisions which doctors would not in conscience be prepared to carry out, and where parties are in agreement as to the outcome, should continue to go to court in order to seek a declaration.

The Need for a Declaration

If doctors won’t in conscience do it then they shouldn’t be coming to court.

Ms Katie Gollop QC: (counsel for AB)

The applicant in this case (the NHS Foundation Trust) sought a declaration from the court that: a) AB lacks capacity to make decisions about treatment relating to anorexia nervosa and,  following that determination, b) it is in AB’s best interests not to receive any further active treatment for anorexia nervosa. It was clarified in the proceedings that “active treatment” refers specifically to NG tube feeding as no other proposed treatment would help given the severity of AB’s condition. The respondent’s (AB’s) argument was that she does have capacity to make that decision for herself (and her decision is not to receive NG tube feeding).

In this section we consider whether it is necessary for the court to make a declaration. In Re Y (2018) (UKSC 46) Lady Justice Black considered whether it was necessary for cases considering the removal of Clinically Assisted Nutrition and Hydration (CANH) from patients with a prolonged disorder of consciousness, and the removal of life-sustaining treatment more generally, to go to court for a declaration. In Re Y, the patient had been diagnosed as being in a vegetative state. He required CANH in order to prolong his life. The family and clinical team were in agreement that it was not in Y’s best interests to continue receiving CANH and instead of applying to the Court of Protection to seek a declaration that it was lawful to withdraw it, they had applied for a declaration that it was lawful to withdraw treatment under these circumstances without recourse to the court.  The judge granted this  and the Official Solicitor brought an appeal to the Supreme Court (leapfrogging the Appeal Court since the matter was urgent). The Supreme Court hearing went ahead despite the fact that Y died of infection in the meantime.

At paragraph 126 in the Supreme Court judgment, delivered by Lady Justice Black,  it was held that there is no mandatory requirement to seek a declaration where the removal of CANH or life-sustaining treatment is concerned. In dismissing the appeal brought by the Official Solicitor, Lady Justice Black stated that: “if the provisions of the M[ental] C[apacity] A[ct] 2005 are followed and the relevant guidance observed and if there is agreement upon what is in the best interests of the patient, the patient may be treated in accordance with that agreement without application to the court.” In addition to setting out this general principle, Lady Justice Black listed three categories of case where, whilst not a legal requirement to do so, it may be in accordance with “good practice” to apply to the court for a declaration. Firstly, where the conditions in the MCA are not clearly satisfied, secondly, where there is a division of medical opinion and thirdly, where the family members disagree with what is in the best interests of a patient.

Applying Re Y to the facts of AB (today’s hearing,) there is no legal requirement for a declaration to be sought. Whilst not providing NG feeding to AB will ultimately result in her death, this is not in and of itself a justification for bringing a case to the court. In addition to this, the provisions of the Mental Capacity Act have been complied with (see below) and the NHS Applicant Trust and the family members support the decision that NG tube feeding is not in AB’s best interests. Indeed, additionally, at the end of today’s proceedings, counsel for AB, Ms Katie Gollop QC, sought an assurance to allay AB’s fears that the judge might require her to  receive  the proposed treatment:  Lady Justice Roberts assured her that she would not and this was not an assurance which the NHS trust sought to oppose. Therefore, with today’s hearing beginning and ending with NG feeding not being a proposed treatment, it begs the question whether this case needed to come to court for a declaration.

On the one hand, given that an agreement that NG tube feeding was not in AB’s best interests, it could be considered to be somewhat straying into the hypothetical to consider a proposed form of treatment which the clinical team for AB seems uncomfortable in providing. In his evidence, Dr B stated that in NG tube feeding in this case “the gain does not justify the input.” Indeed, if this is the finding and given AB’s past experiences of the proposed treatment (considered fully below), it seems odd to be discussing this treatment at length and in such a distressing environment.

However, whilst the best interests question was agreed by the parties, the authors are in agreement with counsel for AB, Ms Gollop QC, who states that notwithstanding this, “the Trust acted properly and correctly in bringing the application.” Firstly, AB herself in her witness statement emphasises the importance of having autonomy over the decision to refuse NG tube feeding. Balancing paternalism with a patient’s autonomy is central to the provisions under the MCA. As Herring et al. argue, “each person should be free to develop and live out their version of the good life.”[1] We argue that recognising the decision to refuse NG tube feeding as AB’s decision would formally recognise her autonomy to make decisions which are respected and followed by medical professionals. A further justification for bringing this case to court, as raised by Ms Katie Gollop QC is that, given the likelihood of cardiac arrest or further medical complications as a result of AB’s condition, it is necessary to ensure that medical professionals outside of the applicant Trust would not attempt to administer NG tube feeding. Therefore, we agree with counsel for the respondent that this is illustrative of a case where a declaration should be sought.

Although Lady Justice Roberts has not yet made a finding as to AB’s capacity (or lack thereof), it is submitted that, whilst not a legal requirement, this case is illustrative of where it may be “good practice” to seek a declaration from the court because the key issue of AB’s capacity was disputed. This central issue concerns AB’s autonomy; her right to make her decision to refuse NG feeding. The submissions with regards to capacity are considered fully, below.

The Issue of Capacity

Whether AB has capacity or not to refuse NG tube-feeding was the key issue in today’s hearing. S 1(2) of the Mental Capacity Act 2005 (MCA) states that there is a presumption in favour of capacity.  This can be rebutted by reference to the criteria set out in ss2 and 3. In order for the presumption of capacity to be rebutted (and for a person to be deemed to lack capacity to make a specific decision), they must be assessed as being unable to understand, retain, and/or weigh the information required to make a decision (and to communicate their decision e.g. vocally, via sign language, or other means), and this inability must be due to an impairment or disturbance in the functioning of the mind or brain.

Where a patient has capacity to make the relevant decision, the Court of Protection has no jurisdiction. The issue of capacity was at the heart of the expert witness evidence from Dr B who had been part of AB’s clinical team for a number of years. In his evidence, he submitted that he believed AB failed the capacity test under ss2-3, on the basis that she was unable to weigh the information related to the NG feeding (S 3(2)) because she finds it so “aversive”.  He claimed that the reason why she found it so aversive was “partly or wholly as a result of not being able to allow herself to have an increase in nutrition which is a direct consequence of her mental disorder”.

The capacity of patients with severe and enduring anorexia nervosa to make decisions about their own nutrition is a contentious area. Emma Cave and Jacinta Tan in their article ‘Severe and Enduring Anorexia Nervosa in the Court of Protection in England and Wales,’ state that courts should take a patient-centred rather than clinician-centred approach when considering capacity.  It is possible to see that, in some cases, anorexia nervosa may affect the capacity of the patient to make decisions in relation to their nutrition. However, this assessment should be case specific and not applied as a general presumption. Further, even where P does lack capacity in relation to their nutrition, it does not, necessarily, mean that the patient lacks capacity in relation to all medical decisions.

The skeleton argument of the respondent (AB) identifies five cases where individuals living with anorexia nervosa were all found to lack both litigation capacity and capacity to make the relevant treatment decision. These were the cases of E, L, X, W and Z, all between 2012-2016.[2]   In the present case, however, it has already been established that AB does have litigation capacity. Further, Ms Katie Gollop QC used the case of Re E, to refer to a passage from the judgment of Peter Jackson J (as he then was) which discusses the potential Catch 22 situation that can arise in relation to capacity and anorexia. This Catch 22 is the claim that the nature of anorexia nervosa directly affects whether P will decide in favour of proposed treatment, with a preoccupation on whether weight-gain will result. This reasoning has caused medical experts to conclude patients lacked capacity, as the very nature of anorexia nervosa, it was argued, precludes patients from weighing the information with regards to treatment options.

Indeed, in today’s hearing, Dr B submitted that AB was holding onto the ‘overvalued idea’ of avoiding weight gain, resulting in an inability to ‘weigh things appropriately’. In AB, Ms Gollop QC described this argument as ‘circular’. Indeed, it does appear that, to use the nature of anorexia nervosa to preclude capacity, may come close to a blanket presumption as to whether any patient with the condition can have the capacity to refuse their consent to treatment.

We consider this to be a disconcerting idea, as it assumes that there are no capacitous reasons that patients could give to refuse treatment, or at least, that patients are inextricably bound to the voice of their illness in all aspects of their decision-making. This line of reasoning was rejected in the case of Re SB, where experts asserted that P could not weigh the information in such a way that it be said she had capacity to consent to an abortion. In spite of this, P was indeed able to provide rational reasons for not wanting to have the child. P was held by the judge to be able to consent to the termination of her pregnancy on the basis of this ability to provide rational reasons for going ahead with the abortion.

After hearing the statement of AB, we are unconvinced by the idea that anorexia nervosa patients are unable to extract their decisions from the voices of their illness. In her statement AB wrote that, ‘my illness is a part of me, but it is not all of me; it does not define me, and that is where I think that Dr B is wrong’. In her statement, AB was able to lucidly express a number of reasons why she wished to refuse treatment. Crucially, none of the reasons she gave related specifically to a fear of putting on weight. Instead, they refer to the effect of past experience of force feeding on AB, the risks of tube feeding, futility of NG tube feeding and the desire to focus on her quality of life.

AB gave a harrowing account of her past experiences as an in-patient. She started by saying

I have been held down by my legs with a tube thrust forcibly up my nose. I have had food inserted through a syringe so quickly and violently that I was sick.

AB

It is clear that the treatment has been highly traumatic, both physically and emotionally for AB, and she does not wish to repeat such experiences. In addition to AB’s negative experiences in the past, she has also been able to weigh the benefits and drawbacks of the treatment, stating

I do not want to die, and I do understand what the illness is doing to me, and the consequences of continuing down the path that I am on. Similarly, though, I also understand what the physical risks, as set out by Dr B, of forcibly feeding me now are, and I wonder in addition whether in fact the mental stress of being treated against my will would kill me.

AB

The medical evidence of the case sets out life-threatening risks of tube feeding. In addition to this, AB has considered that there is unlikely to be a lasting benefit to her health if she is tube fed: this is because while she is able to gain weight in the short-term, this weight has never been able to be maintained in her 13 years of suffering from anorexia nervosa.

Finally, the importance that AB places on her autonomy is undeniable and goes to the heart of the principles under s 1 of the MCA, which holds that a person must be presumed to have capacity, respecting the person’s rights and freedom of action. In her statement, AB expresses:

I have been helpless – and watched helplessly – as every aspect of my life, every aspect of my being, has been controlled by those with the power to do so’

AB

Rather than seeing a voice controlled by her condition, we see an articulate consideration of her quality of life, a consideration of the long-term prospects of treatment and an expression of her personal autonomy. The following words of AB ring in our minds as we wait for a judgment to be handed down in the coming days:

The decision not to undergo further inpatient treatment is mine. The illness is a part of me, yes. It is a voice, yes. It is a bullying and powerful voice, yes. But the voice making this particular decision is mine.

AB

The judgment for this hearing will be handed down within the next week. If AB is found to have capacity by Mrs Justice Roberts, this will be the first case in England and Wales since 2012 in which a patient with severe and enduring anorexia nervosa is found to have capacity to make her own decisions about nutrition.

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

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[1] I. Goold and J. Herring, ‘Great Debates in Medical Law and Ethics.” (Palgrave, 2014)

[2]  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.

Photo by Thiago Cardoso on Unsplash