Bearing Witness: Anorexia Nervosa and NG Feeding

By Clare Fuller – 17th August 2020

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

Yesterday I bore witness. I cannot think of an opening statement to articulate the experience better; to describe it as reporting of facts or a learning opportunity diminishes the very human experience at the heart of this case.

In writing I remain mindful of the anonymous life that was scrutinised in the Court of Protection and wish to acknowledge the dignity of AB, the young lady at the heart of this case, and the suffering she endured initially as a victim of bullying at school and then a life dominated by anorexia nervosa. I wish to also acknowledge the compassion shown by Mrs Justice Roberts in her communication with AB throughout the hearing (at which AB was present) and especially in her communication with her at the end where she addressed AB directly (see a blog commending this practice, here), reassuring her that there was “no risk at all” that her judgment would authorise naso-gastric [NG]  feeding against AB’s wishes.

So how do I come to be writing about this at all? It would seem somewhat out of my area of interest and expertise as a palliative care nurse. My interest was piqued by a Twitter post from Celia Kitzinger, co-director of Open Justice Court of Protection, with whom I have previously exchanged correspondence relating to capacity and decision making from both a professional and personal view. She alerted me to the hearing, which was open to the public,  and I followed this up with an email request to the Court of Protection judicial team in which I identified the time and date of the hearing, the name of the judge, the case number and my position as a Registered Nurse with an interest in the Mental Capacity Act 2005.  I received a swift response from the Court Clerk with a link to Microsoft Teams to join the hearing.

The hearing centred around AB, a woman in her late twenties with a 13-year history of anorexia nervosa.  It followed two earlier court hearings (see this blog for a summary of one of the earlier ones), including a ruling that AB had litigation capacity to instruct counsel to represent her. This meant she had instructed her own solicitor and barrister for this hearing, rather than being represented via the Official Solicitor. 

After joining the hearing, it took me a while to fully appreciate the nuances of the case as initially it appeared that agreement had already been reached; everyone agreed that it was not in AB’s best interests to be fed via NG tube against her wishes.  The arguments presented by both parties demonstrated the complexities of the law and the challenges of applying section 3 of the Mental Capacity Act 2005, specifically the ability to use or weigh information as part of the decision-making process.

We heard first from the Doctor who knows AB well and described AB’s illness as “severe and enduring”. AB has been treated unsuccessfully for anorexia nervosa for many years and the Doctor summarised the current position by stating that “rather than trying to force someone into recovery it is about improving quality of life”.  AB has had multiple admissions for forced NG feeding, which she described in detail in her witness statement. The Doctor felt that in this case “the gain you get from it does not justify the input” and highlighted the very real threat of organ failure by re-feeding syndrome potentially caused by feeding after a period of malnourishment (AB’s current weight is around 26 kg or 4 stones, with a BMI of 9.7). At best interests meetings it had already been decided that AB’s management would be “symptom focused healthcare”.

This hearing however did not hinge on whether or not to feed AB against her will, using restraint,  but on whether she has capacity to consent to or to refuse NG feeding (in which case the Court of Protection has no jurisdiction and it is a decision for AB to make for herself) or whether she lacks that capacity – in which case the decision about NG feeding should be made for her by the treating team and, now, the Court, on the basis of her best interests.

The Doctor presented the case that while it would not be in AB’s best interests to receive NG tube feeding, she did not have capacity to make this decision herself. The argument that she does not have capacity to refuse NG tube feeding was based on what was considered to be AB’s ‘over-valued idea’ that it is desirable to be thin and to avoid being fat. This ‘over-valued idea’, the Doctor said, infected her ability to weigh things up appropriately.

AB does not agree. She wants to make her own decision about the NG tube: “”it is a decision that I do not want to be made by anyone else: not by my illness, not by my team, not by anybody”.  Her counsel argued that AB was not fighting to be thin but fighting not to be force fed (while understanding this would lead to death).

We had an indication of what AB had experienced through her Doctor’s account: however to hear AB’s own statement felt like being given a window into her world. AB requested her statement to be read by her solicitor: that did not diminish the impact of her words. We heard AB’s view on her illness, the root of this and the impact of 11 admissions and forced NG tube feeding on her physical and mental health. AB described articulately and in harrowing detail the physical restraint used and the impact this has had on her.

“To say simply that I have had 11 in-patient admissions doesn’t in and of itself convey what happened during those admissions.  It couldn’t.  I have been held down by my legs with a tube thrust forcefully and forcibly up my nose.  I have had food inserted through a syringe so quickly and violently that I was sick.  I have had my mobile phone removed from me so that I couldn’t call my friends or my family, and they couldn’t contact me.  I have been restrained and force fed in front of other patients. I have been left covered in bruises and scratches.  I have been thrown down on to a bed because I refused to sit in a chair.  I have had my feet stamped on when being manhandled.  I have been lied to, blackmailed, promised that something would happen, only to then be told that it won’t, and threatened.  I have been searched on returning from leave, as have my parents.  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.  In turn, I have kicked and screamed until I’ve been hoarse.”

AB

My thoughts at this point were on the suffering AB has endured that led to her illness, the suffering she has experienced as part of her illness, and the pain her parents must be experiencing. As a Mum I cannot begin to imagine the feelings of powerlessness in such a situation.

Despite the restrictions of her illness, AB also said she wanted “to continue living the life that I love, with those who I love, and those who love me… It is a life that I lead one day at a time, making the most of each day, not knowing whether one day I will simply not wake up”.  She described gaining much pleasure from interactions with family and with her pets (a husky, a parrot, a tortoise and a ferret). 

AB recognised the voice of anorexia nervosa – she described it as a “bullying and powerful voice”.  But, she said, “the voice making this particular decision [about NG feeding] is mine”:

“It is a voice made hoarse by screaming, and tearful by the prospect of being forcibly treated against my will – knowing all the while both that any such treatment may cause my death in any event, and that, even were it not to, the likelihood of it ‘working’ is minute.  I do not believe that anyone would agree to undergo further inpatient treatment knowing what it entails and if told, as I have been, that the chances of ‘success’ – whatever that actually means – are so low.”

AB

So, it would appear simple. AB does not wish to be restrained to be fed and the medical team do not feel it is in AB’s best interests to be restrained (for a likely period of at least 6 months) to be fed. Where then is the disagreement between the parties and why does it matter?

Crucially, the parties disagree about whether or not AB has the capacity to make the decision to refuse medical treatment herself.

The debate that followed revealed some of the infinite loop or circular argument if it were claimed that AB lacks the ability to make a capacitous decision about nutrition because she has anorexia nervosa. The barrister representing AB in court argued that:

 “the autonomy of people with anorexia should be guarded as vigorously and rigorously as those with different impairments of the functioning of the mind and no assumptions should be made about the decisions they are capable of making.  The statutory presumption of capacity applies as much to those suffering from severe, life-threatening anorexia as it does to all others.”

Counsel for AB

What I took from observing the hearing are two key points:

• First, a finding that AB has capacity would mean that she retains her right to autonomous decision-making. The outcome likely (no NG feeding) remains the same, however decision-making would be clearly driven by AB and not made in her best interests. This matters to AB.
• Second, if the Court finds that AB has the capacity to make decisions about whether or not to undergo tube feeding, then she will be in a position to make an Advance Decision to Refuse Treatment (ADRT) which is only possible if you have capacity to make the relevant decisions. This would provide her with lifelong protection from that unwanted treatment if she loses capacity.

This is my first experience of being present for a Court of Protection hearing. I will be reflecting on the hearing as part of my professional re-validation process and all elements of our Nursing and Midwifery Code of Practice were relevant.  (These are: prioritise people, practice effectively, preserve safety and promote professionalism and trust). I would urge other nurses to consider attending the Court of Protection as part of their professional development: the Open Justice Court of Protection Project provides excellent support for anyone wanting to do this.

Listening to the barristers’ arguments was compelling and I learned much about the Mental Capacity Act 2005. Before the case I was fully aware of section 3 of the Act (the ability to use or weigh information as part of the decision-making process), but had not appreciated the full application of this and the challenges there could be in demonstrating that this requirement was met.   What would I rule if it was my power? Listening to my head and my heart and with the evidence presented in Court I would say that AB has capacity to decide her future. My head applies the MCA and I find AB able to understand and retain information and to communicate her decision – that was never in question. Crucially I consider, on the basis of her witness statement (from which I have quoted above) that AB has insight and the ability to weigh up information despite her illness – the question that matters most in this case. My heart listens to a young lady who has suffered enough: she is asking to maximise the quality of her life and to spend her life doing the things she loves with the people she loves. The questions I would ask AB now would be drawn from Atul Gawande’s “5 Questions to Ask at Life’s End”:

• What is your understanding of where you are and of your illness?
• Your fears or worries for the future
• Your goals and priorities
• What outcomes are unacceptable to you? What are you willing to sacrifice and not?
• And later, what would a good day look like?

At the time of writing a decision has not been made.  Mrs Justice Roberts acknowledged the need for swift decision making given the fragility of AB’s current health. If AB is found to have capacity to make a decision about her own nutrition, this will be a landmark ruling for patients with anorexia nervosa.

I started writing by saying that yesterday I bore witness and I end by reflecting on the impact that observing this case has had on me. Without doubt, the biggest impact is thinking of both AB and her family.   I now also have a better understanding of the application of the Mental Capacity Act and specifically the finely balanced argument that surrounds the ability to make a capacitous decision. I will be reading the judgment to better understand how the judge made sense of the arguments on both sides and arrived at her decision that AB either does, or does not, have the capacity to make her own decision about the NG tube.

Clare Fuller RGN MSc is Lead Practitioner for Palliative and End of Life Care.  She tweets @ClareFuller17