Force feeding not in anorexia patient’s best interests

26 August 2020 by Rosalind English

Northamptonshire Healthcare NHS Foundation Trust v AB [2020] EWCOP 40

In this carefully nuanced judgment, the Court of Protection has ruled that although a patient with a chronic eating disorder would in all probability face death she did not gain weight, it would not be in her best interests to continue being subjected to forced feeding inpatient regimes.

AB is a 28 year-old woman who has over many years suffered from anorexia nervosa. She was first diagnosed when she was a teenager of 13 and now has a formal diagnosis of a Severe and Enduring Eating Disorder (‘SEED’).

The NHS Trust and the team of treating clinicians who have been responsible for providing care for AB applied to the COP for declaratory relief pursuant to ss 4 and 15 of the Mental Capacity Act 2005 in these terms:
(i) it is in AB’s best interests not to receive any further active treatment for anorexia nervosa; and that
(ii) AB lacks capacity to make decisions about treatment relating to anorexia nervosa.

Issues before the Court

Litigation capacity: it was not in issue that AB did have the capacity to instruct her solicitors.

General capacity: this was a more difficult question to be decided under Section 3 of the Mental Capacity Act. The key question was, did she have the mental capacity to make a decision about the specific medical treatment proposed. Roberts J had to decide one way or another on whether she should be tube fed, probably under sedation (otherwise she would remove the tube).

The Trust argued that she did not have this capacity, relying on evidence from AB’s treating psychiatrist Dr B. AB said she did have this capacity.

Best interests: was it in AB’s interests to discontinue any tube feeding? The unanimous professional view of her treating team was that palliative care and no further tube feeding was in her best interests. However, since the decision not to have any further forced feeding was a life-threatening one, the case had to be referred to the Court of Protection.

Capacity

Roberts J noted that she could not treat AB as being incapacitous in relation to decisions about her medical treatment merely because she had made a decision which was unwise. That would be to allow the “tail of welfare to wag the dog of capacity”. (Peter Jackson J’s words in Heart of England NHS Foundation Trust v JB [2014] EWHC 342 (COP) at para [7]

Nor was the outcome of the decision in respect of which capacity was in issue relevant to the specific enquiry into capacity for the purposes of the 2005 Mental Health Act. The decision not to undergo potentially life-saving treatment through nasogastric tube feeding might be seen as an “unwise decision with potentially fatal consequences.” However, to do so would risk introducing into the capacity test under the MHA

elements which risk penalising individuality and demanding conformity at the expense of personal autonomy in the context of a diverse, plural society which tolerates a range of views on the decision in question, per MacDonald J in Kings College Hospital NHS Foundation Trust v C and V [2015] EWCOP 80 at para 30

And, as MacDonald J said in Kings College Hospital NHS Foundation Trust v C and V (supra) at para 38:

… a person cannot be considered to be unable to use and weigh information simply on the basis that he or she has applied his or her own values or outlook to that information in making the decision in question and chosen to attach no weight to that information in the decision making process.

In this context the judge was aware of the risk, in cases of vulnerable adults, that all professionals involved with treating and helping that person – including, of course, a judge in the Court of Protection – may feel drawn towards an outcome that is more protective of the adult and thus, in certain circumstances, fail to carry out an assessment of capacity that is detached and objective.”

However Roberts J decided that, given the chronic nature of AB’s illness and its current clinical presentation, her decision in connection with food were so infected and influenced by her “fixated” need to avoid weight gain at all costs that true logical reasoning in relation to these specific matters was beyond her capacity or ability.

In my judgment, the fact that she does not want to die and sees many reasons to continue living are, in themselves, the clearest manifestation of the extent to which her judgment is impaired in relation to this narrow field of decision making.

She therefore concluded that AB lacked the capacity to decide whether or not she should be tube fed. On the other hand, this finding did not result in a requirement that AB should undergo further tube feeding. To embark on that course would anyway now be futile and may well precipitate her death in any event.

Best interests

Anorexia nervosa (from the Greek an-/without -orexia/appetite) is a pernicious condition. In its severe form it is life-governing and potentially fatal. In order to stay alive, a human being needs air, water and food. The normal energy intake for an adult woman is about 2,000 calories a day. A healthy Body Mass Index (BMI) is between 18.5 and 25. If the body uses more energy than it gains over a prolonged period, the result is malnutrition, with a global effect on well-being. The physical consequences can include endocrine disorder preventing the onset of puberty, slow heart rate, low blood pressure, hypothermia, anaemia, reduction in white blood cells, reduction in bone density and reduced immune system functioning.

Since AB was diagnosed with anorexia at the age of 13, she had been admitted to hospital under compulsory treatment orders for nano-gastric feeding eleven times. According to Dr B, AB found this “incredibly distressing”. It was, quite simply, physically and psychologically too traumatic for her and there was a clear risk that she may suffer a cardiac arrest as a result of “refeeding syndrome”.

In the course of building up a rapport with AB, albeit over a video link, the judge gained “the clear impression 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. The depth of her emotional attachment to, and love for, her parents and close family is transparently clear.”

Roberts J was struck by AB’s description of her hospital experiences, which I reproduce here at length:

To say however 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 then to 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 wondered whether in fact the mental stress of being treated against her will would eventually kill her.

Roberts J ordered that a declaration that palliative care was in AB’s interests should therefore to be made. She was also at pains to make it clear that AB’s inability independently to make an Advance Decision about the prohibition on future tube feeding (for example in the event of an emergency admission) should not expose her to the possibility of this intervention by a different hospital or Health Trust.