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

In this case, the Court of Protection concluded that AB, a woman with chronic and severe anorexia nervosa, lacked capacity to make decisions about treatment for anorexia nervosa, and that it was in her best interests not to receive any further active treatment for anorexia nervosa.

This case contains useful guidance for practitioners, healthcare providers and commissioners on the Court of Protection’s approach to complex assessments of capacity.

Practical Impact

Practitioners, healthcare providers and commissioners should be mindful that:

• It is possible for P to have capacity to litigate Court proceedings, where he/she lacks capacity to make the decisions that are the subject of those proceedings.
• Assessments of capacity must not be influenced by the fact that P has/is making an unwise decision – the outcome of the decision is not relevant to whether the person has or lacks capacity.
• The degree to which an impairment/disturbance in the functioning of the mind or brain affects decision-making is relevant – it is not enough that a person’s ability to make decisions is impaired; the impairment/disturbance in the functioning of their mind or brain must render them unable to understand, or retain, or weigh in the balance the relevant information or communicate their decision.
• Here P’s decisions were “so infected and influenced” by her fixated beliefs that she lacked capacity to make decisions on whether or not to be tube fed.
• When assessing capacity, it is necessary to carefully consider the extent to which P is able to use and weigh the relevant information, and to carry out a proper balancing exercise. In this case, P’s anorexia nervosa (and compulsive desire not to gain weight) prevented her from accepting the necessity of food intake in order to prevent further deterioration and death. The Court pointed to P’s expressed desire to continue living and not to die as a clear manifestation of the extent to which her anorexia nervosa and associated overvalued ideas had impacted her capacity in relation to nasogastric feeding.
• This is the latest in a series of serious medical treatment decisions where the Court of Protection has emphasised P’s autonomy and given primacy to P’s wishes and feelings, in circumstances where adhering to P’s wishes and feelings involves a significant risk of death.
• Where there is agreement on best interests between P and relevant stakeholders with an interest in P’s care, it may be appropriate to make an application to the Court of Protection where a consequence of the agreed course would be withdrawal or non-provision of clinically assisted nutrition and hydration / life-sustaining treatment.

For further information about this case, please contact Melanie Lothbrok.

You can read the full case summary below.

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

Relevant Topics

• Serious medical treatment
• Capacity
• Mental Capacity Act 2005

Summary

An application was brought by the Trust to the Court of Protection for declarations that AB lacked capacity to make decisions about treatment for anorexia nervosa and that it was in AB’s best interests not to receive any further active treatment for anorexia nervosa.

Mrs Justice Roberts concluded that AB lacked capacity to make decisions regarding treatment for anorexia nervosa, specifically nasogastric feeding, on grounds that her anorexia nervosa (and compulsive desire to avoid weight gain at all costs) prevented her from using, weighing and balancing the relevant information. It was considered that her anorexia nervosa impaired her ability to accept any treatment which would allow her to avoid death by starvation or associated causes, in the context that AB wished not to die and to continue living.

However, Mrs Justice Roberts concluded that despite the potentially life-threatening consequences of further weight loss, it was not in AB’s best interests to receive nasogastric feeding against her will or under sedation. It was accepted that this would be distressing and traumatic for AB, and would likely be futile and precipitate her death in any event. The Trust’s proposed palliative care plan was endorsed.

Background

This application concerns AB, a 28-year-old woman with a long standing history of chronic and severe anorexia nervosa. AB had had 11 previous hospital admissions including the use of restraint and forcible nasogastric feeding, which she were a source of significant trauma for her.   Due to AB’s extremely low weight and fragility, she was at serious risk of death. AB accepted and understood that her life was at risk and expressed the desire to continue to live and not to die.

Due to AB’s advanced state of deterioration, forcible nasogastric feeding would be the only treatment option available for her. However, it was agreed by AB, AB’s treating clinicians and AB’s family that nasogastric feeding against her will using physical restraint or chemical sedation would not be in AB’s best interests, and would be physically and psychologically traumatic for her.

The Trust brought an application for declarations that AB lacked capacity to make decisions about treatment for anorexia nervosa and that it was in AB’s best interests not to receive any further active treatment for anorexia nervosa (namely nasogastric feeding).

The Trust gave evidence that a further hospital admission would be required for nasogastric feeding, but this was not likely to be successful unless AB was prepared to engage. AB had been unable to demonstrate any weight gain over the past years. The Trust considered that there was no prospect of AB recovering from anorexia nervosa and the focus should now be on giving her the best quality of life in the community, with the support of her close and loving family, and regular outpatient input. A palliative care and support plan was proposed by the Trust.

The Trust considered that AB had litigation capacity and capacity to make day to day decisions. However, the Trust considered that AB lacked capacity to make decisions concerning treatment options for anorexia nervosa. It was accepted that she understood the risks and consequences of what would happen if she continued to lose weight. However, it was submitted that AB’s anorexia nervosa and desire to avoid weight gain at all costs prevented her from using and weighing the relevant information – namely the importance of food intake to sustain her life.

Key Findings

• When assessing capacity, it is necessary to carefully consider the extent to which P is able to use and weigh the relevant information, and to carry out a proper balancing exercise. In this case, P’s anorexia nervosa (and compulsive desire not to gain weight) prevented her from accepting the necessity of eating and putting on weight in order to prevent further deterioration and death. The Court pointed to P’s expressed desire to continue living and not to die as a clear manifestation of the extent to which her anorexia nervosa and associated overvalued ideas had impaired her capacity in relation to nasogastric feeding.
• Submissions were made on behalf of AB that a compulsive desire to avoid weight gain had not been cited as a reason for her refusal of nasogastric feeding – and that this therefore could not be the cause of her lack of capacity. Other reasons had been cited by AB, such as the effect of her past experiences, the risks and futility of nasogastric feeding, and the desire to be at home. The Court did not accept this submission and found that AB’s decisions in respect of treatment for anorexia nervosa were so influenced by a compulsive need to avoid weight gain at all costs that the true logical reasoning behind these specific matters was beyond her capacity or ability.
• The Court emphasised that the declarations in respect of AB’s capacity should enable her to make autonomous decisions about care as her illness progresses. It was highlighted that, in the event of a future emergency admission, her lack of capacity to make an Advance Decision about nasogastric feeding should not result in nasogastric feeding being imposed on her by a different hospital or NHS Trust. Due care should therefore be taken by the Applicant in drafting such declarations.