Legal News

Amy Constant discusses cases involving patients with anorexia and examines how the Court of Protection approaches the issues of mental capacity and best interests.

Under the Mental Health Act 1983 (MHA), patients with Anorexia Nervosa can be detained in hospital and treated for their condition without their consent.  A declaration on mental capacity or any involvement of the Court of Protection is not required to treat Anorexia without consent. However, an increasing number of Anorexia cases are now being brought before the COP in the later stages of the patient’s treatment.

The Court of Protection (COP) is a specialist court established by the Mental Capacity Act 2005 (MCA) to makes best interest decisions for those who lack the capacity to make certain decisions for themselves. Typically, the MHA supersedes the MCA as the legal authority for decisions made on behalf of hospital inpatients with mental health disorders. However, patients with ‘severe and enduring Anorexia Nervosa’ (“SEAN”) can engage both statutory frameworks.

While the COP usually lacks jurisdiction where the MHA applies, it can become involved if the forcible treatment under the MHA is ineffective. The COP cannot authorise forcible treatment (which falls under the MHA) but it can approve the withdrawal of such treatment, as the MHA does not authorise the withdrawal of life-saving medical treatment.

In recent years, NHS trusts have increasingly sought declarations and decisions from the COP. It is not difficult to imagine that a patient with SEAN is likely to lack the mental capacity to make decisions about their caloric intake. Persuading the COP to declare incapacity on nutritional decisions is generally straightforward. Following such a declaration, the Trust may seek a court decision that forcible nutrition is no longer in the patient's best interests. In some distressing cases, the COP might authorise the withdrawal of forcible treatment, potentially moving the patient to palliative care. This has led to the birth of the highly controversial term "terminal anorexia," which many experts advise against using.

A key issue is whether it is appropriate to act on a patient's expressed wish to refuse sufficient calories for survival. A strong principle of the MCA is that the patient’s wishes and feelings must be given appropriate weight even when they lack capacity on a subject. While a patient may lack the capacity to decide on their caloric needs, their views should not be overlooked. For instance, a patient may wish to survive but not to consume calories, in which case the court might override their wish to refuse food.

In the case of Re L (The NHS Trust v L & Others [2012] EWHC 2741 (COP)), the patient wished to discontinue life-saving treatment not just to avoid consuming calories but to end her prolonged suffering. In sad cases like Re L, the COP should ensure that the patient has had access to quality treatment for a number of years before the court considers authorising treatment withdrawal. However, In Re L, the patient had access to some of the most respected specialist clinicians and centres for over sixteen years, but the treatment was not working.

There are other cases brought before the COP where it is evident that not all treatment options have been exhausted. The phrase "terminal anorexia" is particularly dangerous as it suggests that patients labelled this way can be "given up on," or that SEAN should be treated as terminal when it is not. Anorexia, regardless of severity or duration, is not technically a terminal illness; it is not a degenerative neurological condition. There have been instances where patients, even after requiring intensive inpatient treatment for a decade or more, have made full recoveries.

Medical practitioners and activists, such as consultant psychiatrist Agnes Ayton and activist Hope Virgo, argue against the use of the term "terminal anorexia" and the withdrawal of treatment decisions. Hope Virgo, who has experienced severe anorexia and hospitalisation, emphasises that no patient should ever be "given up on." She shares instances, such as a recent patient who initially expressed a desire to the COP not to live but later changed their mind. Following the COP decision, the patient's parents had to re-mortgage their house as accessing NHS treatment became more difficult. Hope argues persuasively that patients should be forcibly treated to reach a higher BMI, as improved nutrition enables better brain function, before the court considers their views on withdrawing treatment. Malnutrition, after all, can impair one’s capacity to think clearly.

A counterargument is that COP decisions can be reversed if the patient's wishes or circumstances change, though this may be complicated in practice. Additionally, what might be perceived as "giving up" could be interpreted differently by the patient, their family, or clinicians. Some psychiatrists suggest that restoring control to the patient by respecting their wish to stop forcible treatment might positively impact their psychological state and aid in their recovery.

Another issue is that nasogastric (NG) feeding can be dangerous, particularly when the patient has a low BMI and accompanying comorbidities. Feeding under restraint or sedation carries significant risks in such cases.

A case which contrasts with Re L is Re E (Medical treatment: Anorexia) [2012] EWHC 1639 (COP). When an independent medico-legal expert examined the case, he found that the patient was on a diamorphine syringe pump without a clear rationale. E’s case was in the COP, with the Trust seeking a decision on whether treatment should be withdrawn; however, the expert found that she had not benefited from sustained, quality treatment. He expected to find that E had been provided with repeated and intense treatment, but this had not occurred. The COP, understandably, decided that treatment should not be withdrawn. Judge Peter Jackson concluded in Re E:

"We only live once – we are born once and we die once – and the difference between life and death is the biggest difference we know. E is a special person, whose life is of value. She does not see it that way now, but she may in the future. I would not overrule her wishes if further treatment was futile, but it is not. Although extremely burdensome to E, there is a possibility that it will succeed."

In Re L, the patient was so resistant to treatment that even forcible treatment was nearly impossible. She had access to some of the most respected treatment centers and practitioners in the country for over 13 years of inpatient treatment, and the COP decided to allow the withdrawal of her treatment. Mrs. Justice Eleanor King concluded that:

"Should L's condition further deteriorate such that, in the opinion of the treating clinicians, she has entered the terminal stage of her illness, provide L with palliative care and related treatment (including pain relief and anxiolytics) under medical supervision to ensure that L suffers the least distress and retains the greatest dignity until her life comes to an end."

This example, and others like it, does not necessarily support the use of the term "terminal anorexia" because such a definitive phrase does not seem appropriate, even here, for an illness where patients can recover even after reaching a point where that seemed impossible. A phrase like this slipping into common usage might encourage someone to be marked in such a way that their treating team is discouraged from trying absolutely everything they can. The decision to move an Anorexia patient to palliative care instead of treatment should be an exceptional one, which should be vanishingly rare.

If you require legal advice on a COP case in which a protected party is living with anorexia, please contact angelasa@duncanlewis.com. We can advise and represent the protected party via the Official Solicitor or their family members as interested parties.

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About the Author

Amy Constant is a Trainee Solicitor in the Court of Protection department, primarily specialising in mental capacity litigation. Amy has experience in cases involving the health, welfare and finances of those who lack capacity and often takes instructions from adults and young people with disabilities and physical and mental health difficulties. She also assist colleagues in public law cases concerning statutory appeals and education law.