The right to autonomy

Rosalind English reviews a recent Court of Protection case where an NHS trust sought declarations in relation to a young woman with anorexia nervosa and an alcohol dependence syndrome.

The issues that arose before the Court of Protection in A NHS Foundation Trust v Ms X (By her litigation friend, the Official Solicitor), 8 October 2014  [2014] EWCOP 35 encapsulate the difficulties involved in applying legal tools to the organic swamp of human pathology. Everything that one may envisage, for example, in planning a “living will” (or, more precisely, an Advance Decision under the Mental Capacity Act), may have no application at the critical time because the human body – or rather the way it falls apart – does not fit in to neat legal categories. In such a situation it is often the right to autonomy that is most at risk, since what you plan for your own medical and physiological future may not square with what the authorities you decide you were capable of planning. Cobb J’s sensitive and humane judgement in this sad case is a very encouraging sign that courts are beginning to resist the tyrannous claims of Article 2 and the obligation to preserve life at all costs.

Factual and legal background

Ms X, a young woman who lives alone in a private rented bed-sit, has suffered from anorexia nervosa for the last 14 years. She also suffers an alcohol dependence syndrome which has caused chronic and, by the time of this hearing, “end-stage” and irreversible liver disease, cirrhosis; this followed many years of abuse of alcohol. The combination of anorexia nervosa and alcohol dependence syndrome is unusual, and has always been medically acutely difficult to manage. This is a vicious cycle of self destructiveness and treatment, and as Cobb J observed,

"The causes of her distress are multi-factorial but include the treatment for her anorexia itself and the removal of her personal autonomy when treated."

So damaging had been the previous admissions for compulsory feeding, her doctors regarded it as “clinically inappropriate, counter-productive and increasingly unethical” to cause her to be readmitted; their experience revealed that on each recent admission, she had been more and more unwell (as a result of her anxiety to reverse the weight gained in hospital during the previous visit, combined with renewed alcohol abuse). In fact Ms X had been on an ‘end of life pathway’ twice in recent months and it was said that her physical condition “is now so fragile that her life is in imminent danger.”

Talking therapies, standard treatment for anorexia, had not worked at all in her case. According to one of the experts submitting evidence in this case, Ms X "has repeatedly proved unable or unwilling to engage in such treatment and continues to express the view that she will not engage in 'talking treatment'. No one can be coerced into psychotherapy and so this avenue is closed and most likely the time for such treatment has long since passed."

Therefore it was the opinion of the professionals involved in her treatment that compulsory feeding would be pointless in terms of achieving long-term treatment, and would be likely in their view to intensify her consumption of alcohol on discharge from hospital, thereby actually increasing her mortality. The one good prognostic indicator for recovery from liver disease is good nutrition. Medical opinion was that if Ms X maintained her “very poor levels of nutrition, she would not be giving her liver the best chance to recover”. But every spell in hospital meant a return to binge drinking and worsening of her liver disease when she was released.

It was for this reason that the NHS Trust applied to the COP in August 2014 for declarations that:

1. It was not in Ms X’s best interests to be subject to further compulsory detention and treatment of her anorexia nervosa, whether under the Mental Health Act 1983 or otherwise, notwithstanding that such treatment may prolong her life.
2. It would be in her best interests, and therefore lawful, for her treating clinicians not to provide Ms X with nutrition and hydration with which she does not comply.

As Cobb J pointed out, by seeking these declarations the doctors were not asking for authorisation to withhold treatment.

"Treatment remains on offer for Ms X should she wish to avail herself of it; the doctors hope that she will. This case, tragic in so many ways, is about the lawfulness of not compelling treatment."

Neither Ms X nor the Official solicitor opposed this application. Nevertheless it remained for the judge to determine whether he could and should exercise jurisdiction in relation to Ms. X, and to make orders which protect and advance her best interests.

The Court’s decision

Having considered the expert evidence with regard to Ms X’s failure to understand the dangers she was posing to herself – because she was so disturbed by her fear of weight gain – the judge concluded that she lacked capacity to litigate and make decisions about her eating disorder. On the other hand, the medical and psychological experts were both of the view that she did have capacity to make decisions about alcohol and Cobb J was minded to accept that position. It followed that his jurisdiction was limited to making best interests decisions only in relation to the treatment of anorexia nervosa and not in relation to the management or treatment of her alcohol dependence disorder.

Ms X had made an Advance Decision under Section 24 of the Mental Capacity Act 2005 that she was not to be admitted to hospital under a range of circumstances including being found unconscious or vomiting blood, nor was she to be subjected to cardiopulmonary resuscitation. In the judge’s view, this Advance Decision was entitled to the “fullest respect”, in the spirit of Lord Goff’s approach in Airedale NHS Trust v. Bland [1993] AC 789:

"…the principle of self-determination requires that respect must be given to the wishes of the patient, so that if an adult patient of sound mind refuses, however unreasonably, to consent to treatment or care by which his life would or might be prolonged, the doctors responsible for his care must give effect to his wishes, even though they do not consider it to be in his best interests to do so." [page 864]

That might have been the end of the story. But the complication was that whereas she had capacity with regard to her liver disease, she did not in relation to her eating disorder, and any medical condition warranting treatment might be a result of the two syndromes inextricably entangled. Were any number of medical catastrophes to strike her, it would be “extremely difficult” to establish which of her physical presentation was related to her liver disease and which to her malnutrition “potentially leading to an inadvertent contravention of her capacitous wishes around the treatment of her liver disease in the process”.

The only option that presented itself was by way of long term in patient treatment, perhaps running in to years, which would have the associated advantage that Ms X would have reduced access to alcohol. But this would be a form of enforced detention that could not be justified since the invasion of autonomy by forced re-feeding is only legitimised by the benefit of talking therapies. The prospects of her accepting the latter was, in her doctors’ view, “vanishingly low”.

"Such a hospital admission would impose a considerable restriction on Ms X’s liberty, interference with her Article 8 ECHR rights, and reduce her quality of life considerably – removing her from the society of the people she holds dear (her friend Ms Y, and her grandfather in particular) to reside in a specialist clinical hospital setting."

It was clear to the Court from the medical evidence that any re-feeding treatment would not now, as it never has, address the cause of the anorexia; it would merely serve to prolong life. One of her doctors said that: "… bringing her back for treatment keeps her alive but does not treat her; every time we bring her in we distress her, and this then increases her alcohol use; this will shorten her life by increasing her liver disease."

In fact the problem goes further than that. Cobb J acknowledged the possibility that Ms X was not apparently choosing to seek help for the palliation of her physical symptoms of her liver disease “due to concerns that these be taken as further signs of malnutrition, and so result in her detention in hospital”. If left alone, she may take better measures to deal with her alcoholism.

The court’s obligations under the right to life according to Article 2 have to be weighed against the considerable interference with Articles 3 and 8 should referring be forced on her:

"Articles 3 and 8 of the ECHR are particularly prominently engaged; repeated forcible feeding over a long period of time against her clearly expressed wishes, most especially with the use of physical restraint, is likely in my judgment to amount to inhuman or degrading treatment, certainly it would amount to a severe interference with her private life and personal autonomy."

Despite this sorry story we should take heart from this enlightened judgment, upholding the freedom of the individual even though society conventions, be they religious or merely cultural in origin, may militate against such an approach. Cobb J concludes:

"So far as I can do so, I have endeavoured to put myself in the place of Ms X, and guided by what she has directly told me and others, I have considered what her attitude to the treatment is or would be likely to be. Having fully reviewed the circumstances of this case, and for the reasons discussed above, I have reached the clear conclusion that I should not compel treatment for Ms X’s anorexia."

Rosalind English is an academic consultant at 1 Crown Office Row and co-edits the set’s UK Human Rights Blog, where this article first appeared. She can be contacted This email address is being protected from spambots. You need JavaScript enabled to view it..