Julian Sheather: Autonomy and the anorexic patient

There was extensive media comment this weekend about the Court of Protection’s decision to authorise the force-feeding of a seriously anorexic former medical student with a critically low BMI. The woman, referred to only as “E,” is 32 and following sustained sexual abuse as a child has suffered from an eating disorder since she was 11. Without urgent medical treatment, including involuntary feeding, she will die. She has had four episodes of treatment in specialist eating disorder units and one in an alcohol treatment unit. With great reluctance, E, her parents, and the professionals involved in her care came to the conclusion that all available treatment options had been exhausted. She was transferred to a community hospital for palliative care and put on an “end of life” care pathway. After five weeks on the pathway, her Local Authority bought her case to the Court of Protection concerned that it needed further investigation.

I blogged here recently about a young Jehovah’s Witness whose refusal of a blood transfusion was accepted and who died as a result. They are both young adults, neither wanted explicitly to die, but one’s refusal was accepted, the other not. What is it that distinguishes them?

The short answer is decision-making capacity. The Court of Protection has jurisdiction in cases heard under the Mental Capacity Act (2005) for England and Wales (MCA). Although E had been treated several times under mental health legislation, and the option remained open to use its compulsory powers, the role of the Court of Protection in this case was first of all to assess whether she had the capacity to refuse treatment. If she did the Court had no jurisdiction and in the face of a competent refusal, treatment could only be provided under mental health legislation.

Although all adults are presumed to have the capacity to make decisions on their own behalf, the presumption is, to use the legalese, rebuttable: on the basis of reasonable evidence it can be set to one side. The MCA sets out a number of criteria that need to be met before it can be decided that an adult lacks capacity. Critical to the distinction between the two cases here is the “diagnostic criterion.” An adult can only be assessed as lacking capacity under the MCA if he or she is suffering from “an impairment of, or a disturbance in the functioning of, the mind or brain.” Although the health professionals struggled with the decision by the young Jehovah’s Witness, in the absence of such an impairment or disturbance a person cannot be assessed as lacking capacity. That someone makes a decision that many others would consider unwise, irrational, or just plain wrongheaded does not mean that he lacks capacity. The legislation does not concern itself with the quality of the decision but the capacities required to make it. In the case of “E,” anorexia was the relevant disturbance.

Having identified the impairment or disturbance the court then had to identify whether it was sufficient to undermine her capacity. “For E,” the court held, “the compulsion to prevent calories entering her system has become the card that trumps all others.” Anorexia had effectively rendered her incapable of “using or weighing” relevant information in making a decision about treatment.

So the distinction between the two individuals turns on their capacity. But this is only really the beginning of E’s story. The law regarding the treatment of patients suffering from severe anorexia is reasonably well established. Having assessed E as lacking capacity, the Court then had to make a decision about what course of action was in her best interests. And here the real difficulties begin. E is clearly an intelligent woman. She has been through many years of treatment. While in the court’s view her refusal of food lacks capacity, it is long-established, and highly resistant to treatment. The only possibility is therefore forcibly to feed her, an experience that leads her each time, she has said, to relive her abuse. The outcome of the treatment is uncertain. Medical opinion has given the chances of her surviving or not surviving the treatment as about equal. An eating disorder specialist put the likelihood of recovery as somewhere between 10 and 20 per cent. And so the Court was required to balance the considerable burdens of treatment, the certainty of her refusal and the uncertainty of the outcome against the inevitability of her death. The Judge admitted that for the first time in his experience the case raised “the real possibility of life sustaining treatment not being in the interests of a person who…is fully aware of her situation.” Although he regarded the advantages and disadvantages as “almost exactly in equilibrium,” in the end he came down in favour of the preservation of life. It is not easy to imagine a more difficult decision.

There has been some mention of the right to die in relation to E’s case, but I am unsure how helpful it is. It makes no sense to talk about autonomy rights in relation to a decision by someone who lacks the capacity to make it—the conditions for autonomy are simply not met. There are of course those who will say that the court’s assessment of E’s capacity is faulty, that the desire to save her life pushed the bar too high. I have also heard it said that a refusal to respect such a decision discriminates unfairly against the mentally disordered. And it is true that if she was assessed as having capacity she could have been compulsorily treated under mental health legislation. But we move here into very difficult territory. To be autonomous is to act in some way on the basis of reasons, values, or desires that one recognises as one’s own. I am no expert here, but in my understanding people suffering from anorexia do not seek death, but control in the face of enormous emotional confusion. The tragedy of anorexia is that the sufferer loses control of the control. Can it really be said that a decision made in the grips of an overmastering compulsion, a decision that will inevitably lead to death, can satisfy the grounds for an autonomous decision? People suffering from anorexia can and do recover. According to a thoughtful piece by Kate Hilpern in The Guardian, those who do recover say that it was only possible because “someone else took control and made decisions for them.”

The respect for autonomy has become something of a shibboleth in medical ethics. But it seems to me to be one thing to respect a decision based upon lifelong religious belief, quite another to defer to a decision made in the maelstrom of a profound and life-destroying mental illness.

Julian Sheather is ethics manager, BMA. The views he expresses in his blog posts are entirely his own.