Anorexia: Persist with Treatment or Allow to Die? Recent Case Law

(Post contains references to weight loss and BMI)

In the last few years there have been a couple of judgments from the Court of Protection relating to the treatment (or otherwise) of women with anorexia. There has now been a third.

Back in 2012 Mr Justice Peter Jackson considered the case of E. I wrote about this judgment here.

Briefly, E was a 32 year old woman suffering from Anorexia Nervosa, Emotionally Unstable Personality Disorder, and chronic alcohol dependence. She had a Body Mass Index of less than 12 (normal is 20-25). She was in a palliative care setting and was refusing to eat. She had a very long history of anorexia, and had had been subject to many treatment regimes over that time, with little or no success. She was at the point of death. The essential decision the Judge had to make was whether or not further life saving treatment against her will was in her best interests.

The Judge concluded: “The presumption in favour of the preservation of life is not displaced. I declare that E lacks capacity to make decisions about life-sustaining treatment, and that it is lawful and in her best interests for her to be fed, forcibly if necessary.”

This meant that she would continue to be treated, although at least initially under the Mental Capacity Act rather than the Mental Health Act, even though she had often been detained for treatment under the MHA in the past.

In 2014 there was the case of X, which I wrote about here. Her clinical team, far from requesting a decision to impose continuing treatment, were actually asking for declarations to permit them to cease treatment.

Ms.X had a 14 year history of severe anorexia nervosa, complicated by also having alcohol dependence syndrome which had caused chronic and irreversible cirrhosis of the liver. She had had many spells as an inpatient detained under the MHA when she had had forced refeeding. At the time of the judgment, she had a BMI of less than 13.

She seemed in many ways to have a similar presentation to E, but the Judge in her case reached a very different conclusion from the Judge in E’s case, stating that, although “the starting point is a strong presumption that it is in a person's best interests to stay alive … this is not absolute. There are cases where it will not be in a patient's best interests to receive life-sustaining treatment”.

He stated: “I have reached the clear conclusion that I should not compel treatment for Ms X's anorexia.”

Now there has been another Court of Protection judgment ([2016] EWCOP 13) which concerns W, a 28 year old woman with a 20 year history of anorexia nervosa. The Judge in the case of E, Mr Justice Peter Jackson, was again the Judge in this case.

He described her situation thus:

Since the age of 11, she has had six admissions for inpatient treatment, spread between five units around the country and amounting to about 10 years in total.  Her current admission has lasted for 2½ years and yet, despite the most intensive support, she is barely eating and is losing weight at the rate of 500 g – 1 kg per week.  She now weighs less than 30 kg and her BMI is 12.6.  If she continues to lose weight at this rate, she will die.

Despite this, the local health board (the case was in Wales) proposed that W “should now be discharged into the community with a closely thought-out package of support for her and her family. Given W’s fragile condition, it is a plan that has only been arrived at after the most anxious consideration by her care team. It will at first seem counter intuitive that someone so ill should be discharged from hospital. The conventional assumption is that hospital treatment is likely to bring benefits, but the evidence has persuaded me that in this case that is not so.”

The Judge considered a large amount of evidence from psychiatrists and others involved in her care, and also took full account of the views of W’s relatives, as well as speaking to W herself.

The Judge noted that the psychiatrist who offered professional advice to the court on the case “was guarded about any therapeutic intervention turning W’s situation around. At the moment she understands intellectually that her life is already in danger but she is not overly concerned at the prospect.  The history shows that W only eats when her situation deteriorates to such an extent that she actually believes that she might be in imminent danger of death.”

The Judge concluded that it “now has to be accepted that it is beyond the power of doctors or family members, and certainly beyond the power of the court, to bring about an improvement in W’s circumstances or an extension of her life.  The possibility that the withdrawal of inpatient mental health services will bring about a change for the better may not be very great, but in my judgment it is the least worst option from W’s point of view.”

To summarise these cases then: in one it was decided to enforce treatment outside of the Mental Health Act; in the second it was decided to cease all treatment and in effect permit the patient to die; and in the most recent, to cease inpatient treatment in the probably vain hope that the patient might see the error of her ways and start to put weight on again.

In most Court of Protection cases involving threats to the health of people lacking capacity, the issue tends to relate solely to physical interventions for physical problems. These quite often concern surgery to remove gangrenous limbs (there have been a remarkable number of CoP decisions relating to people with complications associated with diabetes, which I might consider in a separate post at some point), or where a pregnant woman lacking capacity needs a caesarean section or other intervention associated with childbirth.

But these three cases all involve people with severe mental illness, who need treatment in order to treat the consequences of their mental disorder. While this treatment may require medical interventions, they arise from mental disorder, and compulsory treatment is permitted by the Code of Practice under the Mental Health Act.

I remain uncomfortable with the concept of using the law, whether it be the Mental Health Act or the Mental Capacity Act, to permit the stopping of life saving treatment, but I also recognise that there may be occasions when diligent clinical teams reach a point at which they can no longer justify continuing treatment, especially when that treatment could be considered unjustifiably invasive and oppressive. I suppose it is then appropriate to ask to courts to adjudicate.

But I also remain uncomfortable with the fact that these three cases are all concerned with women with anorexia nervosa. Having worked with people with anorexia (men as well as women), I know how frustrating it can be to attempt to treat them and effect change in their behaviour. I also know how difficult it can be to establish a balance between the need to provide treatment and the need to respect the human rights of the individual.

Maybe there are times when the right of someone with a severe mental disorder to refuse treatment, even if the consequence is that they will die, must be respected.

Or do these cases say more about the ineffectiveness of current treatments for anorexia?