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?

Sinking into a Legal Quagmire

I was on AMHP duty recently when I received a request for an urgent assessment under the Mental Health Act. It had come from the local criminal justice liaison nurse, who was ringing from the patient’s flat.

This in itself was very unusual. Criminal justice liaison nurses usually only assess people who are in police custody or in court.

The circumstances were as follows. Every year, the local housing association has to make a gas safety check of all their properties. One particular tenant, a man in his late 60’s who lived in a ground floor flat, had ignored all their letters and calls, and was refusing entry.

Eventually the housing association had obtained a warrant from a magistrate to enter the premises in order to check the gas supply. Two officials from the housing association had then attended the man’s flat with police officers, a locksmith and a gas engineer.

Despite the police attempting to gain entry without force, the tenant refused to open the door. At this point, the locksmith was employed to drill the lock and entry was then obtained. The tenant objected strenuously to what was happening, and the police, noticing a knife on a table near to the tenant, and fearing an incident, had then restrained and handcuffed him.

The behaviour of the person, and the condition of the property, gave the police cause to believe that he might be mentally disordered, and they then asked the liaison nurse to assess, which he did. As he thought that the person was acutely psychotic, and needed to be assessed with a view to admission to hospital for assessment, he contacted me.

There was indeed a degree of urgency. There were four police at the flat, the man was being held in handcuffs, and something needed to be done as soon as possible to resolve the situation one way or another.

I managed to obtain some background information on the patient from case records before I took any further action.

He was called Alfred and was 69 years old. He was a highly educated man, who had graduated with a first in English from Cambridge University in the 1960’s, and had gone on to teach English literature in a private school for a number of years.

Sometime in the 1980’s he had been admitted to psychiatric hospital under Sec.2 and had remained in hospital under Sec.3 MHA for several months. He had received a diagnosis of paranoid schizophrenia.

He never returned to work, and indeed disappeared from view for over a decade, when he was found by police sleeping rough, and was detained under Sec.136. He had again ended up in hospital under Sec.3, and was discharged to the housing association flat in around 2000, at which point he was receiving a regular antipsychotic depot injection. The records showed that after about 5 years it was decided to reduce and then withdraw the depot, and he was eventually discharged from Sec.117 aftercare and from secondary mental health services.

So although he had a long history of psychiatric disorder, he had not had any involvement with mental health services for nearly 10 years.

I quickly managed to obtain two Sec.12 doctors and within two hours of receiving the call we were all at the flat.

We were told by the housing association staff and the police that Alfred had been expressing extreme racist views about both the police and the housing association staff. He had used a range of racially abusive epithets, which was in itself slightly odd, as all the police and the staff were white British, as was Alfred.

We were told that Alfred appeared to be paranoid about infiltration and contamination. He had screwed closed the gas meter box, had sealed all the ventilation ducts in the flat, and had placed wooden shutters over the inside of the windows.

We went into the hallway of the flat. The flat itself was crammed with cardboard boxes. The living room was lined to the ceiling with bulging cardboard boxes, leaving little room for the dilapidated armchair and a coffee table. The bedroom was so full of boxes that there was only room for his single bed.

One of the police ushered me into his kitchen.

“Look at this,” he said, kneeling down and shining his torch through the glass door of Alfred’s washing machine. The washing machine was half full of water. Floating in the water were several large, dead fish. They looked like mackerel, or possibly herring. This added to the overall sense of unreality.

Alfred himself was sitting on the bed. He was in handcuffs, and a police officer was crouching in front of him clutching the handcuffs to prevent him from struggling. There was not enough room for the doctors and I to enter the bedroom, and we therefore had to attempt to interview him from the hallway.

It all felt very unsatisfactory. I was not sure this constituted assessing “in a suitable manner”. I did not feel in control of the situation.

Alfred unsurprisingly did not cooperate with the assessment. He harangued and swore at us, accusing us of being part of a conspiracy by the Muslims to convert him to Islam so that he could be used as a suicide bomber. He did not believe we were police, or doctors, or an AMHP. Instead, he appeared to be convinced that we were spies, intent on stealing his home and shipping him off to Syria through extraordinary rendition.

He was not making much sense.

The doctors and I, despite our disquiet at the circumstances of the assessment, concluded that Alfred had had a relapse of his paranoid schizophrenia, and was acutely unwell, and that he needed to be admitted to hospital for assessment of his mental state. The doctors gave me a joint medical recommendation for Sec.2 MHA.

At that point, things started to get worse.

In an ideal world, I would have completed an application for detention under Sec.2, the police would have accompanied Alfred to hospital, and Alfred’s flat could have been made secure.

But we are not in an ideal world, dear reader.

I rang the bed manager, who told me that there were no beds anywhere in the Trust. They would look elsewhere in the country, but it was going to take time, and it would probably be in a private hospital. And they would require me to fax through to them a full risk assessment, because private hospitals would not consider anyone without a full risk assessment. The bed managers appeared to be oblivious to the difficult and untenable situation, and the pressing need in the circumstances for the patient to be taken to a hospital.

I explained this to the police. They said they would stay there for now, but they were obviously unhappy that the patient was in handcuffs. But then they had taken that action in the first place, and had then called me.

So I went back to the AMHP office to write a risk assessment.

And had some space to think about the full implications of the whole thing.

And started to worry.

In the heat of the moment, and at the behest of the police and the forensic liaison nurse, I had gone out to assess someone in their own home without fully considering the legal status of the request.

The warrant the housing association had obtained was under Sec.2 of the Environmental Protection Act 1990. This is specifically for the purpose of servicing or maintaining a gas appliance. Did that give me the power to enter his flat in order to assess him under the Mental Health Act, even at the request of the police? I wasn’t at all sure that it did.

And now I had assessed him, I was powerless to make it even a little bit legal by completing an application and therefore making him “liable to be detained”. This would have then given the police, or an ambulance crew, the power to convey him to a hospital.

In the meantime, Alfred couldn’t be detained under Sec.136 and taken to the Sec.136 suite until a bed was available for two reasons: firstly, he was not in “a place to which the public have access”, as he was most definitely in his own home; and secondly, as the purpose of detention under Sec.136 is for a patient to be assessed for possible detention under the MHA, since he had already been assessed, it would be an abuse of the Act.

He couldn’t be arrested, and then taken to a place of safety, as according to the police, he had not actually committed an offence.

So currently there were no legal powers for the police to keep Alfred in handcuffs, or indeed to remain in his property without his consent.

I rang the duty sergeant and discussed this with her. Since there was no immediate prospect of a bed being available, enabling me to complete an application for his detention, I advised that the police would have no option but to leave Alfred’s flat immediately.

The following day, I was notified that a bed was available. The good news was that it was in a local hospital. It meant that I could complete my Sec.2 application form and render Alfred at last “liable to be detained”.

However, since it was extremely unlikely that Alfred would permit anyone to enter his flat in order to take him to hospital, I would have to obtain a warrant under Sec.135(2), giving the police the power to enter his flat in order to “take or retake” a patient liable to be detained under the MHA.

But at least that would be legal.