Friday, 15 April 2016

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?

11 comments:

  1. Also Re L; The NHS Trust v L (2012) EWHC 2741 (COP), (2012) MHLO 159. Thank you masked AMHP for this very sensitive post and I'm glad you raise concerns about stopping treatment. (I write as someone who comes under the severe and enduring' anorexic category myself, though of course I feel too fat to warrant that label).

    Do you think sometimes these decisions risk becoming about the clinicians or trusts' frustrations about treatment being ineffective? Surely we can't ignore the fact that multiple and lengthy refeeding admissions for anorexics are very costly... Is it coincidental that more of these decisions are coming at a time of cuts? Neither the patient in this current case or Re L expressed a wish to die, and their resistance to treatment is a direct consequence of their mental disorder. I find these decisions very worrying, though even more worrying are those cases where clinicians are deciding similar without bothering to apply to the court of protection...

    Sorry this is a bit ranty and jumbled as I'm tired, just my tuppence worth!

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  2. Which was the case where treatment was enforced without the sanction of the Mental Health Act? I don't think that's accurate and would like to check.

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    1. The case of E. But probably used MHA after the CoP judgement.

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  3. Treatment in the case of E was not given without the use of the MHA to overcome objection to treatment for a mental disorder. The judgment describes in detail E's previous periods as a detained patient and her being removed from the MHA and episodes of enforced feeding ending. I gather that the involved professionals agreed to abide by the judgment and to give it effect by use of the MHA. This should have been made much clearer in the reported judgment. Alex Ruck Keane’s blog drew attention to an inadvertent disclosure that E was still alive (an accident perhaps but a helpful corrective to the rumour that E had died), so in view of her fragile physical health, it might be possible to infer that the MHA was indeed applied to support feeding. What would have happened if the professionals had not agreed to be bound by the Court's recommendation is an interesting question ... but the principle that only the MHA authorises treatment for mental disorder when there is objection was not violated or modified.

    The cases described in your blog are not random isolated incidents. They follow in series. To my mind, the clinical judgment exhibited in E's care were so appalling and so faulty, that the judgment being publicised probably means that clinicians involved in any high risk decision making in the treatment of anorexia probably now wish to go to Court precisely to disassociate themselves from this sorry episode and to have their 'workings out' marked by a Judge.

    In this case, E had anorexia which had not proved amenable to the treatment offered but the expert witness pointed out that this had been patchy, sporadic and came nowhere near exhausting the clinical options. At the time of the judgment, E, whose physical health condition was serious, but not dire, had been admitted to a general hospital so that the consequences and outcome of her self-starvation could be managed until the time of her death as what was termed 'palliative care'. Staff from the local authority were instrumental in challenging this, resulting in the case being presented to Court. Though he doesn’t preach about this, the judge's ruling makes clear his view of how clinically inappropriate the original decision was.

    The rationale for not enforcing treatment on X was her much more seriously compromised health condition. Her cirrhosis was effectively at the end stage. Her presentation only superficially resembled that of E. X's health was at a point were palliative approaches were merited. The rationale for not offering treatment was that this clinical intervention would not extend her life but rather mean that her last days were traumatic and undignified.

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  4. Cont: I recall some of the judge-baiting mid-market tabloids noting the different outcomes in these two cases as evidence as disarray and incoherence in the attitude of judges at the time of the second judgment. This was not the case but in my opinion a model illustration of the context and personal specific focus of best interest decision-making. One size doesn’t fit all.

    Jackson J, the judge in the case of W, specifically notes that many might find his judgment about discharge ‘counterintuitive’ but it clear that this is because of the view he has, based on the assessment and planning by the care team that, ‘If she is capable of making any progress, it will not be as an inpatient.’ This is not a decision where lack of treatment is envisaged as having an inevitable sequel of decline until death: ‘It should … be stressed that this is absolutely not a situation where necessary services are being withdrawn from W. No one is giving up on her …’. Further: ‘W and her family are understandably anxious that she will not be readmitted to the unit if she deteriorates. As to that, I stress that in approving the order I am only endorsing the Board's plan in relation to the circumstances as they now exist and for so long as they continue.’ A readmission is not being ruled out: this is not an endorsement of someone being allowed to starve themselves to death because of their impaired judgment, it seems to be an endorsement of a high risk treatment strategy.

    I would therefore respectfully disagree with your summary of the three cases, which might be taken as sort of implying, if it doesn’t state, that these cases are illustrations of unsound legal innovation and inconsistency! I agree fully that changes to the law are required.

    The reason these opinions are being given in the Court of Protection of course is because complex dilemmas in clinical judgment cannot be addressed by the much narrower remit of the Mental Health Review Tribunal and the Upper Tier Tribunal which really only get to consider continuing detention or discharge. There are still mental health professionals still who regard the Mental Capacity Act as a dangerous and outlandish novelty or perhaps as a potential threat to their authority (come on, catch up, it's been in effect since 2007!). Perhaps this is a jurisdiction that needs to be created. It’s a pity that no-one seems to have dared to suggest using the Law Commission’s review of the MCA and MHA (as far as it applies to the jurisdiction of the Deprivation of Liberty Safeguards at least) as occasion for a wider reconsideration.

    (Incidentally, another factor is that two of the cases considered involve patients in Wales. That proportion seems a little higher than the law of averages might suggest. Perhaps this is because eating disorder services in the Principality are weaker, perhaps it’s because Local Health Boards persist and are effective legal entities to which issues of clinical accountability can be addressed? Who can say?)

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    1. Thanks for your comments and clarifications.

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    2. One thing that is often not understood by the public/ press is that severe loss of weight/ low BMI ( i can't remember the actual threshold value) causes (permanent?) changes to the brain. The implication I took from this is the importance of treating people, against their express wishes, under the MH Act before the BMI gets too low.

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  5. I agree totally with Tee Bee. It is frightening how many so called professionals do not appear to understand this.

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  6. Thanks Lesley - I used to get a very good nurse who managed an eating disorder unit to teach on our AMHP course - otherwise most AMHPs (including me until then) are out of their depth.

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  7. I may have missed it, but is there any update on this patient E? Has she passed away?

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    1. The last I heard, she was still alive.

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