A NHS Foundation Trust v Ms X (By Her Litigation Friend, the Official Solicitor)

Ms X is a young woman; she lives alone in a private rented bed-sit. She is suffering from an enduring and severe form of the eating disorder, anorexia nervosa; this condition has, it appears, dominated her life for the last 14 years. Ms X also suffers an alcohol dependence syndrome (psychological dependence on alcohol) which has caused chronic and now "<I>end-stage</I>" and irreversible liver disease, cirrhosis; this follows many years of abuse of alcohol. The combination of anorexia nervosa and alcohol dependence syndrome is unusual, and has been (and continues to be) medically acutely difficult to manage.

For many years Ms X has been trapped in an increasingly destructive revolving door of treatment and recurrent illness. She has required repeated specialist in-patient hospital admissions, when she has been force-fed in an attempt to arrest and reverse the effects of her anorexia; these admissions have brought about only short-term benefits given that, when discharged into the community, she has invariably sought refuge in alcohol on which she has binged increasingly excessively to blunt her distress. 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, superimposed upon a background of harmful childhood experiences. Furthermore, when free to make choices, she consciously acts to undo the weight gains achieved in hospital, to the point that her weight falls to a critical level and re-admission to hospital for re-feeding treatment becomes once again necessary. Thus the increasingly predictable and immensely damaging cycle repeats, as it has many times over recent years.

Ms X is currently in extremely poor health. She is extraordinarily malnourished, with a body mass index ("BMI") assessed to be in the region of 12.3-12.6 kg/m². She is continuing to consume alcohol to excess; although she does so covertly, it is believed that her consumption is in the region of half a bottle (375mls) of vodka per day, sometimes more. Her current weight and BMI would, in ordinary circumstances, now provoke a further admission to a hospital unit specialising in eating disorders for treatment. The doctors who have treated her in recent years however regard it as "<I>clinically inappropriate, counter-productive and increasingly unethical</I>" (Dr. A – see below) to cause her to be admitted for compulsory feeding; their experience reveals that on each recent admission, she has been more and more unwell (as a result of her intervening bingeing on alcohol), and they confidently predict that she will be yet more poorly and fragile now than on previous admissions. Ms X has been on an 'end of life pathway' twice in recent months; indeed, it is said that her physical condition is now so fragile that her life is in imminent danger.

The purpose of re-feeding an anorexic patient is to keep that patient alive whilst psychotherapy, talking therapies, can be facilitated in an endeavour to investigate and treat the underlying anorexia; this has been shown over many years not to work for Ms X. So it is that the medical professionals firmly believe that not only would in-patient treatment once again involve painful, invasive and wholly unwelcome procedures for Ms X, but it 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, and accelerating her demise. As it is, the doctors opine that her life expectancy is measured in months.

It is against that background, summarised above and more fully discussed below, that application was made on 29 August 2014 by the A NHS Foundation Trust ("the Trust") for declarations that:

Those declarations are sought in the context of the Trust's contention that Ms X lacks capacity to make a decision as to whether it would be in her best interests to receive treatment for her anorexia.

I emphasise that the doctors do not seek 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.

The only respondent to the application is Ms X herself. She has made known her views (which I have set out below [48]-[51]); in short, she supports the application. Given the expert assessment of incapacity to litigate, she has been represented in the proceedings by her litigation friend, the Official Solicitor, who, having heard and tested the evidence, now does not oppose the application sought.

The absence of real opposition to the grant of relief sought by the Trust does not relieve me of the onerous obligation to satisfy myself that I can and should exercise jurisdiction in relation to Ms. X, and to make orders which protect and advance her best interests.

For the purposes of determining this case, I received written and oral evidence from:

The hearing of oral evidence occupied one full day of court time. I took the opportunity overnight to reflect on the material before delivering my decision and an abbreviated form of this judgment. The particular tragedy of the case is that there is a possibility even now that Ms X could live a long and happy life, but that chance is very small indeed – less than 5%. Moreover, I am satisfied that she does not want to die.

The outline sketch of Ms X's early life contained in the evidence before me reveals a range of harmful childhood experiences which she suffered while in the care of her parents; she has spoken to professionals and others (although not in detail) of these experiences. It is unnecessary, and I believe unhelpful to Ms X, for me to elaborate further on this aspect of her life here. Her narrative accounts of the highly disordered relationship with her parents is corroborated not just by the descriptions of Ms X's terror (Ms Y described her as 'hysterical') when she has more recently encountered her father, but more significantly – it is thought – by the development of her current illnesses, and her deeply engrained and highly injurious self-harming behaviours. There is little doubt in my mind, as in the minds of the experts, that the traumas of her childhood have left deep wounds which continue to manifest themselves through her psychological disturbance.

Ms X first displayed symptoms of anorexia nervosa some 14 years ago. In October 2003 she was referred to secondary services for treatment by her GP, though was prevented from attending by her mother. In the years since then, she has had over 45 admissions to hospital, sometimes for many weeks or even months at a time; she has received treatment (under the provisions of the <I>Mental Health Act 1983</I>) at some of the most specialised eating disorder units in the country. She has spent most of the last two years, and five of the first six months of 2014, in hospital.

Dr. A describes Ms X thus:

Significantly throughout the last fourteen years she has barely engaged in any psychological counselling (Dr. Glover thought that of the 25,000 pages of notes less than 20 contained records of any talking therapies). Her opposition to such intervention appears to be entrenched, and long-standing. Ms X told Dr Glover:

He added in oral evidence that Ms X:

Her friend, Ms Y, told me that there is "<I>not a glimmer of hope</I>" that she would find the strength or will to open up in therapy.

As indicated above, Ms X has suffered from anorexia nervosa for 14 years; it is of a high severity and the symptoms include a morbid fear of being fat, body dysmorphism and an absolute fear of weight gain. For some considerable time, Ms X has engaged in weight reducing behaviours mainly through restricting her dietary intake, regular vomiting and purging. This has inevitably caused physical and metabolic complications due to severe starvation; her strong anorexic drive has made it difficult to engage her therapeutically. More than once her BMI has fallen as low as 11.8kg/m².

Dr. Glover is of the view that the roots of Ms X's emotional and psychological disturbance lie buried within her traumatic childhood. He believes that starvation numbs her emotions, and re-feeding arouses them. During periods of re-feeding (and afterwards) Ms X finds her emotional state increasingly unbearable and seeks solace in alcoholic anaesthesia.

The <I>Mental Health Act 1983</I> has been deployed by the Trust on multiple occasions in the past to authorise compulsory treatment of Ms X for her "<I>mental disorder</I>" (anorexia nervosa is considered to be per <I>section 1(</I>2<I>)</I> a <I>"disorder or disability of the mind</I>"). However her treatment for alcohol-related complications has usually only been achieved in response to situations of acute (sometimes life-threatening) crisis, the <I>Mental Health Act 1983</I> offering no mechanism for in-patient treatment in this regard (note that "<I>[d]ependence on alcohol or drugs is not considered to be a disorder of the mind for the purposes of subsection 2 above"</I>: <I>section 1(3)</I>).

While nutrition is important to address the starvation in one who suffers anorexia (thereby ensuring physical and medical stability), the experts strongly opine that the only effective long-term treatment for anorexia is psychotherapy, to which (if it were to be effective) Ms X would need to make an urgent, firm and enduring commitment. In the course of such talking therapies, she would, I am advised, need first to resource coping and life skills, and engage with focused work on attachment, compassion and emotion tolerance. In the course of this, she would need to devise strategies for daily life experiences which divert her away from her eating disorder, alcohol, or indeed more drastic forms of self-harm. Once this first stage is complete, she could then progress to specific therapies to address her underlying experiences and traumas; this would then be followed by "<I>life after chronic illness development work</I>" (Dr. A). For many years, Ms X has used her eating disorder and alcohol as props to enable her to function; they now are not just props, but represent the very essence of her life. It is apparent to me that lengthy and psychologically challenging work would be required to displace them. The difficulty of this work for a patient with such engrained behaviours, and the personal strength required to complete it, cannot be under-estimated.

Periods of 'medical rescue' (i.e. in-patient treatment and re-feeding) do not address the underlying causes of her anorexia, though they have kept Ms X alive and less medically at risk, so providing a window of opportunity for her to engage in therapy. However, history reveals in this case that treatment for her eating disorder causes her to increase her alcohol consumption, thereby raising the risk of an accelerated death from liver failure.

Ms X started drinking as a young teenager, and has abused alcohol (and been alcohol dependent) for most of the last nine years. Inevitably, Ms X's abuse of alcohol has taken a considerable toll on her; nearly six years ago, she was admitted to hospital with acute renal failure and liver failure relating to alcohol consumption. In the following year she again suffered liver failure which became multi-organ failure, and caused her to descend into a coma. Two years later again she developed severe liver failure with ascites, jaundice, abnormal clotting of blood, encephalopathy and a variceal haemorrhage. Dr. B has advised that as a consequence of her heavy alcohol intake: "<I>she has developed cirrhosis of the liver (permanent irreversible liver damage)</I>" and that this: "<I>is likely to cause her death</I>". He says that she has previously developed several complications of the liver disease, although none is said on their own to have been life-threatening, including:

Although Ms X has inflicted enormous damage to her liver, Dr B clarified (in a note prepared for the parties in response to specific questions posed jointly by the Official Solicitor and the Trust), that Ms X's liver disease has not progressed past the point of no return; there is potential for recovery such that if she stopped drinking and resumed a proper diet, she might have "<I>a near normal life expectation</I>". Each admission to hospital for treatment of her malnutrition has imposed periods of abstinence, with which there has been associated a level of recovery of liver function; however with each admission over the last year, this level of recovery has been achieved to a lower level. She is now at a higher risk of liver cancer and is likely to have a slightly reduced life expectation from this alone. The chances of her surviving are said to be "<I>significantly and adversely affected</I>" by a combination of two significant factors, in Dr. B's opinion:

Dr B further gloomily opined:

I determine Ms X's capacity to participate in the litigation and make decisions in relation to the subject matter in issue (i.e. the treatment decisions in relation to anorexia) in accordance with the established principles set out in <I>section 1</I> of the <I>Mental Capacity Act 2005</I>. I approach the issue from the proposition that Ms X "<I>must be assumed to have capacity unless it is established that [she] lacks capacity</I>".

In this respect, I heard evidence from Dr. A and Dr. Glover. Dr. A (who has regular experience of assessing capacity decisions around nutritional treatment) has been Ms X's clinician for most of the last five years, and has first-hand knowledge of Ms X's symptom-based experiences; she has performed repeated assessments of Ms X in relation to the same, and for the purposes of her report to the court has conducted a detailed assessment of Ms X specifically in relation to her understanding of the issues around her anorexia nervosa. She opined

Dr. Glover went further. Although initially considering that Ms X had the capacity to understand and retain the relevant information, when giving oral evidence he retreated a little from that position, doubting Ms X's ability to 'understand' all of the salient information relevant to the decision. Because Ms X is body dysmorphic she believes she is larger than she is and is unlikely therefore to understand how ill she in fact is. In any event, he was firmly of the view that Ms X was unable to weigh the relevant information (see <I>section 3(1)(c)</I>):

Experienced and expert professionals who have assessed her have had no hesitation in reaching that conclusion. On the evidence which I have heard, I am entirely satisfied that Ms X lacks capacity to litigate and to make decisions about her eating disorder.

Both Dr. A and Dr. Glover were clear in drawing a distinction between Ms X's capacity to make decisions around her eating disorder (anorexia) and her use of alcohol. They both considered that Ms X was able to understand, retain, and crucially weigh up, the decision around drinking; they felt that her drinking was responsive to events – she appeared to be making choices about when to drink, when to drink more, and when to drink less. In particular, Dr. Glover was of the view that Ms X was able to weigh information such as the calorific content of alcohol, and appeared to be aware of the consequences for her liver functioning of continued abusive drinking, including the prospect that it could kill her; Dr. Glover considered that she may limit her alcohol consumption on occasion for this reason. In short, both doctors considered that she had capacity to make decisions about alcohol and I accept these opinions.

It follows that my jurisdiction is 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 has made an Advance Decision in relation to future treatment of her liver disease; it is dated 18 June 2014. She has made clear in that document that in relation to liver disease she wishes to refuse the following treatments:

This Advance Decision was made in accordance with <I>section 24</I> of the <I>Mental Capacity Act 2005</I>, and I am satisfied on the evidence is a "<I>decision made by a person ("P"), after [she] has reached 18 and when [she] has capacity to do so</I>". It follows that "<I>at a later time and in such circumstances as [she] may specify, a specified treatment is proposed to be carried out or continued by a person providing health care for him, and</I> <I>at that time [she] lacks capacity to consent to the carrying out or continuation of the treatment,the specified treatment is not to be carried out or continued</I>".

There is no doubt on the evidence that Ms X had mental capacity to make this Advance Decision when she did so; indeed as indicated above ([30]-[31]) she still does have capacity in relation to the matters reflected by the Advance Decision (per <I>section 25(3)</I> <I>MCA 2005</I>). This Advance Decision is therefore entitled to the fullest respect: as Lord Goff observed in <I>Airedale NHS Trust v. Bland </I>[1993] AC 789 ("<I>Bland</I>") at page 864:

The Advance Decision is relevant to the issues before me in this limited but not unimportant respect; management of Ms X's inter-related conditions become yet more complex when she has capacity to decide on the treatment (or refusal of treatment) for some, but not, crucially, others. As Dr. A observed:

I am naturally steered to exercise my judgment in this case in a manner which attaches the highest (even if not absolute) priority to the preservation and sanctity of life; this approach corresponds with the obligation imposed on me by common law (see [39] below), by the provisions of <I>Article 2</I> of the <I>European Convention on Human Rights</I> ("<I>ECHR</I>"), and accords with the directive in <I>section 4(5)</I> of the <I>MCA 2005</I>. I approach the issue conscious of the importance of protecting Ms X's valuable, and I am satisfied in her case a valued, right to life so far as I am able to do so. In applying this principle, I further adopt the guidance set out in the <I>Mental Capacity Code of Practice paras</I> <I>5.29–5.36 </I>which confirms that "<I>all reasonable steps which are in the person's best interests should be taken to prolong their life</I>" and that there will only be "<I>a limited number of cases where treatment is futile, overly burdensome to the patient or where there is no prospect of recovery</I>".

Unsurprisingly, therefore, prominent among the arguments marshalled and advanced in this case, in considering Ms X's best interests, has been the contention that I should resist taking any step which would have the effect of foreshortening that life. This is not just a theoretical argument, even though there is in fact no material opposition to the outcome contended for by the applicants (which authorises the Trust not to offer treatment). I was encouraged by Mr. Hallin, through his cross-examination of the medical witnesses, to consider the potential benefits to Ms X of long term in-patient treatment for her anorexia (running into years) with the associated advantage that Ms X would have reduced access to alcohol for such period of treatment, thereby ameliorating her alcohol dependence syndrome. While the medical professionals accepted Mr. Hallin's propositions to some extent, they could not accept that in-patient re-feeding treatment would bring real benefits to Ms X in the long-term unless within that period of treatment she could come to see (for the first time) the benefit of talking therapies. Each regarded that prospect as vanishingly low.

None of that takes away from the fact, as I learned from Ms Y in particular, that Ms X retains an interest in life, and has plans for her future – including "<I>visiting places</I>", spending time with her beloved grandfather, distance learning, and enjoying music. Moreover, it is apparent from a number of sources that although she does not want to be compelled to receive treatment, Ms X has no wish to die.

Consistent with my judicial instinct (described in the first sentence of [36] above), I was of course referred by counsel to dicta from a number of the relevant cases in this field, including, but not limited to, the <I>Bland</I> case (above), and the decision of the Supreme Court in <I>Aintree University Hospital NHS Foundation Trust –v- James</I> [2013] UKSC 67, [2013] 3 WLR 1299 ("<I>Aintree</I>"). In <I>Aintree</I>, Baroness Hale interpreted the <I>Bland </I>decision thus:

In the context of the issue of withholding further life sustaining treatment in the context of a patient lacking capacity, Baroness Hale observed that while:

As indicated at [4] above, the medical experts speak with one voice in indicating that the purpose of the re-feeding treatment is to enable Ms X:

Medical treatment is invariably designed to achieve the protection and preservation of life. But there is a paradox in this case: that if I were to compel treatment, I may (and the doctors argue strongly that I would) be doing no more than facilitating or accelerating the termination of her life. I have no jurisdiction to make 'best interests' decisions about Ms X's drinking; that remains wholly within her power. Any treatment for her anorexia (particularly if that is in-patient and compelled) is likely – on past experience – to provoke subsequent increased, sustained and dangerous alcohol consumption which will (in the medical view) hasten Ms X's death.

Any re-feeding treatment would not now, as it never has, address the cause of the anorexia; it would merely serve to prolong life. Dr. A told me (evidence in chief) that:

The paradox extends further; all the medical professionals and Ms Y consider that provided Ms X retains her autonomy, she may well access some medical help – even if it is simply of a palliative nature. I accept their view that Ms X is not apparently choosing to seek help for the palliation of her physical symptoms of her liver disease at the moment due to concerns that these be taken as further signs of malnutrition, and so result in her detention in hospital. If Ms X were to be reassured that she would not be force-fed, she would (it is hoped) be more likely to engage in the palliative care process. Dr. A opined (in cross-examination) that:

There are other factors ranged against the compulsion of medical treatment at this stage for Ms X. The very process of admitting Ms X and compelling her re-feeding would be highly traumatic to her; if she were resistant (and there is reason to believe that she would be) this would inevitably require a degree of restraint which would, as it has in the past, cause her considerable distress. Dr. A told me that Ms X remains distressed for hours and days after insertion of the naso-gastric tube. Ms Y reported as follows:

In this respect, <I>Articles 3</I> and <I>8</I> of the <I>ECHR</I> 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

There are additional hazards too. For example, by the combination of liver disease and previous naso-gastric feeding treatments, Ms X now suffers oesophageal varices (varicose veins in the throat). The procedure for inserting the naso-gastric tube to re-feed her now would have to be undertaken in a district hospital, given the potential complications. The chance of rupturing one of the vessels is of the order of 5%; if this were to occur there would need to be urgent treatment to stem the bleeding.

In considering Ms. X's best interests, I must (per <I>section 4(6) MCA 2005</I>, and so far as "<I>reasonably ascertainable</I>") take account of her own wishes and feelings; these have been elicited by a number of professionals in different contexts. Dr. A reports that:

Dr. A ascertained (helpfully for the purposes of <I>section 4(4) MCA 2005</I>) that Ms X did not want to instruct her own solicitor. Moreover, she did not wish to be in contact with me, even by telephone, or be part of the process.

Dr Glover (the single joint expert) assessed her less than two weeks ago and reported that she:

On the eve of the hearing Ms X sent the Official Solicitor a letter articulating her views which had been written for my attention; I set it out here in full:

I heard evidence from Ms Y, given by telephone from Ms X's home, though (I was told) away from Ms X's earshot. No one in the courtroom, I apprehend, will have been unaffected by what Ms. Y told us, bringing extraordinary wisdom, compassion, objectivity and insight into the current dreadful situation affecting her closest friend. I give weight to this evidence in the best interests determination, pursuant to <I>section 4(7)</I> of the <I>MCA 2005</I>. Ms Y confirmed her real concern that Ms X:

She told me that Ms X would "<I>in no way</I>" be agreeable to admission for treatment: "<I>she cannot cope with it… and is more and more distressed and unable to cope with the admissions</I>", adding poignantly "<I>in all honesty, I think she would kill herself.</I>"

Ms Y had spoken separately to other professionals. She had told the Official Solicitor's representative that when Ms X has been admitted to hospital in the past she "<I>recoils and won't speak or have anything to do with anyone</I>"; she described how Ms X tolerates what is necessary simply long enough to be discharged.

The medical advice marshalled in this case was in the end unanimous – namely that the relief sought by the Trust would be in Ms X's best interests. I was re-assured by the fact that this view was informed not just by those who know Ms X well (including Dr. A, who had herself discussed the case with a regional consultant and mental health colleagues) but by the independent and jointly instructed expert Dr. Glover who had in turn consulted with a professional colleague at the specialist eating disorder unit at Vincent Square. Dr. Glover's opinion can be summarised in the following extract from his report:

Dr. Glover comes to this case having previously advised the courts in <I>A Local Authority v E and Others</I> [2012] EWHC 1639 (COP) [2012] COPLR 441 ("<I>Re E</I>") (Peter Jackson J), and <I>The NHS Trust v L and Others</I> [2012] EWHC 2741 (COP) [2013] COPLR 139 ("<I>Re L</I>") (Eleanor King J). Inevitably, given the superficial similarities between this case and <I>Re E </I>(to a lesser extent <I>Re L</I>), Dr. Glover was asked to explain why Ms X's case was different; while emphasising (and I unreservedly accept) that each case is fact and situation-specific he nonetheless drew attention to the following key points, among others:

I note that the factor identified in [56(ii)] above was key to Peter Jackson J's final analysis – see (§138 ibid.: "<I>the nature of the treatment is different to anything E has previously been offered</I>"). Moreover, it should be noted that treatment of Ms E was said to be "<I>a gargantuan task</I>" in order "<I>to take her from where she is now to where we want to go</I>" (Dr. Glover § 98). Dr. Glover told us that some 2 years after that decision, Ms E is still an in-patient receiving treatment.

This is an unusual and desperately sad case. I believe that I speak for all those who have had to grapple with the issues – medical professionals and lawyers alike – in expressing the hope that Ms X does indeed access some medical treatments which will have the effect of prolonging her life. I have, faithful to the guidance offered by Baroness Hale in the <I>Aintree</I> case, considered the welfare of Ms X<I> "in the widest sense"</I>; I have reflected on what treatment would mean for her, not just medically but socially and psychologically. 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.<I> </I>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.

I hope that Ms X will nonetheless realise that it would be of enormous benefit to her to access treatments (at least in the form of palliative care, nursing support and dietetic guidance) which may improve the quality of the limited life she has left to her, if not to render more dignified its passing.

By order made on 12 September 2014, supported at that stage by an outline of the reasons which I have set out more fully in this judgment, I granted the relief sought by the applicant Trust, set out in [5] above.

That is my judgment.