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England and Wales Court of Protection Decisions
You are here: BAILII >> Databases >> England and Wales Court of Protection Decisions >> Re E (Medical treatment: Anorexia) (Rev 1)  EWCOP 1639 (15 June 2012)
Cite as:  EWHC 1639 (COP),  EWCOP 1639
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IN THE MATTER OF THE MENTAL CAPACITY ACT 2005
B e f o r e :
|A Local Authority||Applicant|
|- and -|
|E (by her Litigation Friend the Official Solicitor)|
|- and -|
|A Health Authority|
|- and -|
Christopher Johnston QC and Susanna Rickard (instructed by the Official Solicitor) for E
Mark Mullins (instructed by Legal and Risk Services) for the Health Authority
E's Parents represented themselves
Hearing dates: 25 & 28 May 2012
Crown Copyright ©
Mr Justice Peter Jackson:
The Mental Capacity Act 2005
1 The principles(1) The following principles apply for the purposes of this Act.(2) A person must be assumed to have capacity unless it is established that he lacks capacity.(3) A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.(4) A person is not to be treated as unable to make a decision merely because he makes an unwise decision.(5) An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests.(6) Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person's rights and freedom of action.
2 People who lack capacity(1) For the purposes of this Act, a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain.(2) It does not matter whether the impairment or disturbance is permanent or temporary.(3) A lack of capacity cannot be established merely by reference to—(a) a person's age or appearance, or(b) a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about his capacity.(4) In proceedings under this Act or any other enactment, any question whether a person lacks capacity within the meaning of this Act must be decided on the balance of probabilities.(5,6) ...
3 Inability to make decisions(1) For the purposes of section 2, a person is unable to make a decision for himself if he is unable—(a) to understand the information relevant to the decision,(b) to retain that information,(c) to use or weigh that information as part of the process of making the decision, or(d) to communicate his decision (whether by talking, using sign language or any other means).(2-4) …
4 Best interests(1) …(2) The person making the determination must consider all the relevant circumstances and, in particular, take the following steps.(3) He must consider—(a) whether it is likely that the person will at some time have capacity in relation to the matter in question, and(b) if it appears likely that he will, when that is likely to be.(4) He must, so far as reasonably practicable, permit and encourage the person to participate, or to improve his ability to participate, as fully as possible in any act done for him and any decision affecting him.(5) Where the determination relates to life-sustaining treatment he must not, in considering whether the treatment is in the best interests of the person concerned, be motivated by a desire to bring about his death.(6) He must consider, so far as is reasonably ascertainable—(a) the person's past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity),(b) the beliefs and values that would be likely to influence his decision if he had capacity, and(c) the other factors that he would be likely to consider if he were able to do so.(7) He must take into account, if it is practicable and appropriate to consult them, the views of—(a) anyone named by the person as someone to be consulted on the matter in question or on matters of that kind,(b) anyone engaged in caring for the person or interested in his welfare,(c) any donee of a lasting power of attorney granted by the person, and(d) any deputy appointed for the person by the court,as to what would be in the person's best interests and, in particular, as to the matters mentioned in subsection (6).(8-11) …
24 Advance decisions to refuse treatment: general(1) "Advance decision" means a decision made by a person ("P"), after he has reached 18 and when he has capacity to do so, that if—(a) at a later time and in such circumstances as he may specify, a specified treatment is proposed to be carried out or continued by a person providing health care for him, and(b) at that time he lacks capacity to consent to the carrying out or continuation of the treatment,the specified treatment is not to be carried out or continued.(2-5)…
25 Validity and applicability of advance decisions(1) An advance decision does not affect the liability which a person may incur for carrying out or continuing a treatment in relation to P unless the decision is at the material time—(a) valid, and(b) applicable to the treatment.(2) An advance decision is not valid if P—(a) has withdrawn the decision at a time when he had capacity to do so,(b) …, or(c) has done anything else clearly inconsistent with the advance decision remaining his fixed decision.(3-4) …(5) An advance decision is not applicable to life-sustaining treatment unless—(a) the decision is verified by a statement by P to the effect that it is to apply to that treatment even if life is at risk, and(b) the decision and statement comply with subsection (6).(6) A decision or statement complies with this subsection only if—(a) it is in writing,(b) it is signed by P or by another person in P's presence and by P's direction,(c) the signature is made or acknowledged by P in the presence of a witness, and(d) the witness signs it, or acknowledges his signature, in P's presence.(7) …
26 Effect of advance decisions(1) If P has made an advance decision which is—(a) valid, and(b) applicable to a treatment,the decision has effect as if he had made it, and had had capacity to make it, at the time when the question arises whether the treatment should be carried out or continued.(2-3)…(4) The court may make a declaration as to whether an advance decision—(a) exists;(b) is valid;(c) is applicable to a treatment.
The Human Rights Act 1998
Article 2 Right to life
1 Everyone's right to life shall be protected by law. No one shall be deprived of his life intentionally save in the execution of a sentence of a court following his conviction of a crime for which this penalty is provided by law.
Article 3 Prohibition of torture
No one shall be subjected to torture or to inhuman or degrading treatment or punishment.
Article 5 Right to liberty and security
1 Everyone has the right to liberty and security of person. No one shall be deprived of his liberty save in the following cases and in accordance with a procedure prescribed by law:(a-d) …(e) the lawful detention … of persons of unsound mind…;
Article 8 Right to respect for private and family life
1 Everyone has the right to respect for his private and family life, his home and his correspondence.
2 There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.
E's medical conditions
The position of the parties
Timing and presentation of the application
The available options
1 Does E at this point have the mental capacity to make decisions about her treatment?
2 If not, did she have mental capacity when she made an advance decision in October 2011, and is that decision valid and applicable?
3 If she lacks capacity and has not made a valid advance decision, is it in her best interests to receive life-sustaining treatment in the form of forcible feeding with all necessary associated measures?
E's current mental capacity
"It seems strange to us that the only people who don't seem to have the right to die when there is no further appropriate treatment available are those with an eating disorder. This is based on the assumption that they can never have capacity around any issues connected to food. There is a logic to this, but not from the perspective of the sufferer who is not extended the same rights as any other person."
E's advance decisions
(1) During a psychotherapy session on 12 November 2011, she said that she had made up her mind to live.
(2) On 15 November, she spoke "eloquently and articulately of her desire to have a life now that she knows she will not be permitted to die."
(3) In March 2012, she said to a Dr V that she wanted to travel and study midwifery and nursing.
(4) On 8 May, she told a Dr L that she did not want to die, but would like to live a normal life, study and have children.
(5) On 16 May, she told Dr D that she is scared, but does not want active treatment.
(6) On 24 May, she spoke of saying goodbye, but wanting to choose life and set her own targets.
E's best interests
- Consider whether, and if so when, it is likely E will have capacity
Recovery of capacity
(1) Treatment carries a very high risk to E's physical health and survival, according to Dr B, consultant anaesthetist. She will experience 'refeeding syndrome', which occurs when the body is called upon to undergo a complete metabolic change to deal with the processing of carbohydrates. E is in a fragile condition and the intensity of the medical intervention is such that her chances of surviving or not surviving treatment are no more than equally balanced. There is also an immediate 2-3% mortality risk from the insertion of a PEG line. E is also very vulnerable to physical trauma as a result of her fragile bones.
(2) The doctors are cautious about the likelihood of E 'recovering', in the sense of returning to a quality of life that she would regard as being worthwhile. Both Dr Glover and Dr M gave estimates overlapping at a 20% likelihood of recovery.
(3) If E survives, the impact of the treatment upon her capacity cannot be known.
(4) On the evidence I have heard, it is not likely that she will recover capacity within a year.
Participation in the decision
E's past wishes and feelings
E's present wishes and feelings.
E's beliefs and values
The views of others
"After so many years of treatment E still finds it impossible to eat. This is her day-to-day reality. However distorted others might view it to be, it is still her reality.
At the meeting in April 2012, all the clinicians that have been involved in E's care over the last few years met and were all in total agreement that she should proceed down the palliative care pathway. We strongly feel that, five weeks into this pathway, this is an inhumane time to bring this into question, especially for a highly anxious woman. During the last five weeks we have watched our daughter preparing for her death in a very dignified and considered way, with a powerful sense of control over her situation. In this time, she has never faltered from her wish not to be re-fed.
We have always gone along with any treatment proposed by either the mental or physical health teams in the hope that she might show signs of "recovery" from her addictions. After 18 years, we have given up on that hope.
It upsets us greatly to advocate for our daughter's right to die. We love her dearly but feel that our role should now be to fight for her best interests, which, at this time, we strongly feel should be the right to choose her own pathway, free from restraint and fear of enforced re-feed. We feel that she has suffered enough. She stands no hope of achieving the things that she would value in her life and shows no signs of revising these aspirations. We would plead for E to have some control over what would be the last phase of her life, something she has been denied for many years. For us it is the quality of her life and not the quantity. We want her to be able to die with dignity in safe, warm surroundings with those that love her."
"E talks about how her "bullet-proof anorexic retreat" is failing her. She needs to find a new foolproof retreat – death. She needs to know she has an exit and has the power to put a stop to things when she wants to. The paradox is how, through her anorexia, she attempts to fortress herself against unwanted invasion and intrusion, and yet in her choice of anorexia, she invites ongoing medical and psychiatric invasion. An example of this is the use of a PEG. The PEG can be seen as a "medical abuse" which links to E's early life experiences. Even her sleep is invaded each night when woken up for nursing procedures.
I see it as an unconscious replay of her childhood sexual abuse – where the scenario is in constant repetition with professionals, as it was with her abuser. The only way she feels she can stop it is through death.
To be invited to make a decision to have a life, a less than perfect life, a compromised life, is absolutely terrifying for her. She would then have to take some responsibility for her fate rather than being able to remain a powerless victim."
"It does not feel appropriate to fight with her at this point; the fight itself (e.g. physically preventing access to the NG or PEG tube, vomiting, laxatives, trying to keep awake all the time) or the intervention (restraint, sedation) could hasten her death, as well as denying that the dignity that is so important.
Our approach would be to provide all care and support short of force-feeding."
"It is profoundly difficult in a case as complicated as this to disentangle a patient's best interest.
One cannot help be influenced by the sincerely held view of her two loving parents.
However, my long and detailed analysis of her care record indicates that E has remained at a BMI of less than 15 for at least six years.
It is widely understood within Eating Disorder Psychiatry that many patients will not recover from the effects of malnutrition unless they have had their BMI increased to 17 or above.
The only time that E's BMI was "forcibly" restored to normal was during her treatment… at the age of 15. It is of note that she went on to complete her A levels and gain a place at medical school in the ensuing years.
Although E has been treated at [three named clinics], at no time during these placements has the treatment plan insisted upon consistent weight gain up to a BMI of over 17.
Indeed, it is notable that E's improvement is so marked as her BMI increases towards 15 that she is allowed a greater say in her treatment, with the effect that she has repeatedly, thereafter, defaulted from further weight gain and re-entered a cycle of food avoidance and weight loss.
Treatment regimes enforcing weight gain appear, to the outsider, somewhat barbaric. The categorical refusal to ingest calories can only be met with forcible feeding either under physical or chemical restraint. This is harrowing for any patient, but particularly for one who was subjected to extensive childhood sexual abuse.
However, one cannot be reassured that a treatment for Anorexia has been "ineffective" unless and until a period of enforced weight restoration has been secured. E's history shows abundant evidence of partial cooperation with re-feeding, a dramatic improvement in mental state, an increased responsibility for the management of her own diet, and her inability to continue with a programme of weight restoration.
Were this a simple case of Anorexia Nervosa with no co-morbidity I would have no hesitation whatsoever in recommending that she receive nutrition in her best interests. E, unfortunately, also suffers from an Alcohol Dependence Syndrome, and Emotionally Unstable Personality Disorder (borderline subtype). The interplay between these three diagnoses is extremely complex. Professor L, in his report, gives a sophisticated argument as to why E is engaging in this repeated pattern of behaviour, the result of which is to lead to repeated cycles of "abuse".
The clinical situation is now extraordinarily complex. E is profoundly malnourished, and perhaps on the brink of death. Furthermore, she is receiving significant quantities of opiate medication and is undoubtedly dependent on this medication. She and her family are psychologically adjusted to the prospect of her imminent death.
The treatment of E as a person rather than a physiological preparation is likely to be torrid. As well as withdrawing from opiate medication she will require forcible re-feeding and would require transfer to a specialist eating disorder unit for that treatment.
Although this decision is finely balanced, I believe that it is in E's best interests to receive nutrition and hydration. I form this opinion with reference to three particular facts:
- E's BMI has not been raised to 17 or above for over seven years. Without this having been achieved it would be unsafe to deem the withholding of nutrition to be in her best interests.
- E shows a significant improvement in her mental state as her BMI is increased to 14.5/15.
- Following her treatment at the age of 15, when her BMI was restored to normal, there followed a period of relative stability and high academic achievement."
"In terms of E's Anorexia Nervosa, I would estimate that were she to be re-fed to a BMI of 17 or above and her weight maintained there through the use of the Mental Health Act and/or Community Treatment Orders, she would have, perhaps, a 20-30% chance of full recovery. Although I am not an expert in the field of substance misuse I am well aware that successful treatment for alcohol dependence can occur after many years of dependence and although E's history of persistent alcohol dependence is unfavourable in terms of prognosis, it should be remembered that this pattern of misuse has occurred on a background of persistent and profound malnutrition.
In terms of her personality disorder, should this indeed be the correct diagnosis, these patterns of behaviour can persist for many years despite long periods of psychotherapy. Again, the pattern of behaviour which has led to the formulation of this diagnosis has occurred on the background of persistent and profound malnutrition. Should this pattern of behaviour persist following restoration of weight, there are numerous psychotherapy approaches, including residential, which have proven to be effective in terms of managing this condition, in particular Dialectical Behaviour Therapy (DBT).
E's opiate dependence has been developing over a number of years. She has now reached a point where she is clearly opiate dependent and currently on a clinically supervised maintenance regime. This condition, again, falls outside my sphere of expertise. However, I am well aware of detoxification programmes which could be employed in E's case involving the controlled withdrawal of her opiate medication and replacement with other forms of analgesia. Subsequently, addiction treatment programmes aimed at enhancing E's motivation to remain abstinent from harmful substances could be employed and are well recognised as having a significant level of success."
"That was naive. The reason was, I anticipated seeing in her notes a pattern of engagement with specialist eating disorder services over many years. I would expect a patient like her to be in a specialised unit for 5 of the last 7 years. The difference is that she has not really accessed meaningful treatment in a highly specialist unit like [the specialist hospital]. She hasn't had her weight restored to BMI 17. Without that I realised I could not be certain at all that it was in her best interests not to receive ANH..."
"When the Court is considering the question of best interests I would draw attention to the fact that I have been repeatedly told by each new expert that this is not a hopeless situation and to refeed E. Each time E has gone through the distress this causes her to be found back in the same situation. With the longevity and severity of her disease I am afraid I am sceptical as to the ability of any specialist to cure E.
E has a difficult to treat combination of problems including personality disorder, dependence on drugs and alcohol as well as anorexia. My problem is not whether I can or will refeed E again, but how many times do I take E through the trauma and at what point should it be decided that refeeding is futile?
Refeeding E is not easy and contains many risks. I have re-fed her on multiple occasions. I would point out the near certainty that over and above psychological distress that would be caused there are significant life threatening risks to undertaking refeeding.
Previously on re-feeding E, she has suffered re-feeding syndrome which is a condition that is induced by starting feeding and has a risk of killing E. It is likely that E will suffer more significant refeeding syndrome on this occasion.
In her current state of extremely frailty E may die irrespective of the court deliberations. She would reach many of the MARSIPAN criteria and even ambulance transport to a local intensive care unit would carry significant physical risk. The physical risk is that of heart rhythm problems, heart failure, and malnutrition related complications such as brain or nerve damage. Refeeding E takes a prolonged period of time with significant mental distress to her. She has told me it feels like reliving the abuse she suffered as a child approximately four times every hour."
Best interests: the factors
- It reflects E's wishes
- Without treatment, E will die
The right to life
"All reasonable steps which are in the person's best interests should be taken to prolong their life. There will be a limited number of cases where treatment is futile, overly burdensome to the patient or where there is no prospect of recovery."
Respect for personal independence
Decision on best interests