A Local Health Board v AB (Rev 1)

This is an application in relation to AB who is a young woman of 34 years old and who has a serious and life threatening cardiac condition, the recommended treatment for which is surgery. In addition to her physical problems , AB is an inpatient at a low secure private hospital under section 3 Mental Health Act 1983(MHA). She has a mild/borderline learning disability which has been the case since her childhood years; a working diagnosis of autism which affects her anxiety levels, impulse control and mood regulation; a schizophrenic illness with prominent persecutory thinking. It is argued that the combination of the above factors in relation to her functioning leads to the conclusion that she lacks the capacity to litigate and to make a decision about her medical treatment.

Permission to make the application under the Mental Capacity Act 2005(MCA) was granted by Wood J on 21^st January 2015. There was real urgency in arranging a final hearing of the application which should be close enough to AB’s placement to allow her to attend and/or meet with the judge and/or give evidence. In those circumstances the application was released to me to be heard sitting as a section 9 judge and as a judge of the Court of Protection.

The issues raised in the application justify the matter being heard in public. I made a reporting restriction order on the first day of the hearing and I was satisfied that appropriate notice had been given to the media. No-one attended to argue that the order sought was not proportionate.

As it transpired, the view was taken that it would not be in AB’s interests to meet with the judge because she was becoming increasingly anxious about the number of professionals who were coming to see her and asking her what her views were. She did not want to speak to any one further even if that was the judge who was to make the decision. The position was agreed that no specific arrangements would be made but it would be left open should circumstances change during the hearing or before the order was made. The fragile nature of both her physical health and her psychological health were important matters to be taken into account.

The court made an order for two independent expert reports; from a cardiac surgeon and from a consultant psychiatrist with expertise in learning disability. I have heard evidence from Mr McGoldrick and from Dr Matthews, both of whom filed helpful and comprehensive reports. Additionally I have heard from Dr K, the consultant cardiac anaesthetist, who will look after AB if the operation takes place and from Dr M, who is AB’s responsible clinician, each of whom had filed statement evidence. The evidence was explored fairly but economically and with a proper focus on how the court could be assisted to make the very difficult decision about AB’s future medical care.

AB’s Independent Mental Capacity Advocate was present for the hearing but did not make any oral representations. AB’s parents are both alive and in recent years have been able to resume a relationship with their daughter through her mother visiting her and telephone contact with her father. Her mother filed a letter which explains fully the difficulties they feel they are placed in. Understandably they are concerned about AB’s health and also about the impact of an operation on AB which they feel she would find very stressful. They want the best outcome for her whatever that may be and take a position of sophisticated neutrality.

I am fully satisfied that their position is justified by their experience of being involved in decisions about their daughter’s care in the past and it is both a responsible and respectable approach to the issues raised in the case as a whole.

It was agreed at the start of the hearing that AB’s status as section 3 patient in a hospital would exclude the powers of the Court of Protection as a result of the operation of Schedule 1A MCA paragraph 2 but equally the nature of the medical issue was physical and not linked to her mental disorder which would prevent any medical treatment being provided to her under the provisions of the Mental Health Act 1983 without her consent.

The agreed position of the advocates was that the court would have to fall back on the inherent jurisdiction and make appropriate declarations to fill the lacuna in the statutory scheme.

The Health Board accept the medical evidence that AB lacks capacity to make decisions about her own medical treatment. Further that the medical need for surgery is clearly made out as the risk of death from the untreated cardiac condition is significant and increasing and can only be properly addressed by elective surgery rather than a “wait and see” approach which would mean surgery as a last resort in the event of a rupture of AB’s aortic aneurism. It is also accepted that there should be dental surgery to remove AB’s lower teeth before the heart operation takes place.

Further the process of managing AB in the post operative period will give rise to issues of restraint that may be both physical and chemical that would breach AB’s rights under Article 5 ECHR.

Whatever be the strength of the medical evidence, AB is firm and clear that she does not want surgery. Attempts have been made by her treating clinicians and the clinical team around her to explain the benefits of surgery and by Dr Mathews and the representative of the Official Solicitor. AB has understandable fears around the procedure such as not waking up which may be held by a capacitous adult. Equally AB does not want to die but she would rather see what happens without surgery.

On AB’s behalf, the Official Solicitor supports the making of a declaration that she does not have capacity to conduct the proceedings or to make decisions about whether to undergo dental and cardiac surgery.

On the merits of the proposed surgical procedures, his position statement referred to AB’s expressed wishes and feelings and recognised that her inability to understand the nature of her cardiac problem and its implications for her future as well as the risk of death and the importance of preserving life may limit the weight to be attached to her wishes and feelings.

The Official Solicitor also draws attention to the risk of death during the surgery itself and the complications that may ensue; the substantial risks in the post-operative period and the need for sedation and restraint if AB was resistant to necessary medical procedures; the psychological impact on AB of having undergone such an operation against her wishes when she becomes aware of what has happened to her and whether it would make her mental state worse.

The Official Solicitor identified the balance between the risks and benefits in the proposed treatment and the deprivation of liberty involved in the clinical management of AB in the post operative period.

On 13^th October 2014 AB was diagnosed with an aortic dilatation/swelling (aneurism) of 6.8/7cm at the level of the aortic root which is just as the aorta leaves the heart and the aortic valve is leaking blood. It is asymptomatic although AB has had an abnormal heart rhythm and was diagnosed with an abnormal connection between the two main chambers of the heart in her childhood. Mr McGoldrick was of the view that the congenital heart defect was a “red herring”.

There is a high risk of rupture of the aneurism which would lead to sudden and immediate death with little or no opportunity for emergency surgery and she would be in extreme pain. The hinge point for surgery is an aneurism of 5.5cms because the likelihood of rupture is over 30% with a mortality rate increasing by 15%yearly thereafter. The size of the aorta at the point of the aneurism is now twice the expected dimension and it will get bigger. Eventually it will rupture if it is untreated. The main trigger events are severe exertion or emotional events.

There is no medical treatment that can be recommended and surgery with a repair of the aneurism and the use of a tissue aortic valve replacement is the treatment of choice. The tissue valve may degenerate over time and could require a second replacement operation in 8-15 years. However there are developing catheter based techniques which may remove the need for further surgery over the next 10 years or so.

If a mechanical valve was used there is a risk of blockage if warfarin is not taken as prescribed to thin the blood. There is a likelihood AB would not be warfarin compliant in the light of her other difficulties. If the valve was to jam, AB would die and there could be fatal consequences for her as a result of uncontrolled bleeding if she had an accident when she was taking warfarin. Mr McGoldrick preferred the prospect of two operations to one operation with warfarin treatment which involved greater risk to AB. The only available medical management which delays rupture but does not cure the problem is to manage blood pressure and stress.

The statistics for mortality are 8-14% for elective composite Aortic Root Replacement which is what is proposed for AB and 35-40% for emergency procedures. However these are based on a cross section of operations and surgeons who may be of differing levels of skill and experience. Generally mortality figures for cardiac surgery are less than 5%.

Aside from general mortality risks, there are possible post operative complications from smoking (AB smokes at least 1 cigarette per hour), possible Infective Endocarditis as a result of AB’s poor dental hygiene and the extent of the decay in her remaining lower teeth, and the need to prevent active resistance from AB to the necessary monitoring and treatment equipment that will be attached to her. She may require kidney dialysis for a period to help her limited kidney function because of the change in the nature of the blood flow during surgery but it should not last more than a few days.

Mr McGoldrick did not think it would be possible to get AB to stop smoking in advance of the surgery and it would have to be managed. AB needs to have her remaining teeth removed before her cardiac surgery and he would prefer to see a period of healing to minimise the risk of infection. He described dental sepsis as a real concern.

The current proposal is to have a 5-6 day gap between the dental surgery and the main cardiac operation. AB would remain in hospital as an inpatient during the whole period. The advantage is that this would reduce the need for sedation or anaesthesia on a second occasion to get AB to hospital. However the period is much shorter than the 2-3 weeks envisaged by Mr McGoldrick in his report. I was informed by the advocates that when the plan was discussed with him outside of court he did not express any contrary view. On further enquiry the applicant Board was able to reassure the court that there would be a senior dental clinician available during this period to monitor the state of healing from the dental surgery and the presence of any possible infection.

He described all patients experiencing a degree of confusion in the post operative period but very few purposefully try to harm themselves. Physical restraint and sedation are available and although AB is at the upper end of the risk spectrum for resistance there would be sufficient experience to manage the risk. It should not be assumed she would resist and her wound would heal if not interfered with.

It was Mr McGoldrick’s view that if the operation was successful, AB would be restored to normal life expectancy for a woman with her other difficulties. If she did not have the surgery, she would be at immediate and increasing risk of rupture of the aneurism and almost instantaneous death.

Dr K explained that experienced intensive care staff would be available together with AB’s more familiar staff to provide reassurance and when needed sedation and gentle physical restraint by way of holding AB’s hands or custom made restraints. Most of the monitoring equipment would be removed within 48 hours leaving her with a cannula in the back of her hand for the administration of any medication. The chest drain which can cause most distress would be removed when she was asleep and her pacing wires which are the most important piece of equipment in maintaining her heart function would be difficult to remove. AB’s recovery period would be about 10-15 days with the first week as the most crucial.

His evidence confirmed the expectation of Mr McGoldrick that the post operative period could be managed successfully, particularly with input from staff from her placement who she knows.

Dr Matthews had limited clinical involvement with AB in her home area prior to her instruction in this case but it does not compromise her independence as a court appointed expert. Her clear view was that AB lacked capacity to conduct litigation as she was unable to understand the processes involved. There was evidence that she was not able to listen to advice from others and did not like being told what to do. She appeared to understand that lawyers asked questions which was linked to her experiences of Tribunal hearings.

AB did not want to discuss the operation. She has expressed the view that her heart has been stolen by different people and she has been given a different heart and her thoughts and behaviour around her heart are delusional in quality.

The combination of AB’s cognitive deficits and her psychological processes which cause her overwhelming anxiety, low mood, denial and development of false beliefs compromise her capacity to make a decision about her medical treatment to the point where she lacks that capacity. She does not have a basic understanding of her condition and its proposed treatment. She is unable o weigh up the options and to explain why she does not want treatment.

Dr Matthews was clear that AB had a mild/borderline learning disability based on her history. Her diagnosis of autism has a significant impact on her decision making abilities. Specifically she finds interactions stressful; she has communication difficulties and cannot imagine that she could have damage to a part of her body which is not causing symptoms.

When AB is overwhelmed emotionally she experiences paranoid symptoms and episodes of psychosis with sustained persecutory beliefs. As a means of coping with her levels of stress she has developed more pronounced bizarre belief systems which include elements of her cardiac condition and affect her decision making abilities. She may have a defect state as part of a schizophrenic illness and this would also affect her decision making abilities.

In her oral evidence Dr Matthews agreed that the psychological balance sheet is more complex that the physical one. However there are potential advantages to AB’s psychological state of having the surgery.

Firstly, she could be given different medication for her mental state such as clozapine, an anti-psychotic drug , which is contra-indicated at the moment because of its effect on her cardiac rhythm. She has had a successful admission historically when she was treated with clozapine leading to planning into the community.

Second, the immediate and serious risk of rupture of the aneurism and death has lead to 2:1 staff monitoring at arms length which AB finds very intrusive. The stresses have heightened her anxiety levels with a consequent deterioration in her overall mental state.

Thirdly, the dominant factor in her current treatment plan is the management of her cardiac issues rather than her psychological state and the clinical team and staff have not tried to boundary AB’s behaviour to avoid raising her anxiety levels which may impact on her cardiac condition.

The contrary factors are that her responses to the experience of surgery that she does not want and does not understand are unknown and may make her psychological state worse and there is a limited amount of history which can act as a reliable guide.

The first area of concern is her immediate response to being told that she will have surgery. Dr Matthews leaned in favour of not informing AB until a few days before or possibly even the morning of the operation because giving her full information has not been successful in the past. Dr M, AB’s registered clinician thought that getting her used to the idea over a period of a few weeks was preferable. I detected that Dr Matthews did not think that was a good idea but it is a decision for the clinical team.

Dr Matthews advised that her treating team should identify positive stimuli which could help to manage her levels of arousal. This could be using AB’s favourite CDs as distraction techniques. A useful tool to manage the pre procedure stresses is for events to happen as tightly as possible. The recent hospital admission for cardiac tests which lead to the diagnosis was more successful before AB became habituated to the hospital.

What is known from AB’s history is that although she can object verbally and physically to things she does not want to happen in advance of the event, she has usually co-operated with a procedure when it is underway and she becomes passive.

Dr M was of the view that AB may well forget the operation after a few weeks because she does not use abstract thought and is distracted by immediate events. The removal of the physical risk to her health would improve her psychological health. AB has not said she will defy the court decision and her current attitude is that the court will be persuaded that the operation should not happen. He thought that AB may well behave differently in hospital that in her placement.

The medical team would need to be aware that she may not reveal her levels of pain and discomfort but she may also respond negatively to it. These staff may not become part of her persecutory ideas if they have to restrain her as part of her treatment. There is also evidence that she would adjust to the operation scar although in the short term it would be likely to trouble her. There is no evidence that she has damaged scars from previous episodes of self harm.

In the overall balance Dr Matthews had not identified any area which indicated that the operation should not go ahead.

The legal principles are not in dispute. The issue of capacity is governed by sections 2 and 3 Mental Capacity Act 2005(MCA) and should be decided as an issue within the Court of Protection.

AB will lack capacity in relation to a matter if at the material time she is unable to make a decision for herself in relation to that matter because of an impairment of, or a disturbance (which may be permanent or temporary) in the functioning of the mind or brain. The issue of capacity is to be decided on the balance of probabilities.

AB will be unable to make a decision for herself if she is unable to :

Mr Lock QC submitted a very helpful position statement on the interaction of the Mental Capacity Act 2005 and the Mental Health Act 1983(MHA) and the surviving jurisdiction of the High Court under the inherent jurisdiction where there is a gap in the legislative provisions. It is agreed as a statement of the relevant principles by Mr Gatenby and therefore I will summarise its main points.

The combination of section 4A and section 4B MCA permits the court acting within the powers conferred by the Act to lawfully deprive a person who lacks capacity of their liberty as a result of a decision taken in that person’s best interests where it is necessary to give life sustaining treatment. However the proper construction of section 4B MCA is that it governs the giving of life sustaining treatment in an emergency not where there is a full opportunity to have the matter resolved by the court. If therefore there was a need for AB to have emergency surgery pending a decision of the court the LHB could rely on these provisions but not in relation to elective surgery which is the issue before the court.

The next relevant provision is section 16(2)a MCAwhich gives the court the power to make decisions on behalf of a person who lacks capacity and to make an order depriving the person to give effect to a decision concerning his or her personal welfare :sections 4A(1)-(4)MCA. The limitation imposed by section 16A MCA also has to be considered because a person who is subject to the statutory regime of the MHA be ineligible to be deprived of liberty under a section 16 order if that person comes within Schedule 1A of the MCA.

AB is detained under the MHA but will be given leave by her responsible clinician under section 17 of that Act to attend at hospital for her surgery. There will be additional restraints on her liberty during and after the operations which will amount to a deprivation of liberty under the principles in Cheshire West and Cheshire Council v P [2014] AC 896 .

AB comes within either Case A or Case B under paragraph 2 of Schedule 1A MCA. To fall within Case A she would have to be subject to the hospital treatment regime and detained in a hospital under that regime. If section 17 leave were to be given she would remain subject to the hospital treatment regime but would only be detained in a hospital under that regime if conditions were attached to the leave requiring her to remain at the hospital for the duration of her surgery .In that situation she would fall within Case A and the court would not be able to make a best interests order or authorise deprivation of liberty.

If no conditions are attached to her section 17 leave AB would not be detained under that regime referring back to the “hospital treatment regime and any decision about deprivation of liberty would fall to be made under the MCA rather than the MHA.

Case B would apply if AB remains subject to section 3 MHA so that she is “subject to the hospital regime” but is given leave to attend the hospital without conditions attached which require to remain at the hospital for the duration of her surgery. Under paragraph 3(2) Schedule 1A unless the proposed treatment is in accordance with a requirement which the relevant regime imposes she is ineligible to be deprived of her liberty under the MCA.

In addition an effective welfare order would need to include deprivation of liberty authorisation to allow the surgery to go ahead successfully e.g. sedation (a chemical restraint) and/or physical restraint to overcome any active opposition to the procedures and this is excluded by section 16A(2) as soon as the person becomes ineligible under Schedule 1A.

It is necessary therefore for the court to authorise any additional measures that amount to a further deprivation of liberty even though AB would be deprived of her liberty under the MHA regime. The effect of a series of ECHR decisions summarised in the third such decision Munjaz v United Kingdom [2012] ECHR 1704 is that whether there has been (or will be) a further deprivation of liberty must depend on the facts of the case and a distinction can be drawn between further deprivation of liberty and a further restriction upon a person’s liberty. A significant factor in Munjaz was that the need for his seclusion arose from the nature of his mental health issues and was part of his treatment regime within the hospital where he was detained.

The point is made that AB will be receiving treatment for her serious and life threatening cardiac condition at a different hospital and this will amount to a further deprivation of her liberty.

The court is asked therefore to look to the inherent jurisdiction of the High Court to grant the declarations necessary to permit the surgery to be carried out (including the preceding dental surgery insofar as the jurisdiction survives the implementation of the MCA.

This area was explored by Baker J in A NHS Trust v A [2013]EWHC 2442(Fam) starting at paragraph 89. The learned judge had rejected an argument that he should read into section 16A words that would exclude its operation where the proposed deprivation of liberty was for the purpose of upholding the right to life under Article 2 ECHR or to take a narrow construction of section 16A(1) so that a welfare order or authorisation of deprivation of liberty is permitted contrary to the words of the Act when necessary to uphold the right to life.

Baker J concluded that the common law jurisdiction in respect of an incapacitated adult to give or to withhold consent to medical treatment in the best interests of the patient was available. He referred to two decisions of the Court of Appeal in which it was accepted that in situations outside of the MCA the inherent jurisdiction is available to protect the welfare of incapacitated adults : Westminster City Council v C [2009]Fam 11 ; In re L (Vulnerable Adults with Capacity: Court’s Jurisdiction) (No 2) [2013] Fam 1 . He cites the conclusions of McFarlane LJ in Re L to the effect that there is no specific provision in the MCA similar to section 100 Children Act 1989 limiting the availability of the inherent jurisdiction.

At paragraph 93 , Baker J said this :

“------ The reasons identified by Mr Moon and Miss Street are as follows : (1) The prohibition on making an order which authorises the person being deprived of his liberty is expressly restricted to the Court of Protection exercising its statutory jurisdiction under the 2005 Act and is not , but could have been extended to the High Court exercising its inherent jurisdiction.(2)Following McFarlane LJ in In Re L, the clear implication is that Parliament did not intend to prevent the High Court exercising its jurisdiction to make an order in the best interests and in order to uphold the article 2 rights of a person lacking capacity in the circumstances of a case such as this . (3) Furthermore Parliament cannot have intended to remove the safety net from a person lacking capacity who requires the orders sought to be made in order to prevent his death. (4) The relevant concept is his ineligibility to be “deprived by this Act: section 16A(1) and paragraph 2 of Schedule 1A . (5) If a person is ineligible to be deprived of his liberty by the 2005 Act, section 16A provides that “the court may not include in a welfare order provision which authorises the person to be deprived of his liberty “.In this provision: (a) “The court” means the Court of Protection; and (b) “the welfare order” means an order under section 16(2)(a) of the 2005 Act by the Court of Protection. I agree with those submissions. ”

At paragraph 96 he confirms the existence of the inherent jurisdiction and refers to the possibility of clarification of the interpretation of section 16A by the courts. No authority which offers a different interpretation and which has been decided subsequently to the decision of Baker J has been drawn to my attention. Therefore I approach this case on an identical basis as to the existence of the inherent jurisdiction. As indicated above this is an agreed position between the advocates.

I agree that I should approach the best interests decision for AB taking into account the matters set out at section 4 MCA even though this is not an order that will be made under the Act.

The fact that AB suffers with serious psychological difficulties and has been subject to in-patient treatment compulsorily under the MHA so that it may be considered by some that she does not have an equivalent quality of life to a person with capacity and without her difficulties should be excluded from the court’s consideration. Otherwise a person in need of a protective decision would be at risk of being treated less favourably than any other person.

Although there was helpful evidence from Dr Matthews about positive steps that could be taken as part of post operative treatment plan to improve AB’s quality of life and increase the possibility of a rehabilitation into the community, it is not argued on AB’s behalf that there is any likelihood that she will regain capacity or have capacity in relation to this issue. In addition there is a real measure of urgency because of the immediate risk to her health and life. Sadly, AB has been experiencing her psychological difficulties for most of the last 15 years based on Dr Matthews’ evaluation of her clinical records (Section 3 pp83-90).

AB’s participation in the proceedings has been recognised as an important factor in the management of the case. A combination of her own expressed wishes and consideration of the impact on her physical and psychological health of taking part in the hearing or meeting with the judge has meant that her participation has been indirect. She met with Mr McGoldrick and Dr Matthews as well as the Official Solicitor’s representative. I have through them as accurate a picture of AB and her wishes and feelings about the possibility of surgery as is possible in the circumstances.

AB does not want to have an operation. She has a fear that she will not wake up and has told others that she may die during the surgery. She knows that she was told that she had a heart problem when she was younger and nothing has happened to her as a result of that (her Ventricular Septal Defect). She is right about that but her major medical problem has a different cause, namely the swelling in the aorta and the leaking aortic valve. She does not agree that she has a problem with her heart that needs to be treated.

However she does not want to die and would expect to be “rescued” by emergency treatment if she collapsed.

The medical evidence is uncontroversial and powerful. The only treatment for this heart defect is surgery. Without surgery there is an increasing likelihood of rupture and almost instantaneous death. She is beyond the hinge point when surgery is necessary and she is fortunate that this has not happened already. Over 30% of patients who have not had surgery die by the time that the aneurism has reached 5.5cm with most having died within 5 years after the hinge point. There are mortality risks in surgery but they are far less than the risk of AB dying as a result of a rupture of the aneurism. AB’s individual risks because her kidney and smoking needs can be dealt with clinically.

On the medical evidence, the choice is stark.

The medical and psychological evidence indicates that the pre and post operative treatment issues which rightly concern the clinical team who will be responsible for the surgery either may not materialise to the extent feared if AB does not actively resist the treatment or are capable of being managed because she is not unique if she responds adversely in the post operative period to the treatment and monitoring equipment and intensive care staff have the necessary training to deal with these problems.

Dr Matthews could not identify any reasons from the point of view of AB’s psychological health why the surgery including the dental surgery should not go ahead. This included the potential impact on AB of living with the consequences of having something done to her which she does want and the reminder of having an operation scar. Her clinical team consider that AB’s concrete thinking will be protective in the longer term.

The possibility of further surgery to replace the tissue valve has receded as a concern to some extent in the light of Mr McGoldrick’s evidence about the developing techniques of managing a tissue valve. On the issue of continuing medication for her heart, AB been used to taking other forms of medication for many years with greater or lesser success depending on her situation at the time. It is likely that any additional treatment in the longer term can be managed.

During the hearing of evidence factors emerged which indicate that successful surgery would have beneficial consequences for her day to day life in terms of a change in her medication to a more successful anti-psychotic , a reduction in the intrusive level of staff monitoring which AB finds difficult and a renewed focus on AB’s psychological needs by her clinical team.

These are all factors which AB is not able to consider on the evidence of her cognitive and psychological state.

The position of AB’s parent is understandably difficult and their approach which has been to leave the decision to the medical professionals is equally understandable. They have a genuine concern for all aspects of their daughter’s welfare and want to be able to remain in contact with her. That is in her interests also undoubtedly.

The court has to balance the risks and benefits to AB of the proposed treatment in making a best interests decision. Great care has been taken on her behalf by the Official Solicitor in exploring both the potential risk factors and the benefits of successful surgery.

The court recognises that imposing two unwanted surgical procedures on AB, one of which is serious and accompanied by risks in itself undermines her personal autonomy over her own body and is therefore a very serious step and only to be taken where it is necessary in her own interests. This is not a case in which the proposed course of medical treatment is merely desirable or would make AB’s day to day life easier. She is at risk of dying if she does not undergo this particular cardiac surgery and the necessary pre – operation dental extractions. Any further restriction of her liberty during the two surgeries and the pre and post operative processes is also necessary and in AB’s best interests.

I accept the medical and psychological opinion of the court appointed experts and their assessment that steps can be taken to reduce and manage the risk factors which have been identified in the evidence and reports.

I conclude that: