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An unmusical Mozart – a patient’s right to say no to surgery

 

The Court of Protection dealt with a challenging case in Wye Valley NHS Trust v B 2015. The case was decided by Mr Justice Peter Jackson, and as ever he brings analysis, kindness and humanity to bear on a very difficult issue in the Court of Protection.

http://www.bailii.org/ew/cases/EWCOP/2015/60.html

 

Here a man who clearly lacked capacity to make a fully informed decision, had expressed extreme hostility towards having an operation to amputate his foot. The medical professionals were clear that if he did not have his foot amputated, that the infection in it would spread and eventually kill him.

 

The Court had to decide whether it was in the man’s best interests to have the operation against his will or whether it was in his interests to respect his autonomy and wishes even though it would have adverse consequences.

A person who has capacity to understand the medical advice and risks and consequences would be able to say no to surgery in any event. What the Judge had to do here was consider what weight to give to the man’s wishes and the context of those wishes being expressed by a person who did not have the capacity to fully weigh up the pros and cons.

 

  1. Where a patient lacks capacity it is accordingly of great importance to give proper weight to his wishes and feelings and to his beliefs and values. On behalf of the Trust in this case, Mr Sachdeva QC submitted that the views expressed by a person lacking capacity were in principle entitled to less weight than those of a person with capacity. This is in my view true only to the limited extent that the views of a capacitous person are by definition decisive in relation to any treatment that is being offered to him so that the question of best interests does not arise. However, once incapacity is established so that a best interests decision must be made, there is no theoretical limit to the weight or lack of weight that should be given to the person’s wishes and feelings, beliefs and values. In some cases, the conclusion will be that little weight or no weight can be given; in others, very significant weight will be due.
  2. This is not an academic issue, but a necessary protection for the rights of people with disabilities. As the Act and the European Convention make clear, a conclusion that a person lacks decision-making capacity is not an “off-switch” for his rights and freedoms. To state the obvious, the wishes and feelings, beliefs and values of people with a mental disability are as important to them as they are to anyone else, and may even be more important. It would therefore be wrong in principle to apply any automatic discount to their point of view.
  3. In this case, the Trust and the Official Solicitor consider that a person with full capacity could quite reasonably decide not to undergo the amputation that is being recommended to Mr B, having understood and given full thought to the risks and benefits involved. However, the effect of their submissions is that because Mr B himself cannot balance up these matters in a rational way, his wishes and feelings are outweighed by the presumption in favour of life. It is, I think, important to ensure that people with a disability are not – by the very fact of their disability – deprived of the range of reasonable outcomes that are available to others. For people with disabilities, the removal of such freedom of action as they have to control their own lives may be experienced as an even greater affront that it would be to others who are more fortunate.
  4. In some cases, of which this is an example, the wishes and feelings, beliefs and values of a person with a mental illness can be of such long standing that they are an inextricable part of the person that he is. In this situation, I do not find it helpful to see the person as if he were a person in good health who has been afflicted by illness. It is more real and more respectful to recognise him for who he is: a person with his own intrinsic beliefs and values. It is no more meaningful to think of Mr B without his illnesses and idiosyncratic beliefs than it is to speak of an unmusical Mozart.
  5. Further, people with Mr B’s mental illness not uncommonly have what are described by others as “religious delusions”. As appears below, he describes hearing angelic voices that tell him whether or not to take his medication. Delusions arising from mental illness may rightly lead to a person’s wishes and feelings being given less weight where that is appropriate. However, this cannot be the automatic consequence of the wishes and feelings having a religious component. Mr B’s religious sentiments are extremely important to him, even though he does not follow an established religion. Although the point does not arise for determination in this case, I approach matters on the basis that his Article 9 right to freedom of thought and religion is no less engaged than it would be for any other devout person.
  6. This is another manifestation of the principle that the beliefs and values of a person lacking capacity should not be routinely undervalued. Religious belief has been described as a belief that there is more to be understood about mankind’s nature and relationship to the universe than can be gained from the senses or from science: R (Hodkin and another) v Registrar General of Births, Deaths and Marriages [2014] AC 610 at [57]. Religious beliefs are based on faith, not reason, and some can strongly influence the believer’s attitude to health and medical treatment without in any way suggesting a lack of mental capacity. Examples include belief in miraculous healing or objections to blood transfusions. There may be a clear conceptual difference between a capable 20-year-old who refuses a blood transfusion and an incapable elderly man with schizophrenia who opposes an amputation, but while the religiously-based wishes and feelings of the former must always prevail, it cannot be right that the religiously-based wishes and feelings of the latter must always be overruled. That would not be a proper application of the best interests principle.
  7. Having commented on the process of evaluating wishes and feelings, I refer to the Law Commission’s current consultation paper No. 222: Mental Capacity and Deprivation of Liberty. It proposes [Proposal 12.2] that s.4 of the Act might be amended so that an incapacitated person’s wishes and feelings should be assumed to be determinative of his best interests unless there is good reason do depart from the assumption. It is said [12.42] that there is insufficient certainty about the weight to be given to a person’s wishes and feelings and that prioritising them would reflect to some degree the approach of the United Nations Convention on the Rights of Persons with Disabilities.
  8. In the above discussion, I have identified some of the circumstances in which the wishes and feelings of incapacitated individuals might be unjustifiably undervalued. However, my respectful view is that the Law Commission proposal would not lead to greater certainty, but to a debate about whether there was or was not “good reason” for a departure from the assumption. To elevate one important factor at the expense of others would certainly not have helped the parties, nor the court, in the present case. All that is needed to protect the rights of the individual is to properly apply the Act as it stands.

 

For my part, I think that the proposal by the Law Commission would be a beneficial addition for dealing with these cases, putting a rebuttable presumption that a person’s expressed wishes should be followed unless there are strong reasons for the contrary. Whilst many Court of Protection Judges (including this one) have a very healthy respect for autonomy and the wishes of the patient, some still tend to veer towards the wrapping P in cotton wool and the patrician approach.

 

Lastly, I refer to the principle at s. 4(4) that so far as is reasonably practicable, the person must be permitted and encouraged to participate as fully as possible in any decision affecting him. In this case, given the momentous consequences of the decision either way, I did not feel able to reach a conclusion without meeting Mr B myself. There were two excellent recent reports of discussions with him, but there is no substitute for a face-to-face meeting where the patient would like it to happen. The advantages can be considerable, and proved so in this case. In the first place, I obtained a deeper understanding of Mr B’s personality and view of the world, supplementing and illuminating the earlier reports. Secondly, Mr B seemed glad to have the opportunity to get his point of view across. To whatever small degree, the meeting may have helped him to understand something of the process and to make sense of whatever decision was then made. Thirdly, the nurses were pleased that Mr B was going to have the fullest opportunity to get his point across. A case like this is difficult for the nursing staff in particular and I hope that the fact that Mr B has been as fully involved as possible will make it easier for them to care for him at what will undoubtedly be a difficult time.

 

[that noise you can hear is me applauding]

 

The Judge sets out the pros and cons of the best interests decision very well – the judgment is short, and well worth a read for those sections.

  1. Conclusion
  2. Having considered all of the evidence and the parties’ submissions, I have reached the clear conclusion that an enforced amputation would not be in Mr B’s best interests.
  3. Mr B has had a hard life. Through no fault of his own, he has suffered in his mental health for half a century. He is a sociable man who has experienced repeated losses so that he has become isolated. He has no next of kin. No one has ever visited him in hospital and no one ever will. Yet he is a proud man who sees no reason to prefer the views of others to his own. His religious beliefs are deeply meaningful to him and do not deserve to be described as delusions: they are his faith and they are an intrinsic part of who he is. I would not define Mr B by reference to his mental illness or his religious beliefs. Rather, his core quality is his “fierce independence”, and it is this that is now, as he sees it, under attack.
  4. Mr B is on any view in the later stages of his life. His fortitude in the face of death, however he has come by it, would be the envy of many people in better mental health. He has gained the respect of those who are currently nursing him.
  5. I am quite sure that it would not be in Mr B’s best interests to take away his little remaining independence and dignity in order to replace it with a future for which he understandably has no appetite and which could only be achieved after a traumatic and uncertain struggle that he and no one else would have to endure. There is a difference between fighting on someone’s behalf and just fighting them. Enforcing treatment in this case would surely be the latter.
  6. The application, which was rightly brought, is accordingly dismissed.
  7. I conclude by thanking the parties and witnesses for the quality of their contributions and by paying tribute to the high standard of care and treatment that Mr B is now receiving.

 

“I need two volunteers – you, and you” – how ‘voluntary’ is voluntary accommodation?

A consideration of the High Court decision in CA (A Baby), Re [2012] EWHC 2190 (Fam) (30 July 2012)  and whether it is now legitimate for a social worker to ask a mother to agree voluntary accommodation of a baby.  (answer, probably not)

 

I think it would not be unreasonable to describe this case as being to section 20 what Re X was to EPOs.

 

The case can be found here :-

http://www.bailii.org/ew/cases/EWHC/Fam/2012/2190.html

 

Much of the case relates to a factual determination of applications for Care and Placement Orders, but the important bit of wider import can be found in the passages dealing with the mother’s case that her human rights had been breached by the Local Authority effectively pressuring her into agreeing section 20 voluntary accommodation of her child.

 

As far as I am aware, this is the first case dealing with the vexed issue of whether someone has genuinely agreed section 20 accommodation, and whether when the LA effectively pitch up and say “You’ve got to agree to accommodate” there is actually any element of choice involved.

23. Substantial discussions took place on the first day of the hearing (and had of course been in train for some time) which resulted in the local authority conceding the mother’s claim under Section 7 of the 1998 Act. The substance is recorded in the recitals to the order but in effect acknowledge two matters: first, that a Section 20 consent should not have been sought on 1st February 2012; and secondly, that such a removal was not a proportionate response to the risks that then existed. In the event the local authority accepts breaches of the Article 8 rights of both mother and child. The Order with its recitals is annexed to and should be read in conjunction with this judgment

24. The mother, in discussion about damages, asked that they be applied to the costs of her receiving the therapeutic input that has long been advised. The parties have agreed the payment of damages and other provisions which all accept amount to ‘just satisfaction’ of both these claims. It is important to stress that nothing in the subsequent discussion of Section 20 agreements or indeed anything else in this judgment is intended to impugn (nor should it be so read) the propriety of that resolution of the Human Rights claim to which indeed the court (since a minor is a party) specifically gives its approval.

 

So, that’s already quite a big deal – the Court (and the parties) accepting that there would be circumstances in which the LA seeking a section 20 agreement and accommodating the child as a result would be a breach of the mother’s article 8 rights and compensation of some kind is payable.

[Going back to my overarching theme of the law of unintended consequences, I hope HMCS are aware of the deluge of Emergency Protection Order applications that might flow from this sort of decision, as these s20 arrangements are often a stopgap or bridge to get into Court for an ICO hearing, which is now seemingly no longer an option]

It is important to note that there were genuine doubts about the mother’s capacity to agree to section 20 accommodation, as a result of her significant learning difficulties. At the time that the agreement was sought, the mother was also being asked about consenting to medical treatment (for herself, which would be life-saving) and to pain relief including morphine (for herself).

There must obviously have been some reservations about whether the mother was in a position to give valid agreement to accommodate the child under s20 of the Children Act 1989, but the Court go beyond that, and into a discussion of whether a Local Authority can properly invite a parent to give s20 consent if the circumstances are not such that a Court would authorise separation, before concluding that they cannot.

Obviously, that’s quite a big deal, and is something fresh in law. A parent can still ask for s20 accommodation, for whatever reason, but if a Local Authority is asking a parent to agree to it, they run the risk of a human rights financial claim if they did not, at that time, have the sort of evidence that would persuade a Court to sanction removal/separation.

  Prior to this case, as a matter of strict law, the Local Authority did not need to even have reasonable grounds to believe that the threshold criteria are made out, let alone that there was a reasonable prospect of persuading a Court to sanction separation, in order to ASK a parent to agree to s20 accommodation.

I think that there are plenty of cases – the obvious type being a mother who has previously had four or five children removed, but where the concerns are neglect-based rather than a risk of physical harm, where obtaining an EPO would be difficult and usually the first question asked by the LA lawyer of the social worker is ‘is mum willing to agree to s20 accommodation’ – it seems to me that asking that question now carries with it a degree of risk.

 

(The emboldening of key passages is author’s own)

 

27. However, the use of Section 20 is not unrestricted and must not be compulsion in disguise. In order for such an agreement to be lawful, the parent must have the requisite capacity to make that agreement. All consents given under Section 20 must be considered in the light of Sections 1-3 of the Mental Capacity Act 2005.

28. Moreover, even where there is capacity, it is essential that any consent so obtained is properly informed and, at least where it results in detriment to the giver’s personal interest, is fairly obtained. That is implicit in a due regard for the giver’s rights under Articles 6 and 8 of the European Convention on Human Rights.

29. Having made those observations, it is necessary specifically to consider how that may operate in respect of the separation of mother and child at the time of birth. The balance of this judgment is essentially limited to that situation, the one that arose in this case, though some observations will have a more general application.

30. It is to be assumed (as was the fact in this case) that there were reasonable grounds for believing that the child and mother should be separated and that the officers of the authority honestly believed that there were such reasonable grounds. In those circumstances a removal could be lawfully effected in one of four ways under the 1989 Act: by agreement under Section 20, by emergency protection order under Section 44, by the police under Section 46 or under an interim care order pursuant to Section 38. This range of options was considered by the Court of Appeal in A – v – East Sussex C.C. and Another [2010] 2FLR 1596. That case was not concerned with a removal at birth but it does stress the need for minimum intervention and the need to work in partnership with parents.

31. There is reasonably clear authority in respect of the compulsive powers under the Act. It is clear that court orders are to be preferred to administrative action and so Section 44 is accorded primacy over Section 46 – see Langley -v- Liverpool C.C. and Another [2006] 1WLR 375 especially per Dyson LJ at paragraphs 35-40. The regime and criteria for the use of Section 44 is fully set out in ‘X’ Council -v- B [2005] 1FLR 341 and X (Emergency Protection Orders) [2006] 2FLR 701 both approved by the Court of Appeal in A (Supra). The Court of Appeal have repeatedly returned to the subject of removal under an interim care order; for example in Re G (Interim Care Order) [2011] 2FLR 955 the authorities are reviewed and the conclusion reached that the court must consider whether the child’s safety requires removal and whether removal is proportionate in the light of the risk of leaving the child where she was.

32. On the facts of this case, it is most unlikely that any order would have been granted on 1st February. In saying that, it is of course accepted that had either the hospital required the discharge of the child or had the mother tried to procure it, an order would no doubt have been made. As it was, the mother was unable to leave and the hospital were not requiring discharge and it is probable that they would not have done so at least until the mother was fit for discharge.

33. In those circumstances the child was in a place of safety in hospital. All parties accept that in consequence the police would have had no power to remove under Section 46 and no order would have been granted under Section 44. Moreover, given the pre-birth plan and the mother’s co-operation in hospital, it is hard to see how immediate removal could have been justified let alone actually authorised under an interim care order.

34. Although many local authorities have policies and internal guidance in place in respect of post birth removals, the researches of very experienced leading counsel have not uncovered specific guidance in respect of the use of Section 20. There is none in publicly available guidance nor in any reported decision of the court. Since this removal, which would not have been sanctioned by a court, was in fact effected by consent, it is perhaps not surprising that the court is being asked to consider the proper ambit of Section 20 in this specific context.

35. It is necessary to state one obvious point which does not arise in this case but which, if not stated, will at least be thought by those inherently suspicious of local authority power: namely that it can never be permissible to seek agreement to do that which would not be authorised by order soley because it is known, believed or even suspected that no such authorisation would be given and in order to circumvent that position. That would breach all requirements of good faith and of fairness.

36. As I have already said, however, there will be cases where it is perfectly proper to seek agreement to immediate post-birth accommodation. Three obvious examples occur: first, where the mother’s intention always has been and remains to have the child placed for adoption; secondly where a parent has always accepted that the child must be removed and has consistently expressed a willingness to consent (but not of course just to acquiesce); and thirdly, where a parent whether by reason of supervening physical health or personal circumstance positively seeks accommodation of the child by social services. There will of course be others and the right to exercise parental responsibility by requesting accommodation under Section 20 and the local authority’s powers of response under Section 20(4) must be respected.

37. However, and whatever the context, Section 20 agreements are not valid unless the parent giving consent has capacity so to do. It is important to note that by Section 1(2) of the 2005 Act a person is to be presumed to have capacity unless it is established that he lacks it. Moreover, the effect of Section 1(4) is to prevent inferences of incapacity from the making of unwise decisions. Incapacity must be due on a “…impairment of, or disturbance in the functioning of the mind or brain” – Section 2(1). Capacity is issue and situation specific. It follows that not only may a person have capacity to make one decision but not another but also may have capacity at one time to make the very decision in respect of which he lacks capacity at another.

38. That can be seen in the context of this case. The fact that the mother could make decisions about surgery and pain relief does not indicate that she could make decisions about the removal of her child. Again the fact that before the birth or sometime after the birth she could make decisions about removal does not mean she could on the day of birth. This latter factor (the impact of the birth itself) is the basis on which Parliament enacted for example Section 52(3) of the 2002 Act in respect of adoption and Section 54(7) of the Human Fertilisation Act 2008 in respect of surrogacy.

39. Capacity is not always an easy judgment to make, and it is usually to be made by the person seeking to rely on the decision so obtained. Sometimes it will be necessary to seek advice from carers and family; occasionally a formal medical assessment may be required; always it will be necessary to have regard to Chapter 4 of the Code of Practice under the 2005 Act. Assistance is, however, to be found in Section 3 of the Act which provides by subsection (1) that a person is unable to make a decision 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… 4) The information relevant to a decision includes information about the reasonably foreseeable consequence of – a) deciding one way or the other, or b) failing to make the decision.

40. Applying that to the facts of the case, the social worker was the person finally to decide capacity and she had the views of the midwives. The key judgments to be made were probably the mother’s ability to use or weigh information surrounding removal and whether she understood that, if she refused, the child would stay in hospital with her. The first of those illustrates why a decision to agree to life-sustaining surgery is wholly different to a decision to consent to removal of the child. It is also clear that her attention was not called to the second matter at all.

 

A reading of paragraph 36 suggests (and there may be other interpretations) that separating a baby from a parent shortly after birth by way of section 20 ought to be a decision driven by the parent (that they genuinely want the child to be accommodated), and not the Local Authority seeking to cajole, influence, persuade (or if you’re cynical) browbeat, the parent into it.

 

And by implication, that such a separation, if the parent is not actively driving it, ought not to be done by s20, but instead by a decision of the Court.

One might think, very fairly, that this is right and proper, and that a parent ought not to be separated from their child because they are weak-willed or haven’t twigged that they have the right to say no when being pushed towards agreeing s20 accommodation by a social worker.

I find it a little hard to disagree with that, to be honest, but it is worth noting that this is quite a departure from where the law was prior to this decision.

Previously, it was incumbent on the parent to not say ‘yes’ to the accommodation being proposed, and for the LA to either issue or allow the child to remain with the parent. NOW, it will be incumbent on the LA to issue if they want separation and to tread extraordinarily carefully in any conversation about s20 accommodation for a baby.

It seems to me, from reading this judgment, that it might be lawful for a social worker to ask (with a huge amount of care, to explain what it means and what the possible consequences are and that the parent can say no) “do you want to voluntary accommodate your child?”  but NOT  anything like “I think it would be a good idea for your child to stay in foster care, do you agree?”

 

(I suspect that to get the wording bullet-proof on this, you’ll need something like the Miranda waiver so beloved of American cop shows… and that it will be so cumbersome that most social workers will just decide not to ask the question)

I think that this passage in particular, will be vital reading for social workers, local authority lawyers, out of hours workers, and those who might be representing parents either in the hours after the baby is born, or when a case pitches up to Court where the parents ‘agreed’ separation.

46. The following can perhaps be offered as the more important aspects –

i) Every parent has the right, if capacitous, to exercise their parental responsibility to consent under Section 20 to have their child accommodated by the local authority and every local authority has power under Section 20 so to accommodate provided that it is consistent with the welfare of the child.

ii) Every social worker obtaining such a consent is under a personal duty (the outcome of which may not be dictated to them by others) to be satisfied that the person giving the consent does not lack the capacity to do so.

iii) In taking any such consent the social worker must actively address the issue of capacity and take into account all the circumstances prevailing at the time and consider the questions raised by Section 3 of the 2005 Act, and in particular the mother’s capacity at that time to use and weigh all the relevant information.

iv) If the social worker has doubts about capacity no further attempt should be made to obtain consent on that occasion and advice should be sought from the social work team leader or management.

v) If the social worker is satisfied that the person whose consent is sought does not lack capacity, the social worker must be satisfied that the consent is fully informed: a) Does the parent fully understand the consequences of giving such a consent? b) Does the parent fully appreciate the range of choice available and the consequences of refusal as well as giving consent? c) Is the parent in possession of all the facts and issues material to the giving of consent?

vi) If not satisfied that the answers to a) – c) above are all ‘yes’, no further attempt should be made to obtain consent on that occasion and advice should be sought as above and the social work team should further consider taking legal advice if thought necessary.

vii) If the social worker is satisfied that the consent is fully informed then it is necessary to be further satisfied that the giving of such consent and the subsequent removal is both fair and proportionate.

viii) In considering that it may be necessary to ask: a) what is the current physical and psychological state of the parent? b) If they have a solicitor, have they been encouraged to seek legal advice and/or advice from family or friends? c) Is it necessary for the safety of the child for her to be removed at this time? d) Would it be fairer in this case for this matter to be the subject of a court order rather than an agreement?

ix) If having done all this and, if necessary, having taken further advice (as above and including where necessary legal advice), the social worker then considers that a fully informed consent has been received from a capacitous mother in circumstances where removal is necessary and proportionate, consent may be acted upon.

x) In the light of the foregoing, local authorities may want to approach with great care the obtaining of Section 20 agreements from mothers in the aftermath of birth, especially where there is no immediate danger to the child and where probably no order would be made.