Tag Archives: capacity

Parents seek an injunction to prevent child having gender affirming treatment

The court dismissed the parents’ applications, finding there was no evidence that EE at age 17 lacked capacity and no evidence that she sought imminent treatment. There was no ‘matter’ before the court to undertake an assessment of capacity. This case has provoked controversy about the extent to which any person who wants to remove healthy parts of their body can be said to have ‘capacity’ but the parents’ legal action appeared doomed at the outset on the basis of the evidence they presented and their obvious hostility to ‘LGBT’.

I use she/her pronouns for EE as she is female.

Judgment was handed down by Mr Justice MacDonald in September 2023 in the case of GK and LK v EE (formerly RK).

The facts

EE’s parents applied to court in June 2023 under the inherent jurisdiction and via the Court of Protection under the Mental Capacity Act 2005 (MCA) with regard to their 17 year old daughter, who turned 18 shortly after the judgment. EE self identifies as a non binary lesbian and at the time was in the care of the local authority via section 20 accommodation. The parents wanted to instruct experts to assess her capacity and asked for an injunction preventing EE from having any kind of gender affirming medical treatment, arguing that she lacked capacity to make decisions about this.

EE and the local authority told the court that the parents were driven by prejudice against EE’s gender identity and pointed out that EE had no current plans for any medical treatment. Therefore, the court had no ‘matter’ under the MCA to make any decision.

Further, there was no sufficient evidence to rebut the presumption that EE had capacity under section 1(2) of the MCA. EE’s GP records contained no diagnosis of mental illness. The parents claimed EE had been diagnosed with ‘schizoptypal disorder’ by a psychiatrist in country X, from which the family originated, moving to the UK when EE was three.

EE could not recall speaking to any foreign psychiatrist and had received no medication. She alleged that her parents had been physically and emotionally abusive to her, which they denied. But there were police records that in July 2022 EE was assaulted by her parents who ‘did not like’ that she was ‘LGBT’. She asserted that she had tried to talk to her parents about this since she was 11, but they were very hostile and she gave up aged around 13/14.

There was a child protection medical and EE was found to have non accidental injuries, but there was no mention of any mental health issue or personality disorder in any of the reports at the time. A child protection conference followed, the parents now asserted that EE was undergoing a psychotic episode. EE returned home in August on the basis that there would be no further physical or emotional abuse from her parents.

But EE then discussed with her parents the desire to have ‘top surgery’ i.e. a double mastectomy to remove her breasts. The parents asked her to postpone any decision until she was 25 and EE asserts that they became increasingly controlling, insisted she undergo online therapy and persistently made homophobic/transphobic comments. The local authority undertook a Child and Family Assessment, with no concerns for EE’s mental health. By November 2022 matters had seriously degenerated to the point that EE’s father attempted to restrain her and she hit him. EE then agreed to be accommodated by the local authority.

The parents were very unhappy with this situation and asserted that the local authority had referred EE to Mermaids and was encouraging her to take testosterone. EE had a further medical assessment in February 2023 which raised no concerns and recorded a significant improvement in EE’s mood and outlook since leaving home. She expressed gender dysphoria, but had no current plans to engage in medical treatment.

The parents argued that EE lacked capacity to make decisions about any such treatment and relied upon the Cass Review that social transition should not be seen as ‘neutral’. The parents asserted that the wider paternal family had a history of mental health issues, EE had self harmed, used a binder, abused alcohol and drugs and these issues along with others showed that EE was unable to retain, use and weigh relevant information relating to gender affirming treatment. Therefore experts were needed to assess her.

The law

EE was 17 at the relevant time but was very close to 18, when the court would cease to have jurisdiction under the inherent jurisdiction. Therefore, the judgment focused on the legal principles under the MCA. This Act allows the court to make decisions in the best interests of those aged over 16 years, if they are found to lack capacity to make their own decisions. Section 1 of the MCA sets out its key principles – a person is assumed to have capacity, and cannot lack capacity just because he makes an unwise decision.

EE could only lack capacity if her inability to make decisions was due to ‘an impairment of, or a disturbance in the functioning of, the mind or brain‘ and due to this she could not understand information relevant to the decision, retain the information, use or weigh the information, or communicate her decision. Capacity is assessed in relation to the specific decision at the time the decision needs to be made.

Therefore the court couldn’t make any decisions under the MCA as there was no ‘matter’ to be decided; EE had no current plans for any gender affirming treatment. Even if there had been a ‘matter’ before the court, not only does the MCA presume capacity, EE had ‘legal capacity’ under section 8 of the Family Law Reform Act 1969 which sets up a rebuttal presumption that 16 year olds can consent to medical treatment.

The court examined the interplay between the MCA, FLRA and ‘Gillick competence’ in para 48, approving the position that a child under 16 must be found ‘Gillick competent’ to provide consent to medical treatment. Once the child is 16, their legal capacity is assumed and their mental capacity is examined under the MCA. Thus, absent any evidence that EE lacked capacity, she could at 17 make a decision to have gender affirming treatment. There was no need for any expert evidence.

The court noted at para 60 the kind of evidence it would need to engage with the applications made by the parents

In the absence of any gender affirming treatment being proposed at
this time, the court does not have before it any evidence as to what such treatment involves, what the potential dangers and side effects of such treatment are, the nature and extent of the preparatory counselling with respect to the decision to have, and the consequences of, gender affirming medical treatment and any assessment of the treating clinicians of EE’s capacity to consent to such treatment.

Comment

The court did not make a finding that the parents considered EE mentally ill simply because of her stated sexuality and identification as ‘non binary’ but did comment at para 67 that the court was left with the ‘distinct impression’ that this was the case.

I agree that the evidence is sparse to suggest that gender affirming care has long term positive benefits. I agree it is sad to see EE assert (para 36)

I have thought about gender reassignment for many years, and it is
something that has always been on my mind. I feel quite strongly about this, and I am of the view that my real life would begin once I undergo Bilateral mastectomy, also known as top surgery.

If in fact her ‘real life’ does not begin after the removal of her breasts then of course it is too late to reverse the surgery. It does not seem likely that EE is able at 18 to confidently foresee how she would feel about the amputation of her breasts when she is 30, alongside her possible infertility if she begins taking testosterone.

Many who objected to this decision on social media appeared to share the parents’ views that simply to claim a ‘non binary’ identity or want to remove healthy breasts, was in and off itself evidence of ‘profound mental illness’ that rendered EE incapable of making any decisions about gender affirming care.

But it is not the court’s place to prohibit an entire regime of medical or surgical treatment without compelling evidence. The courts have to place trust and reliance in the medical profession to stick to its own code of conduct. If EE has capacity, and can find a willing surgeon, she has the freedom to make unwise choices. I do not see how the court could have made any other decision on the evidence and the law before it.

I understand that many people were unhappy with this decision, but any changes to the culture around ‘gender identity’ and affirmative treatment will have to come from Parliament and the medical profession. My hope is that the final report of the Cass Review will continue to support therapeutic interventions as first call. If parents do wish to assert that their children lack capacity to make decisions about gender affirming care, then they are going to need to bring hard evidence to the court proceedings, which these parents could not.

While I personally think it is very sad that a young woman would ever contemplate drastic and irreversible surgery so that her ‘real life’ could begin, the simple response is that it is not my life, nor my breasts. EE may well regret such surgery when she is older, but the MCA exists to protect the freedom to make unwise choices. If asked to choose between ‘freedom to’ and ‘freedom from’, I choose the first, every time. And I must extend that freedom to all others with capacity.

What does ‘Best Interests’ mean in the Mental Capacity Act 2005?

 

How do we make decisions for people who can’t make them for themselves?

There are very many reasons why a person may lack capacity. This can be a condition present from birth or as a result of an accident. It can be enduring or it can be intermittent. All these circumstances will inform a decision about what is in the best interests of the person lacking capacity at any given time.

How to make decisions for people who lack capacity is particularly difficult when a person has an enduring lack of capacity and there is little evidence about their wishes and feelings. Theses cases raise the starkest issues around what ‘best interests’ should really mean. This is particularly so when we examine the extent to which ‘substituted judgment’ still forms part of the decision making process.

 

Different ways we can make decisions for people or ourselves

Advance decisions – MCA section 24 – 26

It is possible to set out your wishes when you still have capacity with regard to refusing medical treatment.  But this is a very limited field; it only applies to a decision made in advance to refuse treatment; it does not give you the right to demand any other form of care.

Lasting power of attorney – MCA section 9

If you are over 18 and have capacity at that time, you can choose someone who will make decisions for you, should you lose capacity in the future. This person then has authority to make decisions about your personal welfare and property affairs. taking into account your wishes but making a decision using the best interests framework.

You can also make a written statement about your wishes and feelings which would be considered as part of the best interests decision making process but which would not have any legal authority.

 

Decision making before the MCA

Parens patriae and substituted judgment

Until 1959  the ancient doctrine of ‘parens patriae’ set out the legal basis for making decision on behalf of incapacitated adults. It means ‘the parent of the country’ and conferred on the Crown a power to protect the person and property of those who could not protect themselves.  The exercise of this power transferred from the Crown to the chancery courts in the seventeenth century.  It is not easy to discern how this power was exercised in early cases, but it is clear that the focus was meant to be on protecting the person who lacked capacity.

The Mental Health Act of 1959 abolished this jurisdiction. Unfortunately the new Act provided a framework for decisions to be made about financial matters, but did not set out how to deal with welfare issues, such as decisions about medical treatment.

The House of Lords in Re F [1990] 2 AC 1 decided that the way round this was to invoke the inherent jurisdiction and the doctrine of necessity to make declarations regarding the lawfulness of proposed medical interventions for those who lack capacity.  However, that does not deal with the cases where ‘necessity’ is not the issue but a choice needs to be made between competing welfare aims.

Substituted judgment

‘Substituted judgment’ is one way of making decisions, by trying to make the choice that the person would have made, if they had the capacity to do so.

The test of ‘substituted judgment’ was part of the parens patriae jurisdiction with regard to financial/property issues, a landmark decision being that of Re Hinde in 1816 where Lord Eldon argued that the Court ‘looking at what it is likely the Lunatic himself would do, if he were in a capacity to act, will make some provision out of the estate for those persons.’

However, the obvious criticism of this method of decision-making is the enormous difficulty in trying to make a decision that a person ‘would have made’ if that person has never been competent and never expressed a view. Not only can that lead to contorted ‘reasoning’ but there is a clear danger is that it is instead the views of the decision maker, which will come to the fore, such views being formed by all the prejudice and assumptions of that person.  This is particularly dangerous if the decision maker has some personal investment in any particular outcome.

 

The view of the Law Commission

The Law Commission Consultation Paper No. 119 (1991) (Mentally Incapacitated Adults and Decision-Making: An Overview) considered the ‘best interests’ and the ‘substituted judgment’ tests as two conceptually distinct standards. Not only is there is a different historical development and scope of application between the two tests, but also the ‘best interests test is ‘more paternalistic and restrictive’ and emphasizing what the decision maker thinks is objectively best for the patient.

The Law Commission preferred the ‘best interests test’ due to the difficulties inherent in substituted judgement but recognized that the ‘distinction between the two tests may be little more than a matter of language.’

 

Example from case law – ‘best interests’ before the MCA

Re A (medical treatment: male sterilisation) [2000] 1 FLR 259.

This case involved a 28 man who had Down’s syndrome and a severe impairment of his intelligence.  He was cared for by his mother who made an application under the inherent jurisdiction hat he should have a vasectomy despite his inability to consent to the operation. This was in case he had a sexual relationship that would result in the birth of a child, as he could not understand the implications of this. A was sexually aware and the mother was conscious that given her age and health she would not be able to provide him with care for much longer and he would have to go into institutional care. She was worried about what would happen once he was no longer subject to her close supervision.

The court at first instance refused to permit this so the mother appealed saying that a vasectomy should be seen as ‘fool proof’ contraception and that was of benefit to A which outweighed the risks of a surgical procedure.

The Court of Appeal carried out a close analysis of the ‘best interests’ of A and considered that:

  • The concept of best interests is not limited to best medical interests, but includes medical, emotional and all other welfare issues.
  • A’s freedom would not be more restricted if he did retain his fertility, he would still be under close supervision.
  • A vasectomy would not reduce the risk that A could be exploited or contact a STI.
  • The issue of the impact of pregnancy upon his mother or the woman who was pregnant was not a relevant consideration in terms of his best interests, as his relationship with his mother would continue. The birth of a child or anyone disapproving of his conduct was not going to impinge on him.
  • The operation would cause him risk and discomfort.

Thorpe LJ set out guidance on how to evaluate what is in an individual’s best interests. He said that it is ‘akin to a welfare appraisal’ and that the judge should draw up a balance sheet. The balance sheet should consider the benefits and disbenefits of the decision and the likelihood of each occurring.

Pending the enactment of a checklist or other statutory direction it seems to me that the first instance judge with the responsibility to make an evaluation of the best interests of a claimant lacking capacity should draw up a balance sheet.  The first entry should be of any factor or factors of actual benefit.  In the present case the instance would be the acquisition of foolproof contraception.  Then on the other sheet the judge should write any counterbalancing dis-benefits to the applicant

I suggest this approach only because Sumner J’s judgment in the present case seems to me to concentrate too much on the evaluation of risks of happenings, some of which seem to me at best hypothetical. A risk is no more than a possibility of loss and should have no more emphasis in the exercise than the evaluation of the possibility of gain.

This case is a useful demonstration of the dangers inherent in ‘substituted judgment’ as it was clear from the mother’s evidence that she was also motivated by a profound distaste for the idea that anyone should have sex without being married. Issues around disabled people enjoying their sexuality are often very difficult for many people to contemplate and it is not hard to see how those inherent prejudices could infect any attempt by a decision maker to work out what was in the best interests of the particular individual.

 

Mental Capacity Act 2005 approach to best interests

Therefore, those drafting the Mental Capacity Act plainly rejected the notion of ‘substituted judgment’ and took on board Thorpe LJ’s hope of a statutory checklist.

The Act requires decision-makers to consider the views and preferences of the person who lacks capacity. However, section 4(6)(a) of the Act makes it clear that it is only one of the factors to be taken into account because some people have simply never been in the position to express any views about the issue to be decided.

The Act is designed to direct the focus away from the personal views of the decision maker and direct attention to both the current and future interests of the person who lacks capacity.

Section 1 of the MCA sets out that 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 and 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.”

The Act does not attempt a definition of best interests – which is certainly impossible given the infinitely variable circumstances, which can arise. Instead, section 4 sets out a framework for making a decision in someone’s best interests.

You should consider ‘all relevant circumstances’ which is defined under section 4(11) as those which the person making the determination is aware, and which it would be reasonable to regard as relevant.  The statute provides further guidance about what is likely to be a ‘relevant circumstance’, such as whether it is likely that the person will have capacity at some time and when that time is likely to be.

You must so far as is reasonably practicable permit and encourage the person to participate or improve his ability to participate as fully as possible in the decision making process.

If you are considering life sustaining treatment you must not be motivated by a desire to bring about the person’s death.

You must consider so far as is reasonably ascertainable;

  • The person’s past and present wishes and feelings, in particular whether there is a previous written statement made when he had capacity
  • The person’s beliefs and values that would be likely to influence his decision if he had capacity

The Act is also clear about what is NOT a relevant circumstance. Under section 4 (1) (a) and (b). You cannot make a best interests determination merely on the basis of:

  • The persons age or appearance
  • A condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about what might be in his best interests.

Under section 4(7), you must take into account, if practicable and appropriate to consult them, the views of anyone the person identified as someone who ought to be consulted and anyone who is caring for the person or interested in their welfare, which includes anyone with a power of attorney and any deputy appointed by the court.

 

Recent Case Law on Best Interests

The reality is however, that we simply can’t escape an element of substituted judgment in those cases where we have no evidence about the wishes and feelings of the incapacitous person – either because they have never been capable of expressing the same or have never expressed an opinion on the issue in question prior to becoming incapacitous.

In Re X,Y and Z [2014] EWHC 87 (COP) is a neat illustration of how to examine ‘best interests’ when we have little or no idea what P would say about the situation. In this case a mother of three children had suffered a RTA that left her profoundly disabled and with an altered personality. This lead to the children suffering serious emotional harm whilst living in the same household with her and the LA decided that this situation could no longer endure and the children should go into foster care.

All agreed that it would be the best outcome for the children if their current nanny could be that foster carer; all agreed she was doing an excellent job, the children were attached to her and there would be no risk of splitting up the sibling group.

However, the mother’s situation was dire; the money awarded to her for her care after her RTA was running out and she had a normal life expectancy. This was a problem because the nanny was requesting a salary on top of the foster care allowances the LA would pay. Without a salary the nanny would no longer be able to pay into her pension or maintain her own flat which made her prospects on retirement look bleak.

The mother’s deputy thus argued that it was not in the mother’s best interests to secure the services of this nanny, as it would lead to the quicker depletion of her fund.

Baker J considered the case law regarding ‘best interests’ from paragraph 27 of his judgment. He derived the following principles:

  • There is no hierarchy between the various factors that have to be considered. But in some cases there may be a factor of ‘magnetic importance’ in determining the outcome – see the judgement of the then Munby J in Re M ITW v Z and Various Charities [2009] EWCH 2525 (Fam).
  • ‘interests’ is not confined to ‘self interest’ – a court can conclude that it is in the interests of P to act altruistically. See observation of Morgan J in Re G (TJ) [2010] EWCH 3005 (COP).
  • P’s wishes and feelings and the beliefs and values that will be likely to be influence her decision if she had capacity must be considered by the court so far as reasonably ascertainable.  They are not determinative but must be considered as part of the overall best interests analysis.  The weight to be attached to this factor will always be case-specific and fact-specific.
  • In assessing the weight to be attached to P’s wishes and feelings the court must have regard to all the relevant circumstances.

In considering this issue of ‘relevant circumstances’ Baker J set out and relied upon the observations of Munby J in Re M (op cit) at para 35:

the degree of P’s incapacity, for the nearer to the borderline the more weight must be in principle be attached to P’s wishes and feelings….

the strength and consistency of the views being expressed by P;

the possible impact on P of knowledge that her wishes and feelings are not being given effect to

the extent to which P’s wishes and feelings are, or are not, rational, sensible, responsible and pragmatically capable of sensible implementation in the particular circumstances; and

crucially, the extent to which P’s wishes and feelings, if given effect to, can properly be accommodated within the court’s overall assessment of what is in her best interests.  

Substituted Judgment – still relevant

Baker J was clear that the test under the 2005 Act was materially different from the test of ‘substituted judgments’ and agreed that the new approach was more akin to the ‘balance sheet’ approach.

But this does not mean that issues of substituted judgment have disappeared from our deliberations.  Baker J referred to how Morgan J traced the evolution of the best interests test in Re G (T) (op cit) by examining the judgments of the Court of Appeal and House of Lords in Airedale NHS Trust v Bland [1993] AC789 (in particular the judgment in the Court of Appeal of Hoffmann LJ) and the report of the Law Commission 231 which proceeded the passing of the 2005 Act.  It was the view of both the Law Commission and Hoffman LJ in Bland that substituted judgment can be subsumed within the context of best interests’

Baker J cited paragraph 55 of the judgment of Morgan J, where he observed:

The best interests test involves identifying a number of relevant factors. The actual wishes of P can be a relevant factor: s4(6) (a) says so. The beliefs and values which would be likely to influence P’s decision, if he had capacity to make the relevant decision, are a relevant factor: s4(6) (b) says so. The other factors that P would be likely to consider if he had the capacity to consider them, are a relevant factor: s4(6)(c) says so. Accordingly, the balance sheet of factors, which P would draw up, if he had capacity to make the decision, is a relevant factor for the court’s decision. Further, in most cases, the court will be able to determine what decision it is likely that P would have made, if he had capacity. In such a case, in my judgment, P’s balance sheet of factors and P’s likely decision can be taken into account by the court. This involves an element of substituted judgment being taken into account, together with anything else, which is relevant. However, it is absolutely clear that the ultimate test for the court is the test of best interests and not the test of substituted judgment. Nonetheless, the substituted judgment can be relevant and is not excluded from consideration.

 

By applying these considerations, Baker J was able to conclude ‘without hesitation’ that it was in the mother’s best interests to authorize payment to the nanny to take on the care of the children.

He observed at paragraph 45:

I accept that the court has power under the 2005 Act to approve payments for the maintenance or other benefit of members of P’s family, notwithstanding the absence of an express provision to that effect in the Act, provided such payments are in P’s best interests. Such payments might be called altruistic, but are more characterised as falling within the broad meaning of the concept of “best interests” under the Act. Where a parent loses mental capacity at a time when she is still responsible for her children, those responsibilities are part of her “interests” which have to be addressed by those making decisions on her behalf, and payments to meet the reasonable needs of those children are manifestly capable of being described as in her “best interests” on all the circumstances, applying the criteria in the Act….

Plainly P’s wishes and feelings are of great importance in determining whether in these circumstances it would be in her best interests for payments to be made. She has expressed the wish that her funds should be used in support of the children. It is said that, in expressing that view, she does not appreciate the fact that her own care needs are now costing more than her income. In my judgment, however, were she to have a full understanding of the shortfall, she would nevertheless support the payment of sums to S to safeguard the future of her children, preferring to make savings in the costs of meeting her own care needs. The new arrangement will significantly reduce the sums being paid towards the children out of her estate, and as a result the deputy and those responsible for managing her affairs will have greater flexibility in adjusting arrangements to enable her to make savings. I find that P’s wishes and feelings are, in the words of Munby J Re M, ITW v Z at paragraph 35, “responsible and pragmatically capable of sensible implementation in the circumstances” and “can properly be accommodated within the court’s overall assessment of what is in her best interests.

Conclusions

This can appear to be a convoluted and artificial exercise. For many inacpacitous people who have never expressed a view about their circumstances, and never will, it seems likely that what we will end up doing is simply imposing what we think is the best thing for them.

It’s clear that we get limited guidance from the case law as each case turns on its own facts – for example, some cases are clear that the ‘best interests’ of P cannot extend to considering what is best for anyone else, whereas in other cases the impacts of the decision on others becomes a factor of key importance.

But the value of the Act is that it forces us into a framework where we really have to stop and think about what we are doing and check our own assumptions.  As Lady Hale made clear in Cheshire West – this is simply about ensuring that disabled people have the same respect for their human rights as everyone else.  The scales will always tip back and forth between potentially excessive paternalism and a wish to protect to recognition of the right of us all to make unwise decisions.  In an imperfect world all we can do is recognize the requirements – and the limitations  – of the task in front of us.

Otherwise we end up in a situation such as Somerset v MK (Depravation of Liberty : Best Interests Decisions : Conduct of a Local Authority) [2014] EWCOP B25, where HHJ Marston commented at para 74 of his judgment:

The overall summing up by the senior social work manager was: “There has been a corporate failure and a failure of those on the ground to realise that they are out of their depth, most worrying was that they looked more sure about what they were doing than they ought, it’s going to be difficult to re-establish that trust (with the family) if its rebuilt it is going to be with good practice.” Mr Justice Ryder (as he then was) in a leading authority on FII cautioned social workers in child care cases not to decide what the picture was and then make the facts fit the picture, it seems to me that is what happened here.

Further Reading

An interesting case where it was found that a woman had a right to refuse treatment as her life had ‘lost its sparkle’ – see Kings College Hospital NHS Foundation Trust v C and Another [2015] and this discussion of the case by Lucy Series

 






The Social Worker tells me my child needs medical treatment?

This post looks at the legal and practical difficulties parents may face if they disagree with doctors or social workers about the medical treatment their child needs.  Doctors cannot examine or treat anyone without getting consent, unless the situation is life threatening and urgent. Medical intervention can range from the trivial to the really serious and the further up the scale of intervention you go, the more likely you are to encounter disagreements about the best way forward. Who gets to decide and how?

The case of Ashya King

For more detail about Ashya King’s case see this post from the Transparency Project.

The  issue of managing disagreements between parents and doctors came to the fore in September 2014 with the case of Ashya King,  a five year old boy who was being treated for cancer in the UK. His parents and the hospital could not reach agreement about the best treatment options for Ashya; his parents removed him from the UK to seek treatment abroad and were then arrested after the hospital informed the police and the local authority (LA) of their disappearance.

The LA applied for Ashya to be made a ward of court, which meant that no decision could be taken about his treatment without permission from the court. Upon arrest, Ashya’s parents were kept apart from their son for several days. The case caused enormous concern both in the UK and internationally. Of particular concern is the parents’ view that they had no choice but to leave in the way they did as they were alarmed by the hospital suggesting that the LA would need to get involved, even to apply for an emergency protection order. It is clear that the working relationships between the parents and the doctors must have seriously deteriorated, if not broken down completely.

When the case came before Baker J on September 8th he discharged the wardship. He found that the earlier decision to make Ashya a ward of court was justified on the information that the court had before it. But now the position had changed; there was a clear treatment plan which was not opposed by either the LA or Ashya’s guardian. The Judge could not comment on the desirability of issuing a European arrest warrant which resulted in the parents’  detention, but commented that it was clearly not in Ashya’s best interests to have been separated from his parents.

So what happens if you disagree with the treatment proposed by professionals?

The importance of consent.

The fundamental principles of consent were discussed in the case of A (Children) [2000]. Every adult person of sound mind has the right to say what can and can’t be done to his body. Without consent, medical examinations or procedures are unlawful – they are either the criminal offence of assault or the civil offence of trespass to the person. Therefore it is very clear that consent must be given to any kind of treatment or examination unless its an emergency and doctors say they had to act out of ‘necessity’.

Consent is only valid if it is:

  • voluntary – given freely;
  • informed – understanding the implications of consenting;
  • and the person giving it has capacity – they are capable of making decisions.

Who does not have capacity?

A ‘child’ is defined in the Children Act as a person between the ages of 0-18 years, but it’s really important to distinguish between children who are 16 and older as 16-17 year olds can provide consent to treatment as if an adult.

  • Children under 16, unless found to be  ‘Gillick competent’  do not have the capacity to consent to treatment.  A child will have capacity only if he or she is able to understand the nature, purpose and possible consequences of the treatment proposed. For a useful discussion of issues that arise around understanding and capacity see the article about transgender children in Further Reading below. 
  • Adults or children over 16 years, may not have capacity as defined by the Mental Capacity Act 2005,  if they can’t make their own decisions because of some problem with the way their brain or mind is working. This could arise due to illness, disability or exposure to drugs/alcohol. It doesn’t have to be a permanent condition.

An example of a situation where an adult was found not to have capacity to consent to medical treatment, is the ‘forced C-Section’ case of 2013 (see P (A Child) [2013) where the pregnant mother was experiencing serious mental health difficulties and the hospital were concerned about the risks of a natural birth in such circumstances.

Who do doctors ask if the patient doesn’t have capacity?

They will need to get:

  • consent from someone who has parental responsibility (PR) for the child; or
  • permission from the court in the case of an adult who lacks capacity or where there is a dispute between adult carers of the child.

Parental Responsibility

Parental responsibility is defined at section 3 of the Children Act 1989. The British Medical Association (BMA) ethics guidance from 2008 describes PR in these terms:

  • Parental responsibility is a legal concept that consists of the rights, duties, powers, responsibilities and authority that most parents have in respect of their children. It includes the right to give consent to medical treatment, although as is discussed below, this right is not absolute, as well as, in certain circumstances, the freedom to delegate some decision-making responsibility to others. In addition, competent children can consent to diagnosis and treatment on their own behalf if they understand the implications of what is proposed (see below). Those with parental responsibility also have a statutory right to apply for access to the health records of their child, although children who are mature enough to express views on the issue also need to be asked before parents see their record. Parental responsibility is afforded not only to parents, however, and not all parents have parental responsibility, despite arguably having equal moral rights to make decisions for their children where they have been equally involved in their care.

In theory, doctors only need consent from one person with PR to go ahead with treatment. However this will rarely be a wise course of action if there are strong objections from others who have involvement in the child’s upbringing. The best ethical option in cases of dispute, is  to apply to the court  for an order to either allow or refuse the treatment in question.

An example of such application to court can be found in the case of Neon Roberts, whose parents disagreed about the best way to treat his cancer. Parents may also disagree about specific medical interventions, such as circumcision or blood transfusions on religious grounds.

While the parties are waiting for a court decision regarding treatment, doctors should only provide emergency treatment that is essential to preserve life or prevent serious deterioration of health.

If the doctors consider that by refusing consent to treatment you are not acting in your child’s best interests, they will need to raise this issue with the LA who may need to consider issuing care proceedings.

Further information for doctors and patients.

The British Medical Association (BMA) publishes guidelines and can be contacted for advice.

  • BMA members may contact: 0300 123 1233 or British Medical Association Medical Ethics Department BMA House, Tavistock Square, London WC1H 9JP Tel: 020 7383 6286 Email: [email protected].
  • Non-members may contact: British Medical Association Public Affairs Department BMA House, Tavistock Square, London WC1H 9JP Tel: 020 7387 4499 Email: [email protected]

What if I am sharing PR with the LA?

If a care order has already been made then you share PR with the LA. It is clear that it would be unwise for doctors to feel they need only seek permission from the LA, particularly if the proposed treatment is significant. Efforts should always be made to reach agreement, particularly if the proposed medical intervention is not going to involve significant impact on a child’s bodily integrity.

If you don’t feel able to agree to relatively simply medical procedures or assessments, that may raise question marks in the minds of the professionals about how you are discharging your parental responsibility. It is not difficult to see how such situations can spiral out of control (as in the case of Ashya King above) with parents being very suspicious of doctors and vice versa. As ever, good communication is the key; if you are worried about a particular procedure, say so and say why. Ask for further explanation and discussion.

If agreement just isn’t possible, again applying to court may be the only option. The LA cannot simply make any decision they like even when they do share PR under a care order. They can only act when it is ‘necessary’ to safeguard or promote the child’s welfare. See section 33(4) of the Children Act 1989 and considerations of proportionality under Article 8 of the ECHR. The LA also remain under a duty to consult parents before making any serious decisions about a child who is subject to a care order. 

See this case from 2013 where Kingston on Hull City Council were subject to a successful judicial review of their failure to consult parents. The Judge made clear at paragraph 58 his views about the duty to consult:

  • I have made it clear that there is a duty upon a local authority to consult with all affected parties before a decision is reached upon important aspects of the life of a child whilst an ICO is in force. I have been shown the guidance issued by HM Government to local authorities in 2010 [The Children Act 1989 Guidance and Regulations] where there is valuable material available to social workers about how to approach their difficult task in this regard. Paragraph 1.5 provides (inter alia): “Parents should be expected and enabled to retain their responsibilities and to remain closely involved as is consistent with their child’s welfare, even if that child cannot live at home either temporarily or permanently.” … “If children are to live apart form their family, both they and their parents should be given adequate information and helped to consider alternatives and contribute to the making of an informed choice about the most appropriate form of care.”

Principles of law when there is disagreement about the treatment a child needs.

If it is not possible to reach agreement, the court will have to make a decision about what kind of treatment/intervention is in the best interests of the child. Baker J set out the relevant principles to be applied in such cases (see para 29 of his judgment in September 2014):

  • The child’s welfare is the most important issue before the court ;
  • The court must also have regard to the child’s rights under the ECHR; most pertinently the right to life under Article 2 and the right to respect for family and private life under Article 8;
  • Responsibility for making decisions about children rests with the parents and the state should only interfere if the child is suffering or at risk of suffering significant harm.

For consideration of how the court should approach a case when doctors wish to stop giving life sustaining treatment to a seriously ill child, see the case of Kirklees Council v RE  [2104].

Further reading

Children of Jehovah’s Witnesses and adolescent Jehovah’s Witnesses: what are their rights? BMJ 2005

Girl of 13 allowed to refuse heart transplant – The Independent November 2008

Parents with child in care cannot object to the LA deciding to immunise their child, using section 33 of the Children Act – The Guardian April 2020

In Who’s best interests? The transitioning of preschool children – Sarah Phillimore October 2019

Transgender Children: limits on consent to permanent interventions Heather Brunskell-Evans January 2020

GIDS deploys three Gillick Competence criteria to assess whether a child under 16 can give informed consent.

The first criterion is that the child has the mental capacity to fully understand the likely consequences, both positive and negative, of her decision-making. However, she or he is not psychologically competent to assess the likely consequences of a complex and contested medical area whose future ramifications will have little or no meaning. Not only are all the long-term impacts of hormone therapy unknown to clinicians themselves, a child will have little or no cognisance of a future in which she or he will become a medical patient for life, may come to regret lost fertility (including, for example, the lack of breasts, ovaries and uterus), and the lack of organs for sexual pleasure.

Moreover, the information given by GIDS to children is simply not factual. For example, children are told that hormone blockers will make them feel less worried about growing up in ‘the wrong body’ and will give them more time and space to reflect. This reassurance is contradicted by GIDS’ own recognition that research evidence demonstrates that after one year young people report an increase in body dissatisfaction; rather than giving the opportunity to change their minds children almost invariably proceed to cross-sex hormones.

The Mental Capacity Act 2005

Care proceedings may involve parents who are said to ‘lack capacity’. In this post we will discuss what that means and what are the implications for the care proceedings.

The Law – the Mental Capacity Act 2005

The Mental Capacity Act came into force in 2007 and provides a statutory framework for people who lack capacity to make decisions for themselves, or who want to prepare for possibly losing their capacity in the future.

It sets out who can take decisions for people who lack capacity, in which situations, and how they should go about this  There is a Code of Practice that needs to be read along side the Act. The Act covers England and Wales and applies to everyone who is over 16 years of age.

You must keep this Act separate from the Mental Health Act 1983 – that Act deals with people who have been diagnosed with a mental  health problem that is so serious they pose a risk to themselves or other people and therefore they need to be detained and treated, even if this is against their will.

The Mental Capacity Act applies to everyone who looks after someone who lacks capacity to make particular decisions for themselves. This includes social workers and doctors, as well as family or professional carers.

 

Key principles of the MCA

These are set out at section 1 of the Act.

  • Presumption of Capacity. All adults have the right to make decisions for themselves unless it can be shown that they are unable to make them. You can’t assume someone can’t make decisions just because they have a particular disability.
  • Maximising Decision Making Capacity. Everyone should be given all the help and support they need to make a decision before anyone concludes that they cannot make their own decision. For example, some people with learning disabilities find it much easier to understand information that is presented in pictures, rather than lots of words.
  • Right to be Unwise. Making an unwise or eccentric decision doesn’t automatically mean you lack capacity; people are allowed to make decisions that others might think unwise.
  • Best interests. Any actions taken or decisions made on behalf of someone who lacks capacity must be done in their best interests, after considering what is known about their preferences. Try to involve the person who lacks capacity as much as possible.
  • Least Restrictive Option. People who lack capacity should not be restricted unnecessarily; when making decisions for someone else you need to be careful to examine if what you are doing poses the least interference with that person’s freedoms.

 

The Court of Protection

It was established by section 45 of the MCA.  It can:

  • decide whether a person has capacity to make a particular decision for themselves;
  • make declarations, decisions or orders on financial or welfare matters affecting people who lack capacity to make such decisions;
  • appoint deputies to make decisions for people lacking capacity to make those decision;
  • remove deputies or attorneys who fail to carry out their duties.

The Court of Protection Rules of 2007 have been amended by new rules which come into force in April and July 2015 – see this blog post by Lucy Series which discusses the important changes they make to issues of transparency and participation.

See further the website www.courtofprotection.com for more information and discussion.

 

What does ‘lack of capacity’ mean?

An inability to make decisions

Someone is said to lack capacity if they can’t make their own decisions because of some problem with the way their brain or mind is working. This could arise due to illness, disability or exposure to drugs/alcohol. It doesn’t have to be a permanent condition.

There is an interesting post here by suesspicious minds about someone who was said to lack capacity due to his alcoholism; the court heard evidence from a variety of sources and decided that he did have capacity. 

If you ‘lack capacity’, to make a certain decision, this is more serious than just being unable to make up your mind or finding a particular decision difficult; someone who lacks capacity will generally find it hard to understand information, retain it or weigh it up and then communicate their decision to someone else.

Lack of capacity is defined in section 2 of the MCA:

(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.

Section 3 of the MCA sets out what is meant by an inability to make decisions. A person is considered unable to make a decision for himself if he is unable:

  • to understand the information relevant to the decision,
  • to retain that information,
  • to use or weigh that information as part of the process of making the decision, or
  • to communicate his decision (whether by talking, using sign language or any other means).

A person is not to be regarded as unable to understand the information relevant to a decision if he is able to understand an explanation of it given to him in a way that is appropriate to his circumstances (using simple language, visual aids or any other means).

If a person ‘lacks capacity’ to take part in legal proceedings, that doesn’t necessarily mean they can’t make any decisions at all – it may depend on the seriousness and complexity of the decision before them. For example, a decision about what to have for lunch is much less taxing than a decision about what instructions to give your lawyer in court.

The leading case discussing the test to determine capacity remains Masterman-Lister [2003]. The test of capacity which was identified here has been incorporated into the MCA 2005.

 

I am told I need an assessment of my capacity – what does this involve?

An assessment of someone’s lack of capacity is covered at para 4.38 of the Code of Practice. This is an important issue which needs to be dealt with quickly as it can have serious consequences for care proceedings, both in terms of necessary assessments and the fairness of the court process. The court should consider issues of capacity at the earliest opportunity. Your lawyer is under an obligation to raise this issue as soon as they have any doubts about your capacity to instruct them.

The court does not require expert evidence from a psychologist or psychiatrist in order to make a decision that you do or do not have capacity, but these experts are often asked to provide an assessment.

However, if it is very clear a person lacks capacity – due to being in a coma for e.g. – then the court is likely to be satisfied by just a letter from the treating doctor.

The Code of Practice considers the necessary practical steps for someone who is assessing capacity . The assessor must understand what the person being assessed is asked to decide about. The assessor must also bear in mind the five principles of the MCA as set out above and start from the presumption that the person has capacity.

The assessor should explain all the information relevant to the decision. The explanation must be in the most appropriate and effective form of communication for that person.

See para 4.49 of the Code of Practice.

  • Check the person’s understanding after a few minutes. The person should be able to give a rough explanation of the information that was explained. There are different methods for people who use non- verbal means of communication (for example, observing behaviour or their ability to recognise objects or pictures).
  • Avoid questions that need only a ‘yes’ or ‘no’ answer (for example, did you understand what I just said?). They are not enough to assess the person’s capacity to make a decision.
  • But there maybe no alternative in cases where there are major communication difficulties. In these cases, check the response by asking questions again in a different way.
  • Skills and behaviour do not necessarily reflect the person’s capacity to make specific decisions. The fact that someone has good social or language skills, polite behaviour or good manners doesn’t necessarily mean they understand the information or are able to weigh it up.
  • Repeating these steps can help confirm the result.

The British Medical Association publish a useful interactive tool to help doctors assess a patient’s capacity.

 

What follows from an assessment that you lack capacity

Appointment of a ‘litigation friend’

In family proceedings, if a person is found to lack capacity then they become a ‘protected party’. and they will need a  ‘litigation friend’ who will conduct the proceedings on their behalf.

See Part 15 of the Family Procedure RulesPractice Direction 15A and Practice Direction 15B and this guidance.

According to the Practice Direction, a litigation friend must

fairly and competently to conduct proceedings on behalf of a protected party. The litigation friend must have no interest in the proceedings adverse to that of the protected party and all steps and decisions the litigation friend takes in the proceedings must be taken for the benefit of the protected party.

Anyone can be a litigation friend, as long as they can meet the requirements of the rules and Practice Directions. The requirement that you must  not have an interest in the proceedings which might be against the interests of the protected party may mean it is not sensible to have a close family member acting as a litigation friend – see the case of P v Nottingham in 2008, discussed below,  where the mother’s parents and brother had put themselves forward as litigation friends but were also putting themselves forward to care for her child. The court held they should not have been appointed.

The Official Solicitor

The court may invite the Official Solicitor to act as the litigation friend.  The Official Solicitor provides access to the justice system to those who are vulnerable by virtue of their young age or lack of mental capacity.

However, it should be noted that the OS’s department has only about 20 lawyers and 40 caseworkers. It has very little spare capacity. Therefore,  the OS should only be invited if there is no other person suitable or willing to act.

Court of Protection rules

 Part 17 of the Court of Protection 2007 rules which governed the appointment of litigation friends in the Court of Protection has now been replaced by the Court of Protection (Amendment) Rules 2015.

Lucy Series describes the impact of these amendments:

The amended rules now allow a person to be represented by an ‘accredited legal representative’ or even just a ‘representative’ without a litigation friend. An accredited legal representative is defined as ‘a legal representative authorised pursuant to a scheme of accreditation approved by the President to represent persons meeting the definition of “P” in this rule in proceedings before the court’. So presumably the President will shortly announce a scheme of accreditation for certain lawyers who can represent the relevant person without taking instruction from a litigation friend. I would be really interested to see whether this may lead to changes in how they represent the person – for example, will we see a move towards a more adversarial model, like that adopted in the Mental Health Tribunals, where representatives basically argue for what the person wants and not for what they don’t want, rather than arguing for what (in their view) is in the person’s best interests?

Can I still give evidence in my case if I am found to lack capacity?

See para 1.4 and 1.5 of the Practice Direction.

Where the court determines that a party does not have capacity to conduct the proceedings, the court may well also have to determine whether that party is able to give evidence and if so whether ‘special measures’ are required. Expert evidence is also likely to be necessary for the court to make such determinations. However, as in relation to the question of litigation capacity, the court may consider that evidence from a treating clinician who has a good understanding of the party’s difficulties may be sufficient. If the treating clinician is provided with information about the legal framework, the clinician may be able to provide that evidence more readily and more quickly than an expert instructed to give an opinion as to the party’s ability to give evidence.
Where the protected party is able to give evidence, the representative will wish to consider (and ask the expert to consider) the impact on that party of giving evidence. When making a determination as to whether that protected party should give evidence, the court may need to consider whether the impact of giving evidence would be so adverse to their condition that it would not be in that party’s best interests to do so. The representative may put forward an argument on behalf of the protected party that the protected party should not give evidence.

 

I don’t agree I ‘lack capacity’ – what can I do?

Capacity can fluctuate over the course of proceedings. See para 4.1 of the Practice Direction 15B:

Litigation capacity may be lost or regained during the proceedings as a result of deterioration or improvement in the impairment of, or disturbance in the functioning of, the party’s mind or brain. The necessity for expert evidence or evidence of a treating clinician as to a party’s capacity can therefore arise at any time during the proceedingsThe assessor should give reasons why they believe the person lacks capacity to make the decision, and provide objective evidence to support that belief. The assessor must also show they have applied the principles of the Mental Capacity Act.

Therefore, even if you were assessed at the start of proceedings as lacking capacity, you could argue that the situation has now changed.

If you simply don’t accept the first assessment, It might be possible to get a second opinion from an independent professional or another expert in assessing capacity. Chapter 15 of the Code of Practice offers other suggestions for resolving disagreements over the issue of capacity, such as mediation. But this may not be practicable if you are in care proceedings and decisions have to be made quickly. Your best option may be simply to apply to the court to get another assessment.

 

Restrictions on freedom of movement under MCA

What are the Mental Capacity Act 2005 Deprivation of Liberty Safeguards?

An important question is whether or not living arrangements made for someone who is mentally incapacitated amount to a ‘deprivation of liberty’. If they do, that deprivation has to be authorised.

The Deprivation of Liberty Safeguards (DoLs) set out in the MCA apply to anyone in a care home or hospital.  These provide an independent check on whether or not these arrangements are made in the best interests of that person.  If the person is living somewhere other than a hospital or care home, the Court of Protection must authorise that placement.

As Lady Hale said in the Cheshire West case (which we discuss below):

It is merely a recognition that human rights are for everyone, including the most disabled members of our community and that those rights include the same right to liberty as everyone else.

DoLs were introduced by the MCA after the UK was found to be in breach of Article 5 of the ECHR in 2004.  Article 5 protects people’s right not to be deprived of their liberty unless this is due to a small number of limited circumstances, such as being convicted of a crime.

The safeguards involve:

  • an independent assessments of a person’s capacity to consent to care arrangements and consideration of what is in their best interests.
  • those being assessed are entitled to assistance from a representative, an independent advocate and non-means tested legal aid to appeal against their detention in the Court of Protection.

 

What does ‘deprivation of liberty’ mean?

EDIT – The Government on 14th March 2018  published its response to the Law Commission’s Mental Capacity and Deprivation of Liberty report. The headline is that the Government “agree[s] in principle that the current DoLS system should be replaced as a matter of pressing urgency,” and that it will legislate in due course. Before the introduction of any new system, the Government has said that it will “need to consider carefully the detail of these proposals carefully and ensure that the design of the new system fits with the conditions of the sector, taking into account the future direction of health and social care.”

The circumstances in which someone can be said to be ‘deprived’ of their liberty have caused much discussion and debate, particularly when considering people who would end up with restrictions placed on their freedoms wherever they went, to stop them hurting themselves.

This issue finally got before the Supreme Court in 2014 in the case of Cheshire West. The court decided that the essential questions they needed to ask were:

  • Is the person subject to continuous supervision and control?
  • Is the person free to leave?

It was NOT relevant to the issue of whether or not someone had been deprived of their liberty to say that they did not object or they were living in a relatively ‘normal’ placement. As Lady Hale said in paragraph 46 of her judgement in Cheshire West:

…But, as it seems to me, what it means to be deprived of liberty must be the same for everyone, whether or not they have physical or mental disabilities. If it would be a deprivation of my liberty to be obliged to live in a particular place, subject to constant monitoring and control, only allowed out with close supervision, and unable to move away without permission even if such an opportunity became available, then it must also be a deprivation of the liberty of a disabled person. The fact that my living arrangements are comfortable, and indeed make my life as enjoyable as it could possibly be, should make no difference. A gilded cage is still a cage.

For a different view about the philosophical arguments that underpin our understanding of what makes a ‘deprivation of liberty’ see the judgment of Mostyn J in Rochdale MBC v KW [2014] discussed here at the Mental Capacity Law and Policy blog. The Judge commented at paragraph 7 of his judgment that he found it impossible:

…to conceive that the best interests arrangement for Katherine, in her own home, provided by an independent contractor, but devised and paid for by Rochdale and CCG, amounts to a deprivation of liberty within Article 5. If her family had money and had devised and paid for the very same arrangement this could not be a situation of deprivation of liberty. But because they are devised and paid for by organs of the state they are said so to be, and the whole panoply of authorisation and review required by Article 5 (and its explications) is brought into play. In my opinion this is arbitrary, arguably irrational, and a league away from the intentions of the framers of the Convention.

At paragraph 17 he set out his fundamental disagreement with the majority of the Supreme Court:

It is clear that the driving theme of the majority opinions is a denunciation of any form of discrimination against the disabled. With that sentiment I naturally wholeheartedly agree. Discrimination is found where like cases are not treated alike. However, when making Lord Kerr’s comparison you do not have two like cases. You are comparing, on the one hand, a case where an 18 year old does not need protection and, on the other, a case where the 18 year old does. They are fundamentally dissimilar. The dissimilarity justifies differential treatment in the nature of protective measures. For me, it is simply impossible to see how such protective measures can linguistically be characterised as a “deprivation of liberty”. The protected person is, as Mill says, merely “in a state to require being taken care of by others, [and] must be protected against their own actions as well as against external injury”. And nothing more than that. In fact it seems to me to be an implementation of the right to security found in Article 5.

Mostyn J remains bound by the decision of the Supreme Court. However, The Law Commission are currently reviewing this area of law around deprivation of liberty and hope to report by 2017. The report will consider how deprivation of liberty should be authorised and supervised in hospitals, care homes and community settings, where it is possible that Article 5 rights would otherwise be infringed. This will include considering the legislation underpinning DoLS in its entirety. 

 

Further reading