Fluctuating capacity, the “longitudinal approach” and practical dilemmas

November 20, 2024

David Lock KC asks whether a “longitudinal approach” to when decisions can lawfully be made by patients with fluctuating capacity is consistent with the Mental Capacity Act 2005 (“the MCA”) and, if it is not, whether there is a better framework that could be used to enable decisions to be taken to protect this vulnerable class of persons using the inherent jurisdiction.

The MCA sets out clear tests which are required to be used to determine whether, at the time the decision falls to be taken, a person (“P”) has capacity to make a specific decision for herself [1]. P can only lack capacity if “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]. Hence, as is well known, there is a diagnostic test and a functional test. The diagnostic test is that P must have an “impairment of, or a disturbance in the functioning of, the mind or brain”. S2(2) MCA provides 'It does not matter whether the impairment or disturbance is permanent or temporary.'

The MCA requires causation between that impairment or disturbance and the ability to take decisions, applying the functional test. The functional test is in s3(1) MCA, namely that the impairment of, or a disturbance in the functioning of, the mind or brain must lead to the person being unable to make the relevant decision for herself because she 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 her decision (whether by talking, using sign language or any other means). Any capacity decision which empowers another person to take health and care decisions for P can only be both time specific and issue specific [3].

In the recent Supreme Court case of JB [4], Lord Stephens [5] said at para 64:

“Capacity may fluctuate over time, so that a person may have capacity at one time but not at another. The “material time” within section 2(1) is decision-specific (see para 67 below). The question is whether P has capacity to make a specific decision at the time when it needs to be made. Ordinarily, as in this case, this will involve a general forward-looking assessment made at the date of the hearing. However, if there is evidence of fluctuating capacity then that will be an appropriate qualification to the assessment”

The Law Commission said as follows in their 2017 report at para 9.38:

“The legal framework for assessing capacity set out in sections 1 to 3 of the Mental Capacity Act (summarised from para 3.4) is relatively straightforward and easy to understand. These provisions reflect the principle that capacity is decision-specific and must be assessed in relation to the particular decision that needs to be taken, rather than any assessment being made of the person’s ability to make decisions generally. It follows that a person may lack capacity in relation to one matter but not in relation to another. Capacity is also time-specific and must be assessed at the time the decision needs to be made”.

However, the report goes on to accept that, although the MCA provides a set of rules that have to be applied in all cases, the Act does not directly engage with how this mandated approach should be applied in the management of a patient with fluctuating capacity. It states:

“9.39 However, in practice the capacity assessment can sometimes be extremely difficult, especially when the person’s capacity fluctuates so that he or she has capacity at some times but not at others. A person with fluctuating capacity may be inconsistent and unreliable in their decision-making. There are different situations where fluctuating capacity may occur, for example as a result of mental illness, dementia or an acquired brain injury.

9.40 Fluctuating capacity is not a concept expressly addressed or provided for in the Mental Capacity Act (including the DoLS). The Mental Capacity Act Code of Practice recognises that steps that should be taken to support a person with fluctuating capacity to take their own decision by, for instance, choosing the time of day at which they are most alert. However, it does not indicate what should happen where an assessment is required of a person’s ability to make decisions on an ongoing basis as regards a particular matter”.

How can the MCA principles assist in managing cases of fluctuating capacity?

Some assistance in how to approach the situation where P has fluctuating capacity can be gained from the principles in S1 MCA which provide:

“(2) A person must be assumed to have capacity unless it is established that he lacks capacity.

(3) A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.

(4) A person is not to be treated as unable to make a decision merely because he makes an unwise decision”.

There is no basis to seek an exemption from these provisions in a case where P has fluctuating capacity and thus they must be applied in such a case.

The Code of Practice builds on these principles by suggesting that where P has fluctuating capacity, P should be supported to make as many decisions for herself as possible and that, if possible, decisions should be delayed from a time when a person lacks capacity to a time when she has capacity [6].

What are the real-world dilemmas?

However that guidance does not really assist in a real world situation where P suffers from a long term mental health condition, often accompanied by learning difficulties, where she has good days and bad days. P may, for example, often be able to understand matters sufficiently to make her own decisions but will stray into incapacity if her mental health cyclical condition is at a stage where it dominates her thinking or she becomes dysregulated due to stress, conflict or any number of conditions. This problem has arisen in a number of cases where a paradox emerges. As long as P is subject to a strict management regime which imposes a degree of control over where she can go, what she can do and who she can interact with, P remains generally calm and is sufficiently calm that she will have capacity to make many of her own decisions.

However, if these restrictions are lifted, P may come into contact with circumstances which will (or may well) lead her to become stressed, dysregulated or otherwise sufficiently upset that she will lose her calmness, the underlying effects of her mental health may take over and she will start being unable to think clearly, and thus lose capacity.

If P agrees to the restrictions designed to avoid her coming into situations where she may become dysregulated, then there is little difficulty. But, in practice, those with caring responsibilities for her may feel that restrictions on her freedom need to be imposed to protect her from situations where she may expose herself of real dangers, even if she does not consent. This situation is relatively common in practice but it potentially legally complex.

Given the framework of the MCA, it appears to give rise to a classic “catch-22”. As long as P is subject to imposed restrictions, she will remain calm and hence retain capacity; but in those circumstances any restrictions which are imposed based on an assumed lack of capacity cannot be justified because, at that time, P will have capacity to make her own decisions. It thus follows that, applying the framework of the MCA, decisions cannot be taken for P in her best interests to prevent her leaving a placement, prevent her meeting up with unsuitable “friends” or going out on her own because she has capacity at that point to make her own decisions.

It may be seriously “unwise” for P to choose to put herself in a position where she may come into danger or trigger her mental health condition and thus lose capacity, but s 1(4) MCA provides that “a person is not to be treated as unable to make a decision merely because he makes an unwise decision”. However it is nonsensical for care staff to have to sit by, watch P put herself in danger and only have the right to intervene to protect P from herself after she has become dysregulated.

How have judges grappled with the dilemma of managing patients with fluctuating capacity?

Judges at first instance have grappled with this dilemma but, as far as the author is aware, the Court of Appeal have never been asked to provide specific guidance on the subject. In RB Greenwich v CDM [7] Cohen J considered a case where a woman had a range of physical and mental health conditions and, as a result, had fluctuating capacity to make care and treatment decisions for herself. He said:

“Paragraph 4.4 of the Code of Practice says that an assessment of a person's capacity must be based on their ability to make a specific decision at the time it needs to be made and not their ability to make decisions in general”.

Thus, the Judge decided that a decision had to be made by care staff on each occasion, depending on her presentation at that time. However, he also said (in relation to medical treatment for her diabetes) “that when making appropriate decisions she has capacity but when making manifestly inappropriate decisions she lacks capacity”. Thus, in effect, care staff were given permission to override any refusal of treatment if the care staff member thought this was a “manifestly inappropriate decision”. That decision was clearly consistent with the structure of the MCA and the Code of Practice in looking at each decision separately.

The case of CDM came back before the High Court in 2019 [8] when there was further evidence, but still evidence of fluctuating capacity. The Official Solicitor urged Wood J to make an overall assessment that CDM lacked capacity in relation to her care needs. The Judge refused to that approach. He said at para 46:

“Each treatment has to be looked at in its own individual context as opposed to a global context. CDM is unique, her position is self-evidently unique, to her.”

However, given the new evidence, the judge felt able to conclude that this was not a case of fluctuating capacity largely because CDM’s ability to use and weigh information about her care options was not able to understand all of the information needed to make decisions and was unable to use or weigh such information as she did understand because she was overwhelmed in that decision making process by the effects of her mental disorders. Thus, the Judge concluded that this was not a case of fluctuating capacity but he appeared to be clear that a general declaration of lack of capacity could not be made where P had genuine fluctuating capacity.

That approach was also followed by Cobb J in Wakefield District Council and another v DN [9]. This was a case where the evidence identified the clinical indicators which suggested that P was becoming dysregulated and hence my lose capacity. The Declaration was as follows:

“[DN] has capacity to make decisions regarding his residence and care and treatment arrangements, except when presenting in a state of heightened arousal and anxiety ("a meltdown") during which episodes it is declared that he lacks capacity to consent to care and treatment provided by the applicants, their staff and/or agents.

In circumstances where the applicants, their staff and/or agents reasonably believe that [DN] is experiencing a state of heightened arousal and anxiety / meltdown (the triggers for which are more fully described in the attached care plan), and as such [DN] lacks capacity to make decisions about his care and treatment arrangements, it shall be in [DN]'s best interests for the applicants, their staff and/or agents to deliver care and treatment to DN in accordance with the care plan annexed to this Order.”

The Order thus provided guidance to care staff as to how to make specific decisions as to whether P lacked capacity.

The alternative “longitudinal” approach

A different approach to a case where P had fluctuating capacity was taken in Cheshire West and Chester Council v PWK [10] by Hedley J. The Judge explained the factual background at para 9 as follows:

“When PWK was relaxed and in a good place he might well be regarded as having capacity. However, when he became anxious his position could be very different. Moreover, there were many things that could trigger anxiety and quite often his carers would be confronted with irrational behaviour that could be difficult to manage.”

The Judge observed at para 15 “There will be many occasions when PWK is hampered by anxiety when those grounds are clearly made out. However, that will not always be the case. It may fluctuate. The question is how the law deals with that”.

The Judge referred back to an earlier decision of his, A,B & C v X, Y & Z [11] and said:

“18. In paragraph 41 of the judgment I expressed myself as follows:

'In the light of Dr Posser's evidence, I am satisfied on balance that he lacks capacity to manage his own affairs. In so finding I acknowledge, as I have done in relation to the other matters, that there would be times when a snapshot of his condition would reveal an ability to manage his affairs. But the general concept of managing affairs is an ongoing act and, therefore, quite unlike the specific act of making a will or making an enduring power of attorney. The management of affairs relates to a continuous state of affairs whose demands may be unpredictable and may occasionally be urgent. In the context of the evidence that I have, I am not satisfied that he has capacity to manage his affairs.'

19. Some have referred to this as taking a longitudinal view. In my view, this approach has the value of clarity. It establishes that the starting point is incapacity. The protection for the protected person lies in the mandatory requirements of Section 4 , in particular subsections (3) and (6) …”

Hedley J is a supremely wise and practical Judge and the real benefits of this “longitudinal view” for carers who have to manage a person with fluctuating capacity are plain.

The challenge of what orders to make in relation to a case where P has fluctuating capacity was considered recently by Mrs Justice Lieven in A Local Authority v PG and others [12]. At paragraph 9 the Judge noted the evidence that “When PWK was relaxed and in a good place he might well be regarded as having capacity. However, when he became anxious his position could be very different. Moreover, there were many things that could trigger anxiety and quite often his carers would be confronted with irrational behaviour that could be difficult to manage”.

Lieven analysed the evidence with her usual clarity saying at para 34:

“In respect of both care and contact with others there are times when the evidence suggests that she does have capacity to make decisions and others when she does not, therefore this is undoubtedly a case of fluctuating capacity. The fluctuations appear to depend on the level of PG’s anxiety and whether she feels under stress. The situation is made even more complicated by the fact that when PG is in the community, her decision making may also be influenced by the consumption of alcohol. This is, of course, not a ground for finding a lack of capacity under the MCA [13].”

The Judge then said at para 36:

“I am really faced with a choice between making orders that follow the line of Sir Mark Hedley in PWK, and thus taking a “longitudinal view” of PG’s presentation, and which closely relates to Newton J’s “macro” decisions; or that of Cobb J in DN and making anticipatory declarations in respect of when PG has the equivalent of a “meltdown”.”

I would suggest that a close reading of Mr Justice Newton’s decision suggests that he refused to make a “macro-decision” in a case of genuine fluctuating capacity but, in contrast, was satisfied in that case that the evidence showed that CDM did not have fluctuating capacity. Hence, Newton J’s decision probably closer supports the approach taken by Cobb J and Cohen J as opposed to the approach taken by Sir Mark Hedley.

Lieven J then raised arguments to support the Hedley approach, saying:

“37. .. It is a fundamental principle of the European Convention on Human Rights and the Strasbourg jurisprudence that the Rights should be interpreted in a way which makes them real and practical, not theoretical and illusory. It is a principle of statutory construction that the Court must have regard to the “mischief” of the statute. One of the mischiefs of the MCA is to seek to preserve an individual’s autonomy, but in a way that ensures that when they do not have capacity, their best interests are protected.

38. My concern about making an anticipatory declaration in a case such as this, is that it would in practice be unworkable for those caring for PG. Unlike DN, PG does not have capacity in relation to decisions around her care, both when at home and in the community. Although when calm, she does at times make capacitous decisions within the meaning of section 3(1), I accept Dr King’s evidence that even when at home, when she becomes anxious and emotionally dysregulated, she loses capacity. This seems to me to be a more fundamental part of her general presentation than was the case with DN.”

The Judge then analysed the evidence and said at para 43:

“In the light of these findings, I consider that the appropriate approach is to take the “longitudinal view”. An anticipatory order would in practice be close to impossible for care workers to operate and would relate poorly to how her capacity fluctuates. The care workers would have to exercise a complicated decision making process in order to decide whether at any individual moment PG did or did not have capacity. This might well vary depending on the individual care worker, and how much of the particular episode they had witnessed or not. The result would fail to protect her, probably have minimal benefit in protecting her autonomy and in practice make the law unworkable.”

Can a “longitudinal view” approach be reconciled with the MCA?

Whilst accepting the benefits of clarity taken by taking a longitudinal view, there are a series of potential difficulties in reconciling that approach with the wording of the MCA, and suggest that the MCA wording must have priority. These difficulties do not appear to have been drawn to the attention of Mrs Justice Lieven and thus she cannot possibly be criticised for not having engaged with the potential difficulties of taking a “longitudinal view” in the way suggested by Sir Mark Hedley.

The first difficulty is that the consequence of the decision is, as the Judge accepted, that, in a case where the Judge acknowledges that P will have capacity at times and lack capacity at times, the effect of the order is that carers are able to approach any particular situation from the starting point of incapacity. Hedley J was frank in saying that “It establishes that the starting point is incapacity”. That approach reverses the statutory presumption in s1(1) MCA which states that a person must be presumed to have capacity. Given the acknowledgement in these cases that P will have times when he or she has capacity, it is hard to see how decision makers could approach a case lawfully if they are required to reverse the statutory presumption.

Secondly, whilst it is clear that a “longitudinal view” can be justified in assessing whether P has an impairment of the mind or brain (since those are decisions about long term mental conditions), it is less clear that it can be justified when applying the functional test. The Supreme Court in JB and Court of Appeal in York City Council v C have confirmed that an MCA decision can only be made on someone’s behalf at a particular moment in time if there is causation at that point in time between the impairment of the mind or brain and the inability of P to take a particular decision. If, at that point, P has capacity for that decision (applying the presumption) then the statutory scheme provides that no carer or relative should acquire power to take a decision on P’s behalf. An order which takes a longitudinal approach to the application of the functional test as opposed to decision specific view focused on that point in time appears to conflict with the statutory scheme, as interpreted by the appeal courts.

Thirdly this approach appears to conflict with S5(1) MCA which provides that the decision maker, “D”, will only escape liability for a care or treatment decision if D “takes reasonable steps to establish whether P lacks capacity in relation to the matter in question”. That test appears to require a carer to ask themselves a separate question in relation to each separate decision as opposed to relying on a longitudinal view which reverses the statutory presumption.

Lastly, the Judge’s reliance on the importance of P’s views in the s4 decision making process is arguably misplaced. If P has capacity on a particular issue, P should be recognised as the relevant decision maker. The scheme of the MCA and the recognition of P’s article 8 rights means that no one is entitled to act as a decision maker on P’s behalf, and thus s4 procedure can have not relevance to that prior question. Following the s4 procedure cannot turn an unlawful decision into a lawful decision because that procedure should not have been used in the first place.

The practical and inevitable consequence of this approach in carers will inevitably take decisions on P’s behalf when, if they had assessed P’s capacity for that specific decision, they would have concluded that P had capacity and thus P and not D should be the decision maker.

So what is the proper solution where P has fluctuating capacity?

If, with regret, the longitudinal approach is not a permissible way to proceed under the MCA because it is not compatible with the statutory scheme, there appear to be two alternatives. The first is for an order to describe the way that carers should approach decision as to whether, on that day and in respect of that decision, P has capacity. That was the approach taken by Cobb J [14] in Wakefield District Council and another v DN. That approach is consistent with the MCA but has two potential shortcomings. First, it is complex for care staff since they have to make capacity decisions on a day-to-day basis. There is, in a typical case, real merit in the concerns raised by Lieven J about this type of approach.

Secondly, it does not provide a proper answer to the person with fluctuating capacity who makes unwise decisions which lead them into circumstances where they may well lose capacity and put themselves or others in danger.

A possible alternative approach in a proper case would be for the High Court to make use of the inherent jurisdiction to protect vulnerable adults with capacity arising from cases such as Re: SA (Vulnerable adult with capacity: marriage) [15]) and Re DL [16], albeit it will extend far beyond the concept of “'elder abuse” referred to by the (now) President at para 63 of the latter judgment. Whilst I have been critical of the jurisprudence that was relied on to develop this aspect of the common law [17], invoking this jurisdiction to impose a series of restrictions on the freedoms of those with capacity to act as they wish is now a clearly established part of our common law and, absent a decision from the Supreme Court, it may be a legitimate route for those with caring responsibilities for vulnerable adults to use to seek to ensure they are acting lawfully in seeking to balance freedoms and protections.

Judges have rightly been circumspect about its use to impose orders which are, in effect, directed against P: see for example Hayden J at paragraph 36 of London Borough Redbridge Council v SNA [18]who observed that "it is to be used sparingly", Cobb J in Redcar and Cleveland BC v PR [19] who doubted at para 43 that it could be used to injunct P and Lieven J in Croydon v KR [20] who suggested that it should be reserved for only "truly exceptional cases."

Hence, even if it is difficult to justify orders under the MCA for persons with fluctuating capacity, an alternative route using the inherent jurisdiction is far from straightforward. But the principles identified by the Court of Appeal in Re DL appear to be directly applicable to a vulnerable patient with fluctuating capacity where restrictions are justified to prevent the patient putting themselves in significant danger.

It is possible that, in a significant number of such cases, the restrictions on P will result in P being deprived of their liberty and thus the case may well have to be referred to the High Court in any event. Even if P is accommodated in either hospital or a care home, a Standard Authorisation cannot be given under Schedule A1 MCA unless the decision maker is satisfied that P lacks capacity [21]. Any such case would have to be examined carefully on its merits to ensure that any restrictions on P’s freedom were genuinely proportionate to the risks to P and wholly justified by the need to prevent P coming to serious harm.

It thus seems that, properly examined, there may be serious difficulties in justifying the longitudinal approach in the case of a person with fluctuating capacity under the MCA. Using the inherent jurisdiction to impose a lawful set of constraints on the freedoms of a person with fluctuating capacity is also not without its difficulties but it may, depending on the precise circumstances, be the most appropriate way to ensure that carers can both respect the principles of the MCA and also introduce a measure of certainty so as to allow them to take appropriate action to ensure that vulnerable adults do not come to serious harm.

David Lock KC is a specialist practitioner in this area. He has advised NHS bodies for 20 years, is one of the authors of NHS Law and Practice with Hannah Gibbs and is a visiting professor in practice at the London School of Economics.

Footnotes

[1] In this article P will be referred to as “her”. The principles are equally applicable to a male P.

[2] S2(1) MCA.

[3] See York City Council v C [2014] Fam 10.

[4] [2022] AC 1322, [2022] 3 All ER 697, [2021] UKSC 52

[5] Speaking for the whole court.

[6] See para 3.12 to 3.16 of the Code of Practice.

[7] [2018] EWCOP 15.

[8] [2019] 4 WLR 130.

[9] [2019] EWHC 2306 (Fam)

[10] [2019] EWCOP 57.

[11] [2012] EWHC 2400 (COP).