Brain Injury and Mental Capacity assessments

Dr Shabnam Berry-Khan from Psychworks Associates and social worker Eleanor Tallon discuss mental capacity assessments and share their insight around what professionals should consider to complete a suitable assessment

Assessing mental capacity is often a complex and difficult task, and this can be even more so when a person presents with a brain injury. In case management, understanding capacity is core to our work yet with the complexities it brings, we need to be sure we are refreshed and updated in our knowledge. After all, the Mental Capacity Act 2005 (MCA) was designed to empower people who require decision-making support, and protect the autonomy of those who may lack the capacity to make their own decisions – a huge responsibility in the quest to get the best quality of life we can for our clients.

Dr Shabnam Berry-Khan, clinical psychologist, Advanced BABICM case manager and founding director of PsychWorks Associates, collaborates with Eleanor Tallon, a registered independent social worker, accredited best interest assessor (DoLS BIA) and founder of MCA Professional. Together they unpick the practical considerations around mental capacity assessment and share some useful tips, discussing how compassion and open-mindedness are integral to a robust and legally compliant MCA.

A quick ‘refresh’ first

An assessment of mental capacity is a process (as set down by law), which basically examines whether a person can make their own decision on a specific matter. A mental capacity assessment (MCA) is required if, after steps have been taken to support the decision-making process, there is a reasonable belief that the person may lack capacity. 

For it to be concluded that the person lacks capacity on the decision in question, it must be evidenced that they are unable to understand, retain, weigh, or communicate the relevant information, and that this is directly caused by a mental impairment or disturbance of mind.

For the purposes of the MCA, the mental impairment might result from conditions including dementia, severe mental illness or brain injury. Though it has been confirmed in a recent judgment North Bristol NHS Trust v R [2023] that a formal diagnosis isn’t necessary.

So what do you need to consider to provide a good capacity assessment? 

• It starts and ends with the desire to build a therapeutic relationship even if it’s a one-off piece of work for you – it’s their life to a client.

Shabnam describes a capacity assessment decision as a deep-dive into a client’s life as gleaned from the client themselves, others known to the client and objective data. For many, a capacity assessment can be felt like an intrusion into their life where an important decision may not be possible for them to make on their own. This can be the most frightening of propositions for some clients, especially if they do not know you as an assessor. Building a relationship with a client is essential in supporting psychological safety for any client feeling anxious about a capacity assessment. 

Helping a client feel at ease and explaining the process and what you have done and what you plan to also do (possibly several times over or even if other professionals may have done so already) will go a long way. A client will want to know you care about the impact the decision will make on their life and that you will assess their ability to make their own decision in a way that’s fair and evidence based. Even if the outcome is not the desired outcome, by demonstrating respect, compassion and care towards the client, will help them trust the outcome more.

If possible, feeding back your decision to the client can be a really positive way to end a one-off assessment or to close the process down therapeutically if they are a client you provide on-going input to. The chances are the client will experience a number of capacity assessments in their life and it is important each clinician gives each client a positive experience of capacity assessments each time. 

• Accessing a good quality Initial Needs Assessments (INAs) will cue you in to ways to communicate in a client-centred way

You need to ask, from a trauma-informed perspective, how will I make this an easy experience and not add to any challenges the client is already experiencing? 

There are steps that we take right from the beginning to ensure that we engage with the client in a respectful way. As a case manager, that starts with the initial needs assessment. We need to have a good understanding of the client’s communication level, their cognition and other aspects of their presentation that will affect the assessment. It might be that the individual can only tolerate five minutes of an assessment, or they may be entirely nonverbal. A good INA will give you good clues as to how to set up an assessment well.

• Have you clearly presented the relevant factors to the decision?

Eleanor talks about making sure an assessment is fair to the person. To achieve this, you need to make the relevant information accessible and share it in a way that the person can understand. At times that can be really tricky and needs even more planning. In cases where individuals previously had, for example, a severe stroke, and have limited verbal and non-verbal communication. You’ll need to be very creative around that, using alternative communication like using pictures and photos, and drawing upon speech and language therapy colleagues for further tips and advice. Without these adjustments the person would be incredibly disadvantaged.

The functional assessment must be approached first, this was decided in the judgment of A Local Authority v JB [2021], so initially you need to establish whether the person has the functional ability to make the specific decision. But the first and most important thing is identifying the relevant factors that contribute to the decision. 

The starting point is to work out what does this person needs to know to be able to make this particular decision? Case law will help to set the foundations as to what might be relevant, but there will be individual circumstances to consider, each and every time.

A good assessment involves background research and extensive preparation, including reflecting on what is specifically relevant to the person’s situation. Do not be surprised if you end up learning new things along the way.

Of course, to assess someone’s capacity, you don’t need to be an expert on the decision, just like the person doesn’t need to be an expert to have capacity to make the decision themselves. An assessor just needs to be able to go through the relevant information in layman’s terms, so that they can support the client to have a chance of exercising their autonomy, where possible. 

• Complexities in presentation – do you know enough about the frontal lobe paradox?

There may be contributing factors to someone’s capacity that aren’t immediately obvious and being able to identify and explore presentations of executive dysfunction, the frontal lobe paradox (FLP), is crucial.

Shabnam highlights that FLP – also known as the knowing-doing dissociation – is a phenomenon where clients with injuries to their frontal lobe, the part responsible for thinking, organising, decision-making (executive functions), are unable to actually apply their explanations of appropriate responses into everyday life. In other words, that can ‘talk the talk’, but are unable to ‘walk the walk.’ This simply means that we need to take a more curious approach to the MCA when working with people affected by brain injury. This is especially important to recognise when considering longitudinal decisions.

We need to look at the person’s ability to make the decisions in the moment, which often means reviewing observational evidence to look at functional capacity over a period of time.

As a case manager, you’re not just thinking about capacity in the context of health and social care needs. You’re also looking at financial management: whether someone’s able to manage their property and assets. Often the two are interlinked.

Eleanor refers to a recent case of hers, B, a young man with brain injury. An assessment was required of his capacity to make overall decisions about his care arrangements. To evaluate his ability to make those decisions, B was spoken with, but views were also included from his family and members of his clinical team, to build up a full picture by triangulation. 

Within the assessment report reference was made to a judgement by Cobb, J, A Local Authority v AW [2020], where it was noted that executive dysfunction affects ‘the ability to think, act, and solve problems, including the functions of the brain which help us learn new information, remember and retrieve the information we’ve learned in the past, and use this information to solve problems of everyday life’.

This was also discussed in the judgement of TB v KB and LH [2019] where McDonald, J considered evidence around capacity to conduct legal proceedings, and remarked that there were ‘glaringly obvious occasions when P has not been able to bring to mind information that it is important to know in the moment to make the relevant decision’.

For B, it was concluded that with increased support he could be enabled to make the decisions, but there was clear evidence that this wasn’t the case in real life situations where that scaffolding was lacking. Therefore, on balance, B lacked capacity to decide on his support arrangements.

Overall, the concept of longitudinal decisions within mental capacity assessment, is less well understood. There’s a bit of a myth that MCAs must be decision and time specific, but that’s not strictly true. A more correct way of looking at it, is whether the person has capacity to make a specific decision throughout the material time when it needs to be made. 

So, when looking at fluctuations in capacity and the ability to make longitudinal decisions, we have to consider whether the person has capacity or not most of the time and when they don’t, what are the levels of risk associated with the person not having support to make the decision? 

• Complexities in presentation – do you know enough about fluctuating capacities?

A case from February this year, A Local Authority and H [2023] which was judged by Hayden, J. really portrays the challenges around fluctuating capacity.

The individual, H, was biologically male, but referred to themselves as female. She didn’t have a brain injury but presented with executive dysfunction, which was related to a developmental disorder and trauma from past childhood abuse.

H presented a with a sexual interest in young children and concerns were raised around her capacity to make various decisions on residence, support, and her use of social media. It was observed that when H was calm and engaged, she had capacity to make the relevant decisions, but she became functionally incapable at times of heightened distress and emotional dysregulation. 

Hayden, J concluded on the evidence, that H lacked the capacity to make decisions in question. This again emphasises the need to look at certain decisions in the round rather than as a one-off event.

• Suspending your own beliefs and values, and the power of supervision

Both Shabnam and Eleanor were keen to emphasise another significant challenge to address in professional values. You have to leave these at the door. Things that you might think are important or relevant to a decision, the person might not. You need to understand who they are as a person, what motivates them and what their history is.

We all have different thresholds of what’s important, risky or acceptable. When assessing mental capacity, it’s a fine art trying to balance the person’s perspective with views of the professionals who are interested in their welfare. But as assessors, we have to focus away from a paternalistic mentality to deliver a person centred and fair assessment.

That said, you can’t go into an assessment completely impartial as some kind of empty, spiritless robot. We’re all human and we all have our own underlying values. You have to identify where those might crop up and influence your judgement, and then try to fix that. 

That’s where it’s great to have peer discussion, supervision or reflection. Two minds can always unpick something better than one. 

When Eleanor assessed K, who had profound autism, learning disability and sensory processing needs, she was faced with a dilemma. He preferred not to wear clothes when he was at home, because he needed to feel pressure against his skin to self-regulate. The carers around K were concerned about protecting his dignity due to him being naked, and he was encouraged to wear clothes. 

While dignity is important, we have to remember it is also a socially constructed concept, which may not have been subjectively relevant to this person. It seemed that having sensory relief was more important to his wellbeing, which was something that the professionals around him couldn’t relate to. K’s choice to to be naked wasn’t the decision being explored as part of the assessment. However, the issue did stand out as part of his wider care arrangements and seemed to pose an ethical dilemma for the staff. 

But it’s important to remember that sometimes people may wish to behave in ways which go against the social consensus, and they may have valid reasons for this. 

For instance, some people who have no mental impairment or sensory conditions, choose to be naked. Would the behaviour of naturists be classed as risky? Would people from certain tribal communities be classed as undignified? Or is that relative to the sociocultural context? 

Each decision must be approached holistically and from a framework that is relevant to the client being assessed. 

Overall, the MCA tells us that the relevant information must include reasonably foreseeable consequences of deciding one way or another. We need to establish whether the person can appreciate the objective level of risk, but we also have to think more deeply about whether the consequences that we see, are on the same gradient from the person’s vantage point. 

• Holding in mind how a good assessment lays the foundation for a positive “Best Interest” experience 

A good assessment should also provide the foundations for a person centred best interest decision, should that be required. If a best interest decision is needed, being able to determine what the person would want for themselves (had they had capacity) is a huge undertaking, not least because our case management practice is built on client consent to implement care plans and interventions to better lives and improve wellbeing. 

Being able to make a best-guess decision on the basis of understanding a client’s life, their socio-cultural context, their values, their right to change their mind, with the skills and abilities that they possess at the time and with the feedback from those who know them well is clearly a challenging process. We need to get it right to make decisions based on the client’s own values, and that they are comfortable with. We need to see from the eyes of the client and ask what would they do, had they got the capacity to make the decision themselves. If a report contains this insightful content and the decision is capacity is lacking, then this data will make the next steps much smoother. 

In conclusion, capacity assessments are not uncomplicated, and they can certainly test any assessor. Setting up the process in a client-centred way, knowing some of the complexities that might present and using the resources available to you (whether reports or people), are all important parts of the process. But untangling and interpreting the importance of values can be the hardest part, yet this is paramount to ensuring empathy and respect for the person being assessed. And the best bit is that no input is wasted, whether it helps a client feel more comfortable the next time they undertake a capacity assessment or if a best interest meeting is required.

For capacity assessments, case management and treating psychology support for seriously and catastrophically injured clients and families with a focus on trauma-informed approaches and EDI values, please contact Dr Shabnam Berry-Khan on www.psychworks.org.uk or admin@psychworks.org.uk – we would be happy to support you and your clients!

Eleanor Tallon is contactable on eleanor@mcaprofessional.co.uk. 

Between our two services, we cover the whole of England!