Due to the nature of hidden impairments in brain injured individuals, they may be assessed as having capacity to make their own decisions when they cannot. As a result, they can be vulnerable and find themselves in dangerous situations.

People working with brain injured service users must be aware of how this injury impacts decision making and be prepared to share and explain this to other professionals.

The Mental Capacity Act (2005) is presumably familiar to most people working with individuals with a brain injury or mental impairment.

It refers to how we should assess the ability of people with mental impairment to make a specific decision, based on whether they can understand the information, retain it (for long enough to decide), use and weigh that information when deciding, and communicate their choice.

The quality of said decision is not a criteria – someone with capacity has the same rights as everyone else to make unwise decisions (and suffer the consequences).

The implications of these decisions can be significant. Some examples of capacity assessments faced by our service userscan include their capacity to manage their own money, decide where to live, to decide whether they will access intervention or support, either formally or in their day-to-day life.

Other decisions may cover lifestyle choices, such as whether to eat junk food, smoke or drink.

The person making the decision about capacity should be the professional who is responsible for the final decision or action.

This can be a diverse range of professionals including social workers or care coordinators, care managers, GPs, surgeons, dentists, support workers, clinicians and nurses, to name a few.

Although the assessor is likely to have expertise in their own particular area, and therefore understand the decision best, they may not always be the person best placed to understand the client.

Gilbert and George (2018) point out that for people with brain injury, assessment of their ability to make decisions often requires both expertise and experience in brain injury and how it can present.

They refer to the “frontal lobe paradox”, which is the ability of individuals with damage to executive functions but often intact speech and social skills to do very well in formal office-based assessment tasks, and yet struggle significantly in their day-to-day life.

Someone unaware of this possibility may unwittingly take a service user at face value.

They may not realise the information they are missing, or may find it hard to understand how someone self-evidently capable of talking and reasoning can at the same time be oblivious to their own difficulties or incapable of putting their plans into action.

One difficulty is that at the surface level, these difficulties may not appear to be related to cognitive impairments.

Just as difficulties with motivation and planning can be misinterpreted as laziness or depression, and impulsivity may be seen as being rude or “not listening”, service users with executive functioning problems can be mislabelled as an individual with capacity who happens to make unwise decisions – often repeatedly.

Just as with the earlier examples, this mislabelling can mean they are unable to receive the support, treatment and assistance that they need. In worst case scenarios, this can lead to being put in vulnerable situations, to increasingly risky and criminal behaviour, to failed discharges.

So what are the issues that may come under the “frontal lobe paradox”?

The paradoxical ability of the individual to perform very well in a one-to-one setting, but to struggle in the “real world”, makes more sense when we remember that assessments are not really very similar to the real world.

In most assessments, we make the effort to control the environment and the situation as much as possible. We reduce distractions, and clearly describe the task, and make sure all the information they need is clearly laid out. The task – almost always just one single task – is clearly explained.

Compare this to the real world. In most everyday situations there are distractions and competing pieces of information we need to pay attention to.

We’re frequently performing more than one executive functioning task at a time – someone shopping is both using working memory and planning skills to think about their meal and what is required, and also using visual scanning and attentional skills to find the items they need, whilst also paying attention to their surroundings, trying not to walk into people, coping with stimulating environments and possibly keeping one eye on the time.

Performance in the former situation is not likely to be an accurate reflection of performance in the latter.

Consider also the role of impulsivity, which may not be apparent in an office setting where someone is focused on how they are performing in an assessment, but is likely to be a difficulty in an environment where there are many distractions and the person is potentially paying less attention to their own behaviour.

Many of the problems described above could be overcome or compensated for, were it not for the role of insight. Insight in this context is associated with the ability of an individual to self-monitor and evaluate their actions and connect these to the consequences or outcomes.

Someone with a lack of insight will be genuinely unaware of their own difficulties or limitations, no matter how obvious they may seem to other people.

These service users may tell you that their memory is fine, even though they don’t remember having this conversation with you many times before. They may see no problem with staying within a budget, even though they have failed in every previous attempt.

Sometimes it may be that they do not recall their previous difficulties and cannot learn from the experience, but often when reminded of their previous attempt they still cannot accept their difficulties.

A service user with insight difficulties is unlikely to be able to use and weigh information about how their impairments impact on the decision to be made, or make accurate predictions of the outcome of any choice.

They’re also unlikely to be able to identify what kind of support they need. They’re extremely unlikely to be able to bring their difficulties to their examiner’s attention.

Additionally, as service users without insight may not see the need for support or the consequences of actions, even if they have access to support or strategies, they may not realise when they need to use them.

Overall, these difficulties are unlikely to be immediately apparent to an external professional. To someone who works closely with the service user, who has seen them in a variety of settings and knows their pattern of behaviours, they may be hard to miss.

The 2018 National Institute of Clinical Excellence (NICE) guidelines on assessing capacity make specific reference to executive difficulties, and recommend both real life observations and consulting other professionals involved in the individual’s care.

Caution should be taken about the information requested from professionals – for example, some professionals may only see service users in controlled, individual sessions and be equally vulnerable to these errors.

Even cognitive assessments attempting to measure executive functioning are affected by the frontal lobe paradox, although some cognitive assessments have deliberately attempted to overcome this difficulty by mimicking a real-world situation.

For example, the Multiple Errands Test, which is performed in a shopping centre, is known to identify difficulties in clients who have otherwise performed well in more controlled assessments.

It may be essential to seek information from people who see the service user regularly, day-to-day, in a variety of situations – including nurses, therapy or activity coordinators, support workers or family members.

These people may be uncertain about questioning a perceived expert opinion, but can report feeling surprised by the outcome of professional assessments, given their own observations.

This may include observations of an individual who can sit down and add up the cost of items in a session and recall their budget, but in each shopping trip they regularly bring more items to the tills than they can afford, or a person who uses strategies such as Google Maps to plan their route, and is in constant imminent danger of walking into traffic because they are looking at their phone rather than the road.

This would be best practice; however it competes with pressures on time and resources in many services. Also, most services are dedicated to empowering service users, and are all too familiar with the need to advocate on their behalf against risk adverse professionals.

In these circumstances, faced with an individual who is articulate and knowledgeable and by every usual standard performs well, it is easy to see how the assessor may want to believe they are capable and autonomous.

It is our role to do our own advocating for our clients, and not only explain what difficulties we see, but the subtle underlying impairments that they represent, so that the assessor has all the information they need to make a good quality capacity decision.

Dr Jennifer Tibbles is a clinical psychologist and Warren Bridges is a nurse associate at Cygnet Heathers, a neuropsychiatric rehabilitation facility in West Bromwich. For more information please call 0121 796 2731 or visit www.cygnethealth.co.uk

References

George, M. S., & Gilbert, S. (2018). Mental Capacity Act (2005) assessments: why everyone needs to know about the frontal lobe paradox. The Neuropsychologist5(1), 59-66.

National Institute of Clinical Excellence (NICE)(2018) Decision-making and mental capacity (NICE guideline NG108). Retrieved from https://www.nice.org.uk/guidance/ng108