What Does Lack of Capacity Really Mean?

February 7, 2023
Female student in a wheelchair

The CPI Clinical Holding (formerly CH-3) programme has given staff excellent tools and problem-solving capability to support individuals to receive essential care and treatment.

The course has also been found to improve the quality of life of individuals who require interventions and their health outcomes1 . Without such interventions, delivered by skilled staff, these individuals would not be able to access the treatment needed. What's more, it received a High Commendation at the HSJ Partnership Awards in 2023.

Clinical Holding involves the restriction of movement to deliver essential care and treatment.

There are two scenarios where Clinical Holding might happen. The first is where someone is in full agreement with the proposed treatment, but in the moment their movement might make the procedure unsafe, this could be because of a needle phobia or involuntary movements.

Lack of capacity

The second situation in which Clinical Holding might be used, is when an individual cannot consent due to lack of capacity. This would only happen as part of a much larger, and it could be argued more significant, piece of work.

The decision whether to attempt treatment involving Clinical Holding (or not) would be made before the proposed intervention.

Typically, this would involve multi agency teams, including family members, to ensure the decision and action are in accordance with current legislation, national guidance and that the intervention is in the person’s best interests.

National guidance

Across the UK and Ireland, the national guidance differs in relation to mental capacity.

  • The Mental Capacity Act (2005) applies in England and Wales.

  • The Mental Capacity Act (2016) covers Northern Ireland.

  • In Scotland, The Adults with Incapacity (Scotland) Act (2000) is used.

  • In the Republic of Ireland there is The Assisted Decision-Making (Capacity) Act (2015).

While some of the terminology and processes differ across the regions, there are many common themes. The national guidance across UK and Ireland advocates a human-rights based, person-centred approach that empowers the individual to ensure that vulnerable adults needs are not overlooked. Having an awareness of the general principles from the guidance, should cause us to make sound professional decisions, which would stand up to scrutiny, if required.
Some of the general principles are summarised below.

The assumption of autonomy and capacity should be the starting point

It should be assumed that every adult is competent and has the right to make decisions autonomously.

Someone should not be labelled as ‘lacking capacity’, simply because they have a mental health diagnosis, learning disability, dementia, other neurological condition or communication difficulty.

Adults have the right to make health decisions which others perceive to be unwise (such as refuse treatment) even if the decision has a detrimental effect on their own health.

For a person to be deemed as lacking capacity they would have to demonstrate this, in relation to their competence, such as an inability to retain and weigh up the information available, to make a decision. 

Capacity is transient

Someone’s capacity can deteriorate or improve over time. With a degenerative condition, such as dementia, someone’s ability to make complex decisions might diminish. Conversely, someone may lack capacity temporarily, for example if they are intoxicated, but their capacity is likely to improve.

Therefore (unless an intervention is urgent and becomes an act of necessity) consideration should be given to whether an individual could develop capacity over time and be supported to be involved in the decision, maintaining their autonomy.

This might happen by simply allowing processing time, providing information in an accessible format, and involving advocacy and speech and language therapy where necessary.

Until we have good information available to us, each of us might be considered to “lack capacity” in a highly complex health decision, for instance which type of cancer treatment to elect for.

We would require information in a format we can understand and at that point we may still rely upon the advice and guidance of an experienced oncologist to support us to give ‘informed consent’.

Keeping the person at the centre of the decision

Even in circumstances where it is felt that the individual is lacking capacity, the best practice guidance stresses the importance of empowering people, maintaining a person-centred approach, and including them in the decision making, as far as they are able.

This could be by involving family members, using professional advocacy services, or adopting a watching brief2 (non-instructed advocacy) so that we consider how we can best empower a person who is not able to represent themselves.

All less restrictive options are exhausted

To arrive at a decision to use a clinical hold, less restrictive ways of treating the person must have been considered. These would include alternative treatments, desensitisation, distraction, social stories, and anxiolytic medication.

Organisations must also make reasonable adjustments, adopting person-centred approaches to avoid the use of a restrictive intervention.

A reasonable adjustment might be, attempting the intervention during a home visit where they feel more comfortable to have the procedure or giving the individual the first appointment to avoid them having to wait.

Generally, a clinical hold might be less risky than a general anaesthetic3, however in the moment those involved must consider whether it is safe to proceed and be aware that the physical and psychological risks may outweigh the benefits. In which case staff would need to rethink their strategy.
Professionals often face complex duty of care decisions, where their actions or omission to act might be called into question. It is essential that staff understand their legal and professional responsibilities and follow local policies and procedures to promote best practice.

 If you'd like to know more about our Clinical Holding training or schedule a consultation, visit our page.

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1. Public Health England, ‘Blood tests for people with learning disabilities: making reasonable adjustments’, 2017 https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/646489/Blood_tests_for_people_with_learning_disabilities.pdf
2. https://www.asist.co.uk/watching-brief
3. https://rcoa.ac.uk/documents/consent-ethics-children-young-people/reluctant-child