An adult’s (in this case, an adult is a person over 16 years) ‘capacity’ is his or her ability to understand, retain, weigh-up and use information for decision-making, then to communicate their decision in an understandable way. If they are unable to do this due to physical illness or psychological disturbance, they are considered to ‘lack capacity’.
This is a very significant situation, as lacking capacity means that the important decisions a person would usually make for him or herself will be taken by someone else. We therefore consider all people to have capacity until proven otherwise.
Capacity isn’t just important for a patient/client deciding to undergo a particular treatment or health procedure in a hospital, like an operation. It’s actually a vital issue in all the activities we ask patient/clients to take part in – things like washing and deciding what clothes to wear, what food and drink to take, whether they are comfortable and content or unhappy and in pain – no matter where the activity takes place, whether it be in a hospital, clinic, care home, day care setting, the person’s own home or out in the community.
As a health care assistant, you may find that you are part of a team assessing someone’s capacity to make a decision. To carry out this assessment, we must answer two questions:
Stage 1. Does the person have an impairment or disturbed functioning of his or her mind or brain?
Stage 2. Does this impairment or disturbance mean the person is unable to make a particular decision when he or she needs to?
It’s important to recognise that a decision that someone lacks capacity – that is, he or she cannot understand, retain, weigh-up and use information for decision-making before communicating their decision in an understandable way – is not a once-and-for-all judgement. People’s capacity can change over time as their illness or impairment improves, so regular assessments of the person’s capacity need to be made.
A range of conditions can lead to people’s ability to make decisions for themselves to be impaired and for them consequently to lack capacity. These include:
- advanced dementia
- profound learning disabilities
- severe mental health problems, such as schizophrenia or extreme depression
- the effects of severe drug or alcohol abuse
- mental and physical conditions that cause confusion, drowsiness or loss of consciousness.
We can see, then, how someone’s capacity can change over time. A person with dementia, for instance, will be perfectly capable of making decisions in the early stages of the condition, but his or her capacity may reduce and eventually be lost as the dementia progresses. Someone who has been involved in a road accident and is admitted to hospital unconscious will lack capacity at that specific time, but will regain it as his or her condition improves and consciousness returns. A person with schizophrenia might have periods when he or she is considered to have capacity, but also psychotic episodes in which he or she cannot distinguish between reality and fantasy and lacks capacity to make some decisions.
The principles underpinning assessment of capacity for people with learning disabilities are just the same as they are for everyone else. We must never assume that because someone has a learning disability, he or she lacks capacity. As long as they have the capacity to do so, an adult with a learning disability has every right to refuse an offered treatment (even if doing so would be detrimental to their health) or decide not to take part in whatever activity we propose to them.
People with learning disabilities might have difficulty understanding information, so we need to make sure we support them in every way we can to make decisions that are right for them. Specialist help may be required to ensure the information is communicated in a way the person can understand, and that his or her responses are understood and respected. You’ll find very useful advice on issues of consent and capacity for people with learning disabilities in the RCN’s guidance Meeting the health needs of people with learning disabilities.
People sometimes get confused between capacity – the ability to make decisions and communicate them – and making decisions that we may consider to be ‘bad’. The latter – making decisions that we may consider to be ‘bad’ – does not necessarily mean the person lacks capacity. Someone may, for example, refuse to accept a particular medicine or a blood transfusion even though we know they are necessary parts of their treatment. We might feel the person has made a ‘bad’ decision, but the decision may be based on previous unpleasant experience with the same medicine, or deeply-held religious beliefs about the use of blood transfusions. This person has capacity – he has understood and retained the information given to him, has weighed it up and used it to inform his decision, and has communicated his decision in a clearly understandable way. Only if it could be shown that the person had, for example, a mental illness that was impairing his capacity to make decisions could steps be taken to override his stated wishes.