When people with learning disability present with health problems, it is often necessary to assess their capacity to consent to medical intervention. Doctors are often asked to assess capacity in relation to other matters.
In England and Wales, the Mental Capacity Act 2005 and its accompanying Code of Practice has provided helpful structure and guidance.1
Its overarching principle is that people should be presumed to have capacity to make decisions unless it can be shown they lack capacity.
If they have capacity they are, of course, allowed to make any decision they like.
To determine that someone does not have capacity to make a decision, it is first necessary to show that the person has an 'impairment or disturbance in the functioning of mind or brain', such as a learning disability, which interferes with decision making.
Capacity is 'decision specific'; some decisions are easier than others, for example whether to take painkillers for a headache might be easier than whether to start oral hypoglycaemics for diabetes.
The person is considered to lack capacity if he or she is unable to perform at least one of the following processes:
- understand the information relevant to the decision;
- retain the information;
- use the information to weigh up the options; and
- communicate the decision.
The next step is to consider how much information is needed to make the decision. For people with learning disabilities it can be helpful to restrict information to that which is essential.
A range of consultation skills can help to maximise patients' ability to make decisions for themselves. Information should be provided in a form that can be easily understood. Many people with learning disability have limited reading and writing skills; pictorial aids may be helpful.
For those with milder disability, assessing the process of using the information is often necessary. This requires asking people how they have come to the decision and, of course, just because someone uses a different value set does not mean that they cannot make decisions.
There are very few people who will fail the capacity test because of inability to communicate the decision. Some people communicate more effectively using a signing system or pictorial aids, so it is essential to ensure you can understand their communication with the help of support staff or interpreters.
When people lack capacity for medical decisions, the doctor becomes the 'decision maker'. A decision must be made in the person's best interests not, for example, what suits the carers.
In making a best-interests decision the doctor must consider all relevant circumstances.
The patient should be encouraged to participate in the decision, and their wishes, feelings and values should be taken into account.
The views of others with a legitimate interest also need to be taken into account, for example family and paid carers. For people without family, an independent mental capacity advocate should be involved for major decisions.
Patients may make what might be considered unwise decisions when it is not clear whether they lack capacity.
Occasionally there is dispute about what is in someone's best interests. Community learning disability teams can help with independent assessments of capacity.
Sex and relationships for people with learning disability often evoke emotional reactions in those around them, and people with learning disabilities have campaigned for the right to be allowed to have relationships where appropriate.
The law was clarified by the Sexual Offences Act 2003. It is unlawful to have sex with a person with learning disability if the person (male or female) does not have the capacity to consent to it.
It is also unlawful for someone in a caring relationship with a person with learning disability to have sex with them, whether they have capacity or not.
If a GP becomes aware that someone is having unlawful sexual intercourse with a person with learning disabilities, they have a duty to ensure that local vulnerable adult procedures are being followed.
For people with learning disabilities, the Mental Capacity Act is positive because it ensures they can make as many decisions as they can for themselves, and are as involved as possible in those made in their best interests.
For GPs it provides a clear structure for how to support people in decision making, and how and when to make decisions for such people.
- Dr Hall is honorary clinical senior lecturer at Queen Mary, University of London and consultant psychiatrist at Tower Hamlets Community Learning Disability Service and Dr Ali is specialty registrar at Tower Hamlets Community Learning Disability Service
1. Department for Constitutional Affairs (2007). Mental Capacity Act 2005: Code of Practice. The Stationary Office, London.