The Mental Capacity Act 2005 provides a framework for decision making on behalf of those over the age of 16 who lack capacity to decide about a health or social care issue.
What is capacity?
Broadly speaking, capacity is the ability to understand the issue, retain and process the information about it so as to come to a choice, and communicate the decision about the issue in any way.
Preparing for an assessment
Before completing an assessment under the MCA, the following 4 points should be completed
1. Decide and be clear about what the decision is. Remember, the assessment should only cover one decision per assessment to ensure the person is not confused about what is being asked
2. Remember to ask the person the question (in whatever manner is appropriate) and record their answer.
3. Identify the information relevant to the particular decision.
- What is the Concept? (What is money/care/support/health condition)
- What are the Mechanics of the decision – how does it come about?
- What are the Short-Term Risks and Benefits on both doing it and not doing it?
- What are the Long-Term Risks and Benefits on both doing it and not doing it?
4. Take all practicable steps to support the person to make the decision
- What method of communication is needed to support the person?
- What is the best time of day for the assessment?
- What is the best location for the assessment?
- Would someone else be helpful to assist if you do not know the person well? Is there someone the person would like to have there to support them?
- Does the assessment need to be over more than one visit?
- Is there some work which can be done before the assessment to help the person make the decision?
Assessment of Capacity
Once the above preparation has been completed, the functional assessment can take place. Remember this is not a ‘test’ where the person must prove they have capacity.
1. Is the person able to understand the relevant information related to the decision?
- Be cautious of setting the questions too high. Consider what the ‘average person on the street’ would need to understand to make the decision.
2. Is the person able to retain the relevant information, long enough to come to a decision?
- This is not a memory test. The person only needs to retain the information related to the decision during this conversation.
3. Is the person able to use or weigh up the relevant information?
- Does the person have the capacity to take part in the decision-making process and be able to see the various parts of the argument and relate them to one another?
4.Is the person able to communicate their decision, by any means?
- This element of the test is only relevant where it is impossible, despite all practicable steps, to tell whether the person can decide, for example, someone with no ability to communicate their answers.
If a person is unable to complete one of the four elements of the functional assessment, they are considered to not be able to make the decision at hand. It is vital to record your questions and the responses of the person.
Planning for future incapacity?
An individual can make decisions now, while they have capacity, for a time when they may lack capacity in the future. This ability to plan for future incapacity is a right for all people including those who have a learning disability. The Mental Capacity Act clarifies the rules relating to planning for future incapacity.
What’s in a name?
There may be some confusion about terminology. Can someone set up an ‘Advance Directive’, a ‘living will’ or an ‘advance statement’? An advance statement in Scotland has a different meaning and legal status to an advance statement made in England.
‘Advance Directive’ is old legal terminology which has fallen out of use – except perhaps (as with the term ‘living will’) – with the public.
What is an advance statement?
If a person is over 16, he/she can express their wishes relating to future care, and relating to treatment that they would prefer (such as what medication or care works well for them in a crisis), who they would want (or not want) to be contacted in the event of admission to hospital
– in fact, anything that is important to them that they would want carers to consider if they were unable to tell them. The list could be very short or very comprehensive and will, of course, differ from person to person. This is an advance statement. This information is not legally binding on doctors or other professionals, but the law requires the bits of it that are relevant to a decision about the person who lacks capacity to be considered. This must be evidenced in the decision maker’s notes. It is worth noting that a person doesn’t need to have capacity to fully understand the decision to be able to share their wishes and feelings, which should be represented in in any Best Interest decision.
What is an advance decision to refuse treatment?
In amongst their expression of wishes there may be a desire not to have a particular medical treatment in the future. Because this is a desire not to have a medical treatment, it is an advance decision to refuse treatment. The person must be over 18 to do this. ‘Refuse’ is a keyword – a person cannot demand treatment in an advance decision (in fact they cannot demand treatment at all). ‘Treatment’ is also a key word. It is about medical treatment – not any other aspect of care.
An advance decision could be made either verbally or in writing in most circumstances. So, the person could express their wishes about treatment refusal verbally, but there are disadvantages to that as it may be difficult to prove who said what and when. It is advisable to write the requirements down and be very clear about exactly what treatment is being refused and the circumstances in which it would be refused. The person should discuss their requirements with the doctor responsible for their treatment, although they do not have to get their agreement or permission. An advance decision to refuse treatment that is clearly expressed and is applicable to the treatment in question is likely to be legally binding on doctors.
It is important to recognise that if the person wishes to make an advance decision to refuse life sustaining treatment – for example terminal cancer treatment – the law requires specific formalities to be undertaken. The advance decision must be in writing, signed, witnessed and signed by the witness, and contain wording to say that the refusal is to apply ‘even if life is at risk’. Note that the requirements are for the advance decision to be signed – not necessarily by the person. If the person with a learning disability is unable to write but is able to make their requirements known, he/she can get someone to sign on their behalf. It must be clear that the person is signing on the other person’s behalf – and under their instruction – and this must be witnessed.
What is Lasting Power of Attorney?
If a person has capacity but they may be unable to make decisions for themselves in the future because of a diagnosis of dementia, someone will need to make decisions for them. Who does this will depend on the situation. Generally, professionals will make decisions about a person’s health and social care, and their family or carers will decide on day-to-day matters. If the person wishes, they can officially appoint someone they trust to make decisions for them. This is called making a lasting power of attorney (LPA). This enables them to give another person the right to make decisions about their care and welfare. They can also appoint an attorney to decide on financial and property matters. There are special rules about appointing an LPA. To find out more, read GOV.UK’s advice on making a lasting power of attorney: https://www.gov.uk/power-of-attorney. It is important to remember that the person or their appointee cannot demand treatment, and the appointee should be representing the views of the individual, could they tell us.
Advance Care Plan (Easier read)
This is a form of advance care planning that can give the individual the opportunity to think about, discuss and document their wishes, and lets people supporting them know about what they want. This document is used by end-of-life care services and an easier read version has been developed for people with learning disabilities. Additional information can be seen in Appendix 6.
End of Life Care Planning | The Victoria & Stuart Project
Easy read booklet for advanced care planning
My Advanced Care Plan | Easy Read
What about patients detained under the Mental Health Act?
If the person is a detained (sectioned) patient, it is important to know that the law currently allows refusal of treatment for a mental health condition to be overridden if doctors consider that the treatment that the person is refusing is the only treatment that will work in their case. It does not mean that their refusal will automatically be overridden, and doctors must clearly demonstrate that it is medically necessary to override their wishes to refuse the treatment. A person can still refuse treatment for a physical condition that is unrelated to their mental health condition – such as cancer. Any decisions relating to someone’s physical health, even if they are held under the Mental Health Act, should be carried out under the principles of a capacity assessment.
How can someone get help to set out their wishes and requirements?
Nationally areas have produced easier read booklets in different styles, and they are available for anyone with a learning disability if they wish to use them, although they are under no obligation to do so. The person may want to ask their clinical team about the availability of these booklets. In addition, an advocacy service may be able to help.