What are advance decisions and advance statements under the Mental Capacity Act?

Advance statements and advance decisions are ways in which people can ensure that their wishes and preferences are followed or taken into account if a time comes when they cannot make a decision for themselves because they lack the capacity to do so.

Advance statements allow individuals to express their wishes and feelings about any decision that may need to be made, for example, about their future care, support and treatment. They are not legally binding.

Advance decisions – also known as advance decisions to refuse treatment – allow individuals to set out the medical treatments they wish to refuse in the future should they lose capacity to make the decision. They are legally binding as long as they meet certain criteria.

Sometimes other terms, such as ‘living will’ and ‘advance directive’, are used, but these are not used in the Mental Capacity Act 2005 (MCA) or its code of practice, unlike ‘advance decisions’ and ‘advance statements’.

Advance decisions and advance statements can be really important for people with mental health problems, where they may be more likely to have mental capacity issues in the future that mean they are unable to make specific decisions for themselves.

These include people with dementia who may eventually lose the capacity to make certain decisions or may experience fluctuating capacity, and those with bipolar disorder who may also experience times when they are unable to make decisions for themselves.

Benefits of advance decisions and advance statements

Why should individuals take the time to make an advance statement or advance decision?

• It may provide reassurance, knowing that their decisions must legally be carried out or their wishes and feelings considered in the future.
• They may feel they have removed the burden of making a decision from family or friends.
• It may help them feel they have taken back control of their lives after receiving a worrying diagnosis.
• They may feel a degree of dignity by being able to plan ahead.

Points for practice

• Don’t be scared to have the conversation. Many professionals worry about talking about advance decisions and statements and fear that it will upset people. Instead, people tend to want to know their options and find planning ahead a positive thing to do. If someone does not want to talk about it, just apologise and change the conversation.
• Look out for cues that can lead to a conversation about planning ahead, for example, someone telling you about their fears for their future care or saying something like, “I never want that to happen to me”.
• When undertaking a needs assessment or care and support planning, have a conversation with the individual about their future wishes and preferences. If appropriate, use this as an opportunity to tell them about advance decisions and statements.
• Be prepared to receive an advance decision or statement from someone who has completed one. Find out if you have a local policy on what to do with them and/or ensure that any copies given to you are kept on the person’s record, shared with other professionals where appropriate, and available if needed in the future.
• Health and social care organisations often have information leaflets on advance decisions or advance statements that you can share with people. Failing that, charities like Alzheimer’s Society, Compassion in Dying and Macmillan Cancer Support can provide information and template forms.

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