4. Making decisions
If a capacity assessment has been carried out and it has been decided that the person lacks the capacity to make a certain decision, it must be made for them, if the decision needs to be made at that time. Who makes the decision will depend upon the circumstances, and there are a number of things that any decision maker must consider.
Who makes the decision?
The person who makes the decision will depend upon the type of decision that needs to be made. If it is an everyday decision, it is likely that the person there at the time can make it on behalf of the person with dementia. If it is more complex, particularly decisions about finances, care or treatment, you may have to consult with either the person's attorney or deputy (if they have one) or a professional involved in their care.
- Everyday decisions about washing, dressing, eating or activities - whoever is with the person at the time can make these decisions, eg the carer, family or care worker.
- Decisions about the person's finances or property - their attorney or deputy for property and financial affairs will make these decisions. For more information see 'Lasting power of attorney' and 'When someone hasn't planned ahead: Deputyship', below.
- Decisions about where the person will live and receive care - if they have an attorney or deputy for health and welfare, they can make the decision, if not, a professional such as a social worker or doctor will make the decision.
- Decisions relating to life-sustaining treatment - if the person appointed an attorney for health and welfare and gave them this power then they may be able to make the decision, if not then it will be an appropriate doctor or consultant.
If there isn't someone who knows the person with dementia well, then the local authority (council) may appoint an independent mental capacity advocate (IMCA) to speak on behalf of the person with dementia. This happens when major decisions are being considered, such as moving to a care home or whether to have serious medical treatment. Sometimes, an IMCA may also be asked to be involved if there is conflict between family members.
Making decisions in the person's best interests
When a decision is made on behalf of a person who lacks the ability to make it themselves, it must always be made in the person's best interests. This ensures that:
- their rights are respected, and
- the decision is the best one for them.
It should never be made in the best interests of the person making the decision. For example, it should never be made to make things easier for the carer or professionals involved.
In doing this, there are a number of things that should be considered. The best interests checklist below outlines these.
Consultation rights and best interest decisions
The best interests checklist shows the rights that the person and those close to them have in decision-making:
- When appropriate, the person has a right to be involved in decisions made about them. This is crucial as just because someone cannot make the decision themselves, this does not mean that they don't still have preferences and feelings about what they would like.
- Family, friends, and carers also have a right to be consulted and involved in the decision, where appropriate. This is vital as they often know the person best and can share what they feel is in the person's best interests, as well as what the person's preferences and views are.
Sometimes, especially when making more complex decisions such as where someone will live, there may be a 'best interests meeting'. This isn't always necessary, but when it is it can be a very good way of considering all the different factors involved in the decision, including the views of the person and their family. Sometimes family or representatives of the person will be invited, but at other times they won't. Where they aren't, their views should still be considered in the meeting. How this is done is dependent on the situation - for example, views could be submitted in writing, or via someone else such as an IMCA. Alternatively, the person or their carer could meet with a professional before the meeting is held to share their views.
Best interests checklist
- Decisions cannot simply be based on the person's age, dementia or other condition, or their behaviour.
- All the relevant circumstances should be taken into account when making a decision. For example, looking at what the person would have considered if they were able to make the decision themselves.
- The person with dementia should be encouraged and enabled to take part in the decision and share their views, where possible.
- It should be considered whether the person will regain capacity later, and if the decision can be put off until then. This is crucial as a person with dementia may have good and bad days and they may be able to make the decision on another day.
- The person's past, present and future wishes and feelings should be taken into account.
- The views of other people, such as carers, friends, family and any attorney or deputy, should be taken into account.
- If the decision involves life-sustaining treatment, there are other special considerations to take into account. For example, checking whether there is an advance decision (see 'Advance decisions' below), considering all the treatment options available and not being motivated by a desire to end a person's life. If there is any doubt over the person's best interests, the case should be referred to the Court of Protection for it to decide.