Involving the Adult

Wherever possible, the person who lacks capacity to make a decision should still be involved in the decision making process.

Even if the person lacks capacity to make the decision, they may still have an opinion on issues that affect the decision, and on what they would want to happen. Their involvement can help work out what would be in their best interests.

Time needs to be taken to explain what is happening and why a decision needs to be made. There are a number of practical steps to help. These include:

• using simple language and / or pictures or photographs to help the person understand what the options are;
• asking them about the decision at a time and place where they are likely to feel most relaxed and comfortable;
• breaking the information down into a number of points that may be more easy to understand;
• using interpreters or people who can use sign language to communicate with the person.

Click here to view Scenario: Involving someone in working out their best interests.

Some decisions can be delayed if the person who currently lacks mental capacity may later become able to make the decision for themselves.

The person may – over time and with the right support – be able to develop the skills to make decisions about what they want for their day to day care, for example. Although others may need to make the decision on the person’s behalf to start with, all possible support should be given to them to help them to develop the skills so that they can make the decision for themselves in the future.

Click here to view Scenario: Taking a short-term decision for someone who may regain capacity.

Some reasons which a person may regain or have capacity in the future include:

• the reason why they lack capacity may respond to treatment, either by medication or some other form of treatment or therapy;
• their ability to make decisions may increase over time (for example, where it is caused by the effects of medication or alcohol, or following a sudden shock);
• a person with learning disabilities may learn new skills or be subject to new experiences which helps their understanding and ability to make certain decisions;
• the person may have a condition which means their capacity may come and go from time to time (such as some types of mental illness). So it may be possible to arrange for the decision to be made during a time when they do have capacity;
• a person who was previously unable to communicate may learn a new form of communication and so can let people know their views.

People who cannot express their current wishes and feelings in words may express themselves through their behaviour. Expressions of pleasure or distress and other emotional responses will also be relevant in working out what is in their best interests. It is also important to be sure that other people have not influenced a person’s views.

An advocate could help the person make choices and express their views (see Advocacy).

The person may have held strong views in the past which could have a bearing on the decision now to be made. All reasonable efforts must be made to find out whether the person has expressed views in the past that will affect the decision that needs to be made. This could have been through verbal communication, writing, behaviour or their habits, or recorded in any other way for example, home videos or audiotapes.

Any written statements the person might have made before losing mental capacity could provide a lot of information about their wishes. For example, they could include information about the type of medical treatment they would want in the case of future illness, where they would prefer to live or how they wish to be cared for.

The decision maker should consider any written statements carefully. If their decision does not follow something a person has put in writing, they must record the reasons why. They should be able to justify their reasons if someone challenges their decision.

A doctor should take any written statements about specific medical treatment, which are made by a person before losing they lose capacity, as seriously as those made by people who currently have the mental capacity to make treatment decisions. But a doctor would not have to follow such a written request if they think that the treatment would be clinically unnecessary or not appropriate for their condition, and so therefore would not be in their best interests.

It is important to note the distinction between a written statement expressing treatment preferences and an advance decision to refuse treatment.. Doctors cannot ignore a written statement that is a valid advance decision to refuse treatment this  must be followed. If there is no advance decision, treatment should be provided based on the person’s best interests.

Everybody’s values and beliefs influence the decisions they make. This may include:

• cultural background;
• religious beliefs;
• political convictions; or
• past behaviour or habits.

Some people set out their values and beliefs in a written statement while they still have mental capacity.

Where they cannot make the decision, their wishes and feelings, beliefs and values should be taken fully into account – whether expressed in the past or now. But these will not necessarily be the deciding factor in working out their best interests. An assessment must consider past and current wishes and feelings, beliefs and values alongside all other factors, but the final decision must be based entirely on what is in the person’s best interests.

Click here to view Scenario: Considering beliefs and values.