Involving the Adult in Best Interests Decisions

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 have views on matters affecting the decision, and on what outcome would be preferred. Their involvement can help work out what would be in their best interests.

The decision maker should make sure that all practical means are used to enable and encourage the person to participate as fully as possible in the decision making process and any action taken as a result, or to help the person improve their ability to participate.

Consulting the person who lacks capacity will involve taking time to explain what is happening and why a decision needs to be made. The MCA Code of Practice includes a number of practical steps to assist and enable decision making which may be also be helpful in encouraging greater participation. These include:

• using simple language and / or illustrations or photographs to help the person understand the options;
• asking them about the decision at a time and location where the person feels most relaxed and at ease;
• breaking the information down into easy to understand points;
• using specialist interpreters or signers to communicate with the person.

This may mean that other people are required to communicate with the person to establish their views. For example, a trusted relative or friend, a full time carer or an advocate may be able to help the person to express wishes or aspirations or to indicate a preference between different options.

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

There are some situations where decisions may be deferred, if someone who currently lacks capacity may regain the capacity to make the decision for themselves. The MCA requires the decision maker to consider:

• whether the individual concerned is likely to regain the capacity to make that particular decision in the future; and
• if so, when that is likely to be.

It may then be possible to put off the decision until the person can make it for themselves.

In emergency situations – such as when urgent medical treatment is needed – it may not be possible to wait to see if the person may regain capacity so they can decide for themselves whether or not to have the urgent treatment.

Where a person currently lacks capacity to make a decision relating to their day to day care, the person may – over time and with the right support – be able to develop the skills to do so. Though others may need to make the decision on the person’s behalf at the moment, all possible support should be given to that person to enable 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 factors which may indicate that a person may regain or develop capacity in the future are:

• the cause of the lack of capacity can be treated, either by medication or some other form of treatment or therapy;
• the lack of capacity is likely to decrease in 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 increase their understanding and ability to make certain decisions;
• the person may have a condition which causes capacity to come and go at various times (such as some forms 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 previously unable to communicate may learn a new form of communication.

How much someone can learn about a person’s past and present views will depend on circumstances and the time available. ‘Reasonably ascertainable’ means considering all possible information in the time available. What is available in an emergency will be different to what is available in a non-emergency. But even in an emergency, there may still be an opportunity to try to communicate with the person or his friends, family or carers.

People who cannot express their current wishes and feelings in words may express themselves through their behaviour. Expressions of pleasure or distress and 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.

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 shape the decision to be made. This could have been through verbal communication, writing, behaviour or habits, or recorded in any other way (for example, home videos or audiotapes).

It places special emphasis on written statements the person might have made before losing capacity. These could provide a lot of information about a person’s wishes. For example, these statements 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 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 written statements made by a person before losing capacity which request specific treatments as seriously as those made by people who currently have capacity to make treatment decisions. But they would not have to follow a written request if they think the specific treatment would be clinically unnecessary or not appropriate for the person’s condition, so not in the person’s best interests.

It is important to note the distinction between a written statement expressing treatment preferences and a statement which constitutes an advance decision to refuse treatment. This has a different status in law. Doctors cannot ignore a written statement that is a valid advance decision to refuse treatment. An advance decision to refuse treatment must be followed if it meets the MCA requirements and applies to the person’s circumstances. In these cases, the treatment must not be given. If there is not a valid and applicable advance decision, treatment should be provided based on the person’s best interests.

Everybody’s values and beliefs influence the decisions they make. They may become especially important for someone who lacks capacity to make a decision because of a progressive illness such as dementia, for example. Evidence of a person’s beliefs and values can be found in things like their:

• 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 capacity.

Click here to view Scenario: Considering beliefs and values.

The MCA allows actions that benefit other people, as long as they are in the best interests of the person who lacks capacity to make the decision. For example, having considered all the circumstances of the particular case, a decision might be made to take a blood sample from a person who lacks capacity to consent, to check for a genetic link to cancer within the family, because this might benefit someone else in the family. But it might still be in the best interests of the person who lacks capacity.

‘Best interests’ goes beyond the person’s medical interests. For example, courts have previously ruled that possible wider benefits to a person who lacks capacity to consent, such as providing or gaining emotional support from close relationships, are important factors in working out the person’s own best interests. If it is likely that the person who lacks capacity would have considered these factors themselves, they can be seen as part of the person’s best interests.