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Supporting People to Make Their Own Decisions

Amendment

In April 2024, Section 3.4, Providing relevant information was updated to include a link to the revised guidance note from 39 Essex Chambers.

April 1, 2024

One of the main functions of the Mental Capacity Act is to protect the autonomy of people who have capacity to make their own decisions.

Put simply this means either:

  1. Allowing people who can make their own decision to do so; or
  2. Providing support to people to enable them to make their own decision.

This guidance should be used when providing support to a person who:

  1. Is assumed to have capacity to make the decision; or
  2. Has been assessed as having capacity to make the decision through a Mental Capacity assessment.

The first 3 statutory principles of the Act set out how you must support people to make their own decision. All of the principles must be applied at all times;

Caption: Principles
  Principle In Practice
1 A person must be assumed to have capacity unless it is established that they lack capacity. Every person from the age of 16 has a right to make their own decisions if they have the capacity to do so. Practitioners and carers must assume that a person has capacity to make a particular decision at a point in time unless it can be established that they do not.
2 A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success. People should be supported to help them make their own decisions. No conclusion should be made that a person lacks capacity to make a decision unless all practicable steps have been taken to try and help them make a decision for themselves.
3 A person is not to be treated as unable to make a decision merely because he makes an unwise decision. People have the right to make a decision that others would see as 'unwise'. This does not automatically mean they lack capacity and they should not be treated as such.

The purpose of principle 1 in practice is to prevent you from jumping to any conclusions about a person's ability to make a decision, or act for them self on the sole basis of:

  1. Their age;
  2. Their appearance;
  3. Their behaviour;
  4. A physical or mental health condition; or
  5. Having been found to lack capacity to make a previous decision.

Under the Mental Capacity Act it is unlawful to make a presumption that a person lacks capacity on the sole basis of any of the above.

Some people may wish to seek the support of others when making a decision, for example they may:

  1. Ask for information about the range of choices that are available;
  2. Ask for help to understand the implications of the different available choices;
  3. Need time to digest information and think things through;
  4. Want advice from professionals; or
  5. Want to seek the views of family and friends.

Other people may need support in relation to their communication, for example:

  1. Information may need to be provided in an accessible format; or
  2. The person may need an interpreter.

Needing support to make a decision is not uncommon and you should never assume that a person lacks capacity to make a decision on the basis that they require support to do so unless:

  1. All practicable steps have been taken to support them to make their own decision (Principle 2); and
  2. A mental capacity assessment has been carried out to confirm their inability to make the decision.

Sometimes there may be indicators that a person may be unable to make their own decision. These include:

  1. Lacking a general understanding of the decision that needs to be made, and why it needs to be made;
  2. Lacking a general understanding of the likely consequences of making, or not making the decision;
  3. Being unable to understand, remember and use the information provided to them when making the decision; and
  4. Being unable to, or unable to consistently communicate the decision.

There may also be cause for concern if someone:

  1. Repeatedly makes an unwise decision that puts them at serious risk of harm, abuse or exploitation; or
  2. Makes a particular unwise decision that is obviously irrational or out of character.

The presence of indicators does not mean that the person lacks capacity. Principle 2 must be applied and, if the person still seems unable to make the decision, a mental capacity assessment should be carried out.

Click here to access a flowchart summarising the circumstances when a mental capacity assessment should be carried out.

Coercion and undue influence

The person may be subject to coercion or undue influence if they find it difficult to make a decision but are not deemed to lack capacity (following a mental capacity assessment).

If this is the case a safeguarding concern may need to be raised in order to protect them from the effects of the coercive or controlling behaviour of others.

The purpose of principle 2 in practice is to ensure that you:

  1. Uphold a person's right to make their own decision;
  2. Do not make assumptions about mental capacity based on a need to be supported when making the decision;
  3. Identify appropriate support that a person may or may not need to make a decision; and
  4. Take all practicable steps to provide any support to enable the person to make their own decision.

Needing support to make a decision is not uncommon and you should never assume that a person lacks capacity to make a decision on the sole basis that they require support to do so.

Practicable steps are the things that it is 'possible and appropriate' for you to do in order to support the person to make a decision.

They include, but are not limited to:

  1. Making sure that the person has all of the relevant information they need to make the decision;
  2. Where there are a range of choices, making sure that the person knows about them all;
  3. Explaining or providing information in a way that is easiest for the person to understand;
  4. Communicating with the person in the way that best works for them;
  5. Seeking support from others (for example with communication or to obtain specialist information);
  6. Making the decision at the optimum time (taking into account things like the person's need for rest, time to think things over and preferred environment);
  7. Delaying the decision if the person is unwell or experiencing a fluctuation in their capacity; and
  8. Making sure the person is supported to make choices or express a view.

The steps that are practicable will vary depending on the needs of the person and the urgency of presenting situation.

It is the responsibility of anyone supporting the person to establish what steps are practicable. Ideally this should be agreed with the person, but if this is not possible a decision should be made based on what is known about the person's need for support when making decisions.

A responsible person could be:

  1. A carer, family member or friend;
  2. A health professional;
  3. A social worker;
  4. An Occupational Therapist;
  5. A housing officer;
  6. A police officer.

If a decision is required about emergency medical treatment a medical professional can decide that it is not reasonable or practical to take any steps to support the person to make their own decision if:

  1. The person is not able to communicate decision at that time; and
  2. Delays in treatment would likely lead to significant harm or loss of life occurring.

In this situation the medical professional can decide that the person lacks capacity and make a decision about providing treatment in their Best Interests. In all cases of emergency treatment the medical professional must still take steps to provide information to the person about what is happening and why.

Examples of emergency situations could include when the person has experienced a heart attack, or the person is unconscious.

General guidance

Providing relevant information is essential to support a person to make their own decision.

The type of information provided must be appropriate for the decision that is to be made, and also take into account the amount of information the person normally needs to make decisions of that kind. For example;

Case 1

  1. One person that needs to make a choice about what to eat for lunch may only need to know what choices are available; but
  2. Another person may want to know how long it will take to prepare different options, the amount of food that will be provided, the temperature of the food, what their friends may be eating etc etc; and

Case 2

  1. One person being supported to make a decision about medical treatment may need to know the general purpose of treatment, the nature of the treatment and the likely consequences of either accepting or refusing the treatment; but
  2. Another person may also want to know who will be carrying out the procedure, what ward they will be on, how many people will be involved, and other finer details.

The information that you provide should be sufficient to enable the person to:

  1. Understand what the decision is and why it needs to be made;
  2. Understand the range of choices available to them;
  3. Understand the likely consequence of making or not making a decision.

When providing relevant information you should always consider:

  1. The amount of information (make sure that it is all relevant to the decision and the person);
  2. The depth of information (try not to give more detail than the person needs);
  3. The best way to provide the information;
  4. The best time to provide the information;
  5. The support or time that the person may need to understand the information.

You do not have to provide all of the relevant information yourself. It may be more appropriate for someone else to provide the information, for example a health professional or a family member.

CODE OF PRACTICE CASE EXAMPLE

Mrs Thomas has Alzheimer's Disease and lives in a care home. She enjoys taking part in activities provided at the home. Today there is a choice between going to a flower show, attending her usual pottery class or watching a DVD. Although she has capacity to choose, having to decide is making her anxious.

The care assistant carefully explains the different options. She tells Mrs Thomas about the DVD she could watch, but Mrs Thomas doesn't like the sound of it. The care assistant shows her a leaflet about the flower show. She explains the plans for the day, where the show is being held and how long it will take to get there in the minivan. She has to repeat this information several times, as Mrs Thomas keeps asking whether they will be back in time for supper. She also tells Mrs Thomas that one of her friends is going on the trip.

At first, Mrs Thomas is reluctant to disturb her usual routine. But the care assistant reassures her she will not lose her place at pottery if she misses a class. With this information Mrs Thomas can therefore choose whether or not to go on the day trip.

Relevant information for specific decisions

Case law has determined what information may be relevant in relation to specific categories of decision.

Examples include decisions relating to:

  • Care;
  • Contact;
  • Contraception;
  • Discharge from hospital;
  • Hoarding;
  • Marriage;
  • Residence;
  • Social media;
  • Sex.

39 Essex Chambers have produced a comprehensive guidance note setting out the relevant (and irrelevant) information against each category, with reference to case law for further reading.

See: Mental Capacity Guidance Note – Relevant Information for Different Categories of Decision

It is vital that you consider and take all practicable steps to ensure that:

  1. Information is communicated in the best way for the person; and
  2. The person is supported to communicate information about their decision to you.

To do this you must confirm:

  1. The person's preferred method of communication;
  2. Any support the person may need to communicate (for example from a carer, advocate or interpreter);
  3. Whether the person's communication abilities fluctuate; and
  4. If they do fluctuate, when the best time to communicate with them may be.

This information can be gathered from:

  1. The person;
  2. A family member or friend;
  3. A carer;
  4. A support worker or service provider;
  5. An advocate; or
  6. Another professional who knows the person well (for example a nurse, social worker or a Speech and Language Therapist)

If it is not clear what the best way to communicate with the person is you must still be able to demonstrate that you have taken all practicable steps to communicate appropriately. This means you should:

  1. Not make any assumptions about the most appropriate way to communicate;
  2. Consider whether a formal assessment of their communication needs by a Speech and Language Therapist is appropriate and possible (in regards to the needs of the person and the decision to be made); and
  3. If not, explore a range of potentially appropriate communication methods to determine which is best.

The range of potentially appropriate communication methods that you will need to explore will vary depending on the presenting needs of the person and the nature of the decision to be made, but could include things like:

  1. Using pictures, photographs or objects of reference to support verbal speech;
  2. Simplifying terminology;
  3. Breaking down information into smaller chunks;
  4. Using computers and technology to communicate;
  5. Using sign language or specialist communication, such as Makaton;
  6. Slowing down speech, or adjusting tone or volume;
  7. Sitting in various positions and experimenting with body language;
  8. Allowing time for the person to digest something before providing more information;
  9. Visiting relevant places to support the person to contextualise and visualise the information;
  10. Repeating information;
  11. Providing an interpreter; and
  12. Providing an advocate.
CODE OF PRACTICE CASE EXAMPLE

Mr Leslie has learning disabilities and has developed an irregular heartbeat. He has been prescribed medication for this, but is anxious about having regular blood tests to check his medication levels. His doctor gives him a leaflet to explain:

  1. The reasons for the tests;
  2. What a blood test involves;
  3. The risks in having or not having the tests; and
  4. That he has the right to decide whether or not to have the test.

The leaflet uses simple language and photographs to explain these things. Mr Leslie's carer helps him read the leaflet over the next few days and checks that he understands it.

Any information or advice that you give to a person must be objective and balanced. This means that you must:

  1. Explore all choices available; and
  2. Give equal weighting to all choices available; and
  3. When giving advice about likely consequences of a choice, make sure that your view is evidence based.

You must take care to ensure that you do not (or do not appear to) influence the person's decision through:

  1. The use of (or apparent use of) excessive persuasion; or
  2. The use of (or apparent use of) undue pressure, for example overbearing or dominating behaviour.

You should be mindful of the power that your position holds in the eyes of the person and others involved in supporting them, and take steps to redress any power imbalances. For example:

  1. Try not to be too authoritative;
  2. Do not dress too formally;
  3. Be aware of your body language; and
  4. Do not use jargon or complicated language.

When a person is at ease they are better placed to think things through and make an informed decision.

You should take practicable steps to ensure that the person is supported to make the decision:

  1. In a place that they feel at ease;
  2. At a time when they are best placed to make the decision; and
  3. In the presence of people in whose company they feel at ease.

Location

Wherever possible the person should be supported to make a decision at a location where they feel most comfortable, even if this is at the inconvenience of others.

Locations could include:

  1. The person's home;
  2. The home of a family member or friend;
  3. A community building (for example, a church or a café);
  4. A 'relevant' location (a location related to the decision e.g. a hospital or proposed care home); or
  5. An office environment (for example, a social work office).

You should never make an assumption about where the best location for a person may be, but you should consider:

  1. The level of distraction or interruptions;
  2. The level of noise; and
  3. The level of privacy offered  by the location

In all circumstances care should be taken to ensure:

  1. The privacy of the person is respected;
  2. The dignity of the person is upheld.

Timing

The person should, wherever possible be supported to make a decision when:

  1. They are most alert;
  2. They are well;
  3. They are not experiencing a fluctuation in their capacity; and
  4. They have time to consider the information and make the decision.

You should establish:

  1. If there is time of day when the person is least/most alert;
  2. The amount of time that the person is likely to require to process the information and make the decision;
  3. If the person is taking any medication, whether this affects their memory or concentration;
  4. If the person is unwell, whether it would be better to wait until they are well;
  5. If the person is experiencing a fluctuation in capacity, whether they are likely to be able to make a decision again in the foreseeable future.

You should take steps to delay the decision if the timing is not right for the person and the need to make a decision is not urgent.

If you have established that the person may become confused or overwhelmed by the information you need to provide you should:

  1. Limit the amount of information that you provide at any one time
  2. Not rush;
  3. Repeat information as required;
  4. Allow time for the person to digest the information and ask any questions;
  5. Factor in breaks; and
  6. If possible, extend the timeframe for the decision to be made as required.

If not clear which time of day is best for the person you should be prepared to try various times of day until you have established this.

The presence of others

Wherever possible the person should be supported to make a decision in the presence of those persons in whose company they feel at ease.

The presence of others could either:

  1. Reduce the person's anxiety and help them to think things through; or
  2. Be intrusive and inhibit them from making a free choice.

You should take steps to establish if there is anyone:

  1. Who the person wants to be present;
  2. Who the person does not want to be present;
  3. Who it would be beneficial to be part of the decision; and
  4. If so, with the person's consent involve them.

If the person has identified anyone that they do not want to be present (either before the decision needs to be made or during) you should not carry out (or continue) the assessment in the presence of that person.

If the person does not already know you, you should take steps to support them to feel at ease in your company, for example:

  1. Spending some time with the person to build a rapport; or
  2. Being introduced to the person by somebody they trust.

Sometimes people will be more comfortable making a decision if they have the support of another person to do so.

There is no duty under the Mental Capacity Act to provide an independent advocate to support a person with capacity (or who has not yet been deemed to lack capacity) to make their own decision.

However, there is a duty to take all practicable steps to support them to make the decision. As such you should:

  1. Consider whether the support of another person would be beneficial to help the person make the decision; and
  2. If so, consider whether there is anyone from within the person's informal network who may be appropriate to support them ( a friend, family member or carer); and
  3. If so, take steps to arrange for them to do so; and
  4. If not, consider whether the provision of an advocate is practicable (appropriate and possible); and
  5. If so, make arrangements to provide the advocate subject to the person's consent.

You must be satisfied that anyone who supports the person to make a decision is not going to influence their decision through:

  1. The use of excessive persuasion; or
  2. The use of undue pressure, for example overbearing or dominating behaviour.

Sometimes decisions have to be made in circumstances that can be both challenging for the person, but also for the practitioner or person supporting them to make the decision. For example:

  1. Following the death of a carer;
  2. Following a serious health diagnosis;
  3. If the person is (or is likely to be) anxious about the decision;
  4. If the person is responding (or is likely to respond) unfavourably to the decision;
  5. If none of the choices available are preferable (or likely to be preferable) to the person.

Even though the situation is challenging, you must still take all practicable steps to support the person to make the decision that needs to be made. This includes:

  1. Making sure that the person has all of the relevant information they need to make the decision; and
  2. Where there are a range of choices, making sure that the person knows about them all.

When deciding how to provide information in a challenging situation you should specifically consider:

  1. The most sensitive way to do so;
  2. The amount of information you provide, so as not to overwhelm the person; and
  3. Any emotional support the person may need, either whilst information is provided or afterwards.
NEED TO KNOW

Remember, one of the main functions of the Mental Capacity Act is to protect the autonomy of people who have capacity to make their own decisions.

Put simply this means either:

  1. Allowing people who can make their own decision to do so; or
  2. Providing support to people to enable them to make their own decision.

If the person has experienced a significant or traumatic event prior to needing to make the decision you should consider delaying the decision to allow for them to access any:

  1. Therapeutic support they may need;
  2. For the effects of any medication to take place

If you do not take all practicable steps and subsequently decide that the person lacks capacity any subsequent decision that you make on their behalf is not likely to be a lawful decision.

If the person declines to make a decision after practicable steps have been taken they must be presumed to have capacity to do so if they:

  1. Have a general understanding of what decision needs to be made and why;
  2. Have a general understanding of the consequences of making, or not making the decision;
  3. Are able to understand, remember and use the information provided to them when making the decision; and
  4. Are able to communicate the decision.

The purpose of principle 3 in practice is to prevent you from:

  1. Making assumptions about what may or may not be right for a person; and
  2. Applying your own values and beliefs (or the values and beliefs of society) to the person's situation.

It is important you recognise that every decision a person makes will be influenced by their:

  1. Attitudes;
  2. Beliefs;
  3. Values; and
  4. Preferences.

It is not your place (or the place of anyone else) to judge whether or not:

  1. A person's attitudes, values, beliefs or preferences are right or wrong; or
  2. Whether the decision that a person makes based on them is wise or unwise.

An unwise decision is any decision made by the person that you, or anyone else thinks is not the best decision for them.

If a person makes an unwise decision this must not in itself be taken as an indicator that they lack capacity to make the decision.

CODE OF PRACTICE CASE EXAMPLE

Mr Garvey is a 40 year old man with a history of mental health problems. He sees a Community Psychiatric Nurse (CPN) regularly. Mr Garvey decides to spend £2,000 of his savings on a camper van to travel around Scotland for 6 months. His CPN is concerned that it will be difficult to give Mr Garvey continuous support and treatment while travelling, and that his mental health might deteriorate as a result.

However, having talked it through with his CPN, it is clear that Mr Garvey is fully aware of these concerns and has the capacity to make this particular decision. He has decided he would like to have a break and thinks this will be good for him.

Just because, in the CPN's opinion, continuity of care might be a wiser option, it should not be assumed that Mr Garvey lacks the capacity to make this decision for himself.

There may be cause for concern if someone:

  1. Repeatedly makes an unwise decision that puts them at serious risk of harm, abuse or exploitation; or
  2. Makes a particular unwise decision that is obviously irrational or out of character.

Principle 2 must be applied and, if the person is still making unwise decisions as set out above, a mental capacity assessment should be carried out.

Coercion and undue influence

The person may be subject to coercion or undue influence if they find it difficult to make a decision but are not deemed to lack capacity (following a mental capacity assessment).

If this is the case a safeguarding concern may need to be raised in order to protect them from the effects of the coercive or controlling behaviour of others.

Last Updated: February 5, 2024

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