Decision-making and mental capacity

Service providers and commissioners should ensure that practitioners undergo training to help them to apply the Mental Capacity Act 2005 and its Code of Practice. Training should be tailored to the role and responsibilities of the practitioner and cover new staff, pre‑registration, and continuing development and practice supervision for existing staff. Where appropriate, training should be interdisciplinary, involve experts by experience and include:

• the statutory principles of the Mental Capacity Act 2005

• the importance of seeking consent, and how to proceed if a person might lack capacity to give or refuse their consent to any proposed intervention

• how and when to have potentially difficult conversations about loss of autonomy, advance care planning or death

• required communication skills for building trust and working with people who may lack capacity

• clarity on roles and responsibilities

• the advantages, challenges and ethics of advance care planning, and how to discuss these with the person and their carers, family and friends

• the processes and law surrounding advance decisions to refuse treatment and lasting powers of attorney/court appointed deputies

• condition-specific knowledge related to advance care planning, where appropriate

• the conduct of decision- and time-specific capacity assessments

• the process of best interests decision-making in the context of section 4 of the Mental Capacity Act 2005 and associated guidance

• the role of Independent Mental Capacity Advocates in best interests decision-making

• how to direct people to sources of advice and information.

All health and social care organisations should:

• develop local policy and guidance about which interventions, tools and approaches will be used to support decision-making

• identify or devise specific tools to help health and social care practitioners assess where appropriate and necessary the mental capacity of the people they are working with and audit the tools against adherence to the Mental Capacity Act Code of Practice

• train relevant practitioners in the use of these tools.

Co-develop policies and Mental Capacity Act 2005 training programmes with people who have experience of supported decision-making and of having their mental capacity assessed, and their carers, family and friends.

Practitioners involved in making decisions regarding individuals who lack capacity or supporting decision-making in individuals who have capacity must follow the 5 key principles set out in section 1 of the Mental Capacity Act 2005. As a starting point they must assume capacity unless there is evidence to suggest an assessment is required.

When giving information about a decision to the person:

• it must be accessible, relevant and tailored to their specific needs

• it should be sufficient to allow the person to make an informed choice about the specific decision in question

• it should be supported by tools such as visual materials, visual aids, communication aids and hearing aids, as appropriate.

Record and update information about people's past and present wishes, beliefs and preferences in a way that practitioners from multiple areas (for example care and support staff, paramedics) can access and update. This information should be used to inform advance planning, supported decision-making and best interests decision-making.

Practitioners should tell people about advocacy services as a potential source of support for decision-making, including:

• enabling them to make their own key decisions, for example, about their personal welfare, medical treatment, property or affairs

• facilitating their involvement in decisions that may be made, or are being made under the Mental Capacity Act 2005.

As a minimum, independent advocacy must be offered by local authorities as described in the Care Act 2014, Mental Capacity Act 2005 and Mental Health Act 2007.

This recommendation is adapted from the NICE guideline on learning disabilities and behaviour that challenges: service design and delivery.

Consider expanding the commissioning of statutory Independent Mental Capacity Advocates.

Commissioners, public bodies and providers of statutory advocacy services should work closely to ensure that:

• statutory duties on public bodies to refer to and involve advocacy are consistently adhered to and monitored and

• failures in the duty to refer to statutory advocacy are addressed.

Relevant commissioners and providers should work with public bodies and providers to increase investment in training for statutory independent mental capacity and other statutory advocates in key areas, in order to ensure they are able to support:

• people who have communication difficulties and

• Independent Mental Capacity Advocates to have expertise in specific areas that require additional skills and knowledge – for example working with people with impaired executive function arising from acquired brain injury, mental illness, dementia or other illness.

At the start of the decision-making process, practitioners should clearly determine what information they need to cover the salient details of the decision they are supporting the person to make. This will depend on the nature and complexity of the decision itself.

Offer tailored, accessible information to the person being supported. This should be about the process and principles of supported decision-making as well as about the specific decision.

When providing the person with information to support a particular decision:

• do so in line with the NHS Accessible Information Standard

• support them to identify, express and document their own communication needs

• ensure that options are presented in a balanced and non-leading way.

Record the information that is given to the person during decision-making. Give the person an opportunity to review and comment on what is recorded and write down their views.

Consider tailored training programmes for the person, to provide information for specific decisions – for example sexual education programmes and medication management.

Support people to communicate so that they can take part in decision-making. Use strategies to support the person's understanding and ability to express themselves in accordance with paragraphs 3.10 and 3.11 of the Mental Capacity Act Code of Practice.

Involve significant and trusted people in supporting decision-making, in line with the person's preferences and:

• have due regard for the principle of confidentiality set out in paragraph 3.15 of the Mental Capacity Act Code of Practice

• ensure that this support is free from coercion or undue influence, for example that it does not undermine the person's ability to understand, retain, use and weigh information and express a choice.
  
  If there are no significant trusted people, or no-one willing to take on this role, think about involving an advocate.

Practitioners should be aware of the pros and cons of supporting decision-making and be prepared to discuss these with the person concerned. The benefits could include increased autonomy, being better informed and sharing decisions with people interested in their welfare. However, practitioners should also be aware that talking about potentially upsetting issues including declining health or end of life can be potentially distressing, and a person may feel overwhelmed with having to make a difficult decision at a difficult time and having to deal with possibly conflicting opinions.

Give people time during the decision-making process to communicate their needs and feel listened to. Be aware that this may mean meeting with the person for more than 1 session.

Practitioners should increase the person's involvement in decision-making discussions by using a range of interventions focused on improving supported decision-making.

Where possible and relevant, ensure that the same practitioner provides continuous support to the person as they make different decisions at different points in time.

Health and social care practitioners should refer to other services (for example speech and language therapy, clinical psychology and liaison psychiatry) that could enable the person to make their decision when their level of need requires specialist input. This is especially important:

• when the person's needs in relation to decision-making are complex

• if the consequences of the decision would be significant (for example a decision about a highly complex treatment that carries significant risk).

Practitioners should make a written record of the decision-making process, which is proportionate to the decision being made. Share the record with the person and, with their consent, other appropriate people. Include:

• what the person is being asked to decide

• how the person wishes to be supported to make the decision

• steps taken to help the person make the decision

• other people involved in supporting the decision

• information given to the person

• whether on the balance of probabilities a person lacks capacity to make a decision

• key considerations for the person in making the decision

• the person's expressed preference and the decision reached

• needs identified as a result of the decision

• any further actions arising from the decision

• any actions not applied and the reasons why not.

Organisations should ensure they can demonstrate compliance with principle 2, section 1(3) of the Mental Capacity Act 2005 by monitoring and auditing:

• person-reported outcomes, including the extent to which the person experiences collaboration and empowerment when making important decisions and the extent to which they experience support for their decision-making

• practitioner-reported outcomes, including the frequency and quality of steps they have taken to support decision-making

• process outcomes, including the frequency and quality of formal recording of steps taken to support decision-making and the use of overt and covert coercion during decision-making.

Healthcare commissioners and providers should:

• develop standard protocols and plans for joint working and sharing of information on advance care plans between practitioners, people and families

• ensure that protocols and plans reflect the optional nature of advance care planning

• commission training on advance care planning, including advance decisions to refuse treatment and a Lasting Power of Attorney

• demonstrate that protocols are in place and training is available by including advance care planning in audits.

Offer people accessible verbal and written information about advance care planning, including how it relates to their own circumstances and conditions. All information sharing must fulfil the requirements of the NHS Accessible Information Standard.

If a person has recently been diagnosed with a long-term or life-limiting condition, give them information on:

• their condition

• the process of advance care planning

• how they can change their minds or amend the decisions they make while they retain capacity to make them

• the impact that a subsequent loss of capacity may have on decisions made

• services that will help in advance care planning.

All health and social care practitioners who come into contact with the person after diagnosis should help them to make an informed choice about participating in advance care planning. If the person wishes to engage in advance care planning, enable them to do so.

Offer the person a discussion about advance care planning:

• at the most suitable time once they receive a diagnosis likely to make advance care planning useful and

• at other times, allowing people to think through and address different issues in their own time.

Practitioners involved in advance care planning should ensure that they have access to information about the person's medical condition that helps them to support the advance care planning process. It is the practitioner's responsibility to identify what information they need.

When approaching discussions about advance care planning, practitioners should:

• be sensitive, recognising that some people may prefer not to talk about this, or prefer not to have an advance care plan

• be prepared to postpone discussions until a later date, if the person wishes

• recognise that people have different needs for knowledge, autonomy and control

• talk about the purpose, advantages and challenges of this type of planning

• consider the use of checklists to support discussions.

If the person has given consent for carers, family and friends or advocates to be involved in discussions about advance care planning, practitioners should take reasonable steps to include them.

Health and social care practitioners should help everyone to take part in advance care planning and co‑produce their advance care plan if they choose to have one (including people with fluctuating or progressive conditions). They should:

• work with the person to identify any barriers to their involvement, and investigate how to overcome these

• help them to communicate by providing communication support appropriate to their needs (for example communication aids, advocacy support, interpreters, specialist speech and language therapy support, involvement of family members or friends).

During advance care planning discussions, practitioners should:

• take into account the person's history, social circumstances, wishes and feelings, values and beliefs (including religious, cultural and ethnic factors), aspirations and any other factors they may consider important to them

• help the person to anticipate how their needs may change in the future.

Practitioners must ensure that all notes made on advance care planning are contemporaneous. In addition:

• notes should be agreed with the person at the time and

• consent should be sought from the person to share the information with other people as appropriate.

Provide the person with an accessible document that records their wishes, beliefs and preferences in relation to advance care planning and which they may take with them to show different services. It may include who the person wants to have involved in decision-making or their preferences for issues such as treatment, support or accommodation.

Practitioners should share any advance care plans in a clear and simple format with everyone involved in the person's care, if the person has given consent.

Practitioners should ensure that information about a person's advance care plan is, with their consent, transferred between services when their care provider changes.

Review advance care plans at reviews of treatment or support, while the person has capacity, and amend as necessary, if the person wishes.

When people are reaching the end of life, give them the opportunity to review or develop an advance care plan if they haven't already done so.

Practitioners and individuals may wish to consider the use of advance care planning in the context of joint crisis planning.

Offer joint crisis planning to anyone who has been diagnosed with a mental disorder and has an assessed risk of relapse or deterioration, and anyone who is in contact with specialist mental health services. The offer should be documented and, if the person accepts it, the plan should be recorded.

Assess mental capacity in line with the process set out in section 2 of the Mental Capacity Act 2005 and section 3 of the Mental Capacity Act 2005.

While the process applies to all decisions that fall within the scope of the Mental Capacity Act 2005, both large and small, the nature of the assessment and the recording of it should be proportionate to the complexity and significance of that decision.

Assessors should have sufficient knowledge of the person being assessed (except in emergencies or where services have had no previous contact with the person) to be able to:

• recognise the best time to make the decision

• provide tailored information, including information about the consequences of making the decision or of not making the decision

• know whether the person would be likely to attach particular importance to any key considerations relating to the decision.

Practitioners should be aware that people can be distressed by having their capacity questioned, particularly if they strongly disagree that there is a reason to doubt their capacity.

In preparing for an assessment, the assessor should be clear about:

• the decision to be made

• if any inability to make a decision is caused by any impairment of or disturbance in the functioning of the mind or brain in that person

• the options available to the person in relation to the decision

• what information (the salient factors) the person needs in order to be able to explore their options and make a decision

• what the person needs in order to understand, retain, weigh up and use relevant information in relation to this decision, including the use of communication aids

• how to allow enough time for the assessment, giving people with communication needs more time if needed

• how to introduce the assessment and conduct it in a way that is respectful, collaborative, non-judgmental and preserves the person's dignity

• how to make reasonable adjustments including, for example, delaying the assessment until a time when the person feels less anxious or distressed and more able to make the decision

• how to ensure that the assessment takes place at a location and in an environment and through a means of communication with which the person is comfortable

• how to identify the steps a person is unable to carry out even with all practicable support

• whether involving people with whom the person has a trusted relationship would help the assessment.

The assessor should take into account the person's decision-making history when preparing for an assessment, including the extent to which the person felt involved and listened to, the possible outcomes of that assessment, and the nature and outcome of the decisions they reached.

Practitioners must take all reasonable steps to minimise distress and encourage participation.

Where consent has been provided, health and social care practitioners should identify people who could be spoken with in order to inform the capacity assessment. For example, this may include the individual's family or friends.

Practitioners should use accessible language or information in an accessible format to explain to the person:

• that their capacity to make a particular decision is being assessed

• why their capacity is being assessed

• the outcome of that assessment

• what they can do if they are unhappy with the outcome.

Health and social care practitioners should take a structured, person-centred, empowering and proportionate approach to assessing a person's capacity to make decisions, including everyday decisions. If the assessment concludes that a person would, with appropriate support, have capacity to make their own decisions, the assessment should establish which elements of the decision-making process the person requires assistance with, in order to identify how decision-making can be supported.

Use of single tools (such as the Mini-Mental State Examination) that are not designed to assess capacity may yield information that is relevant to the assessment, but practitioners should be aware that these should not be used as the basis for assessing capacity.

Health and social care practitioners must take a collaborative approach to assessing capacity, where possible, working with the person to produce a shared understanding of what may help or hinder their communication and decision-making. This may include involving an interpreter, speech and language therapist, someone with sensory or specialist communication skills, clinical psychologists or other professionals to support communication during an assessment of capacity.

Where the person has identified communication needs, the assessor should also think about using communication tools to help with the assessment.

Practitioners should be aware that it may be more difficult to assess capacity in people with executive dysfunction – for example people with traumatic brain injury. Structured assessments of capacity for individuals in this group (for example, by way of interview) may therefore need to be supplemented by real-world observation of the person's functioning and decision-making ability in order to provide the assessor with a complete picture of an individual's decision-making ability. In all cases, it is necessary for the legal test for capacity as set out in section 2 and section 3 of the Mental Capacity Act 2005 to be applied.

If a person refuses to engage in some or all aspects of a capacity assessment, the assessor should try to establish the reasons for this and identify what can be done to help them participate fully. This may involve consulting with others involved in their care and support, reviewing records or giving the person a choice about who else can be involved.

Information gathered from support workers, carers, family and friends and advocates should be used to help create a complete picture of the person's capacity to make a specific decision and act on it.

When assessing capacity, practitioners must take account of the principle enshrined in section 1(4) of the Mental Capacity Act 2005 and not assume that the person lacks capacity because they have made a decision that the practitioner perceives as risky or unwise.

Practitioners should understand that the person has to retain information only for the purposes of making the specific decision in question, and for the period of time necessary to make the decision.

Practitioners should be aware that a person may have decision-making capacity even if they are described as lacking 'insight' into their condition. Capacity and insight are 2 distinct concepts. If a practitioner believes a person's insight/lack of insight is relevant to their assessment of the person's capacity, they must clearly record what they mean by insight/lack of insight in this context and how they believe it affects/does not affect the person's capacity.

The assessor should record any differing views on the person's capacity and how the outcome of the assessment addresses or answers those differing views.

If, following the assessment of capacity, the practitioner finds no evidence to displace the assumption of capacity, this should be documented.

If the outcome of the assessment is that the person lacks capacity, the practitioner should clearly document the reasons for this. The documentation should also make clear what impairment/disturbance of the mind or brain has been identified, the reasons why the person is unable to make a decision (with reference to section 3 of the Mental Capacity Act 2005) and the fact that the person's inability to make a decision is a direct consequence of the impairment or disturbance identified.

The person assessing mental capacity should record:

• the practicable steps they have taken to help the person make the relevant decision for themselves and any steps taken by other parties involved

• whether the person has capacity to make the decision

• if the person is assessed as lacking capacity, why the practitioner considers this to be an incapacitous decision as opposed to an unwise decision.

All assessments of mental capacity must be recorded at an appropriate level to the complexity of the specific decision being made at a particular time. This may be as a stand-alone assessment document, contained within the individual's health or social care record or in care and support plans, following local policy. The timescale for review of the assessment should be specified and recorded.

Provide the person with emotional support and information after the assessment, being aware that the assessment process could cause distress and disempowerment.

In line with the Mental Capacity Act 2005, practitioners must conduct a capacity assessment, and a decision must be made and recorded that a person lacks capacity to make the decision in question, before a best interests decision can be made. Except in emergency situations, this assessment must be recorded before the best interests decision is made.

Ensure that everyone involved in the best interests decision-making process knows and agrees who the decision maker is.

As part of the best interests decision-making process, practitioners must take all reasonable steps to help the person to provide their own views on the decision.

Health and social care services must ensure that best interests decisions are being made in line with the Mental Capacity Act 2005.

Health and social care services should:

• implement a service-wide process for recording best interests decisions and ensure that staff are aware of this and

• have clear systems in place to support practitioners to identify and locate any relevant written statement made by the person when they had capacity, at the earliest possible time.

Health and social care services should have clear systems in place to obtain and record the person's wishes and feelings in relation to a relevant decision, as well as their values and beliefs, or any other factor that would be likely to influence such a decision. Services should:

• have mechanisms in place to make these available in a timely way

• ensure that the person's personal history and personality is represented in the above.

Unless it would be contrary to the person's best interests to do so, health and social care practitioners should work with carers, family and friends, advocates, attorneys and deputies, to find out the person's values, feelings, beliefs, wishes and preferences in relation to the specific decision and to understand the person's decision-making history.

In some cases, the views of the interested parties may differ from those of the person or the decision maker. However, this does not necessarily mean it would be contrary to the person's best interests to consult them.

If a decision maker considers it helpful or necessary to convene a meeting with the relevant consultees to assist with the decision-making process, they should:

• Involve the person themselves, unless a decision is made that it would be contrary to their best interests for them to attend the meeting. Where this is the case, this decision and the reasons for it should be recorded.

• Consult carers, family, friends, advocates and any attorney or deputy about the meeting in advance, giving them time to ask questions and give their opinions, for example about how to include the person in decision-making.

• Make it clear that the purpose of the meeting is to assist the decision maker in making a decision in the person's best interests.

• Clarify the role of each person attending the meeting, especially the identities of the decision maker and the meeting chair, as these may be different people.

• Provide all information in an accessible format.

Practitioners should access information about the person informally if needed, as well as through any formal meetings.

The decision maker should ensure that all people consulted as part of the best interests decision have their views encouraged, respected and heard. This does not mean that the views of consultees should necessarily be followed; the decision maker is ultimately responsible for deciding what course of action would be in the person's best interests.

When making a decision on behalf of the person who lacks capacity, practitioners should use a range of approaches, as needed, to ensure that the person's best interests are served. This might include:

• a less formalised approach for day-to-day decisions – that is, recurring decisions being recorded in support or care plans

• a decision-making approach appropriate to the circumstances and personalised to the individual, making all reasonable adjustments

• formal best interests meetings for significant decisions:

  • if this is the most appropriate way to undertake the required consultation or

  • if the outcome of the decision is likely to have a serious impact on the person's health or wellbeing or

  • if there are likely to be conflicting opinions about the person's best interests.

Carers and practitioners must, wherever possible, find out the person's wishes and feelings in order to ensure any best interests decision made reflects those wishes and feelings unless it is not possible/appropriate to do so. Where the best interests decision ultimately made does not accord with the person's wishes and feelings, the reasons for this should be clearly documented and an explanation given. The documentation of the assessment should also make clear what steps have been taken to ascertain the person's wishes and feelings and where it has not been possible to do this, the reasons for this should be explained.

Health and social care organisations should provide toolkits to support staff to carry out and record best interests decisions. These toolkits should include:

• how to identify any decision-making instruments that would have an impact on best interests decision-making occurring (for example a Lasting Power of Attorney, advance decisions to refuse treatment, court orders)

• when to instruct an Independent Mental Capacity Advocate

• a prompt to consult interested parties (for example families, friends, advocates and relevant professionals) and a record of who they are

• guidance about recording the best interests process and decision. This may include, for example, a balance sheet, which may assist in documenting the risks and benefits of a particular decision

• instructions on what information to record, ensuring this covers:

  • a clear explanation of the decision to be made

  • the steps that have been taken to help the person make the decision themselves

  • a current assessment concluding that the person lacks the capacity to make this decision, evidencing each element of the assessment

  • a clear record of the person's wishes, feelings, cultural preferences, values and beliefs, including any advance statements

  • the concrete choices that have been put to the person

  • the salient details the person needs to understand

  • the best interests decision made, with reasons.

When making best interests decisions, explore whether there are less restrictive options that will meet the person's needs. Take into account:

• what the person would prefer, including their past and present wishes and feelings, based on past conversations, actions, choices, values or known beliefs

• what decision the person who lacks capacity would have made if they were able to do so

• all the different options

• the restrictions and freedoms associated with each option (including possible human rights infringements)

• the likely risks associated with each option (including the potential negative effects on the person who lacks capacity to make a decision – for example trauma or disempowerment).

When an Independent Mental Capacity Advocate has been instructed, they should be involved in the process until a decision has been made and implemented fully.

As people's circumstances change, review the decisions regularly to ensure that they remain in a person's best interests.

After the outcome has been decided, the decision maker should ensure that it is recorded and communicated to everyone involved and that there is opportunity for all participants to offer feedback or raise objections.

If there is a dispute about a person's best interests, resolve this, where possible, before the decision is implemented – for example through further meetings or mediation. If a dispute cannot be resolved locally, it may be necessary for the matter to be referred to the Court of Protection for a determination of the person's best interests.

Decision makers should specify a timely review of the implementation of the actions resulting from the best interests decision. If the review establishes that the best interests decision was not successfully actioned, the decision maker should take suitable steps such as:

• convening a multi-agency meeting to resolve issues leading to the best interests decision not being successfully implemented or

• reassessing and making a new best interests decision that is more achievable or

• taking steps to refer the decision to the Court of Protection or

• re-considering whether any further action is appropriate.