Decision-making and mental capacity

This NICE guideline aims to help practitioners to implement the principles of the Mental Capacity Act and to improve the quality of the decision-making support they provide. It applies to a range of decisions, including care, support and treatment, financial matters and day-to-day living, but recognises that practitioners may need to provide rapid assistance in emergencies

One of the areas that a Care Quality Commission (CQC) inspection covers is how practices deal with vulnerable patients, including safeguarding issues and adherence to the Mental Capacity Act. And although these subjects are covered in mandatory training for general practice nurses, there are often gaps in knowledge and understanding and putting these into practice.

The CQC estimates that around 2 million people in England and Wales may lack the capacity to make certain decisions for themselves at some point because of illness, injury or disability. The Mental Capacity Act 2005[1] was designed to empower and protect individuals in these circumstances. However, the CQC has identified serious issues with the practical implementation of the Act.

So NICE has produced guidance that aims to help healthcare professionals implement the principles of the Act.² The guideline makes recommendations for best practice in assessing and supporting people aged 16 years and older with decision-making activities. It helps to ensure that people are supported to make decisions for themselves when they have the mental capacity to do so, and where they lack the mental capacity to make specific decisions, they remain at the centre of the decision-making process. The guideline supports the principles introduced by the Act1 and explained in the accompanying Code of Practice.³

These are:

1. A person must be assumed to have capacity unless it is established that they lack capacity.

2. A person is not to be treated as unable to make a decision unless all practicable steps to help them to do so have been taken without success.

3. A person is not to be treated as unable to make a decision merely because they make an unwise decision.

4. An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests.

5. Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person's rights and freedom of action.

The guideline is intended to help health and social care staff to implement these principles and improve the quality of the decision-making support they provide.

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 above. As a starting point they must assume capacity unless there is evidence to suggest an assessment is required.

Principle 2 of the Mental Capacity Act 2005 requires practitioners to help a person make their own decision, before deciding that they are unable to make a decision. Supporting decision-making capacity effectively requires a collaborative and trusting relationship between the practitioner and the person. It does not involve trying to persuade or coerce a person into making a particular decision, and must be conducted in a non-discriminatory way. It requires practitioners to understand what is involved in a particular decision, and to understand what aspects of decision-making a person may need support with, and why.

This may mean helping a person with their memory or communication, helping them fully understand and weigh up the information relevant to a decision, or helping to reduce their distress.

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.
• Practitioners should also tell people about advocacy services as a potential source of support for decision-making

If they would like someone to support them, find out from the person who needs support who this should be. Be aware of the possibility that the nominated person may be exercising undue influence, and take advice from a safeguarding lead if there is a concern.

At times, the person being supported may wish to make a decision that appears unwise, but they are not to be treated as unable to make a decision merely because they make an unwise decision.

Practitioners should take a personalised approach, accounting for any reasonable adjustments and the wide range of factors that can have an impact on a person's ability to make a decision. These should include:

• The person's physical and mental health condition
• The person's communication needs
• The person's previous experience (or lack of experience) in making decisions
• The involvement of others and being aware of the possibility that the person may be subject to undue influence, duress or coercion regarding the decision
• Situational, social and relational factors
• Cultural, ethnic and religious factors
• Cognitive (including the person's awareness of their ability to make decisions), emotional and behavioural factors, or those related to symptoms
• The effects of prescribed drugs or other substances.

Practitioners should be aware of the pros and cons of supporting decision-making. The benefits could include increased autonomy, but when talking about potentially upsetting issues including declining health or end of life, it can be potentially distressing, and the person may feel overwhelmed with having to make a difficult decision at a difficult time and having to deal with possibly conflicting opinions.

Practitioners should make a written record of the decision-making process.

Advance care planning involves helping people to plan for their future care and support needs, including medical treatment, and therefore to exercise their personal autonomy as far as possible. This should be offered to everyone who is at risk of losing capacity (for example through progressive illness), as well as those who have fluctuating capacity (for example through mental illness).

LACK OF CAPACITY

Under the Mental Capacity Act, capacity is decision-specific, and an individual is assumed to have capacity unless, on the balance of probabilities, proven otherwise.

To lack capacity, a person must be unable to make a decision because of an impairment or disturbance in the functioning of the mind or brain. The inability to make a decision must not be due to other factors, for example, the person being placed under duress or feeling overwhelmed by the suddenness and seriousness of a decision.

A lack of capacity cannot be established based merely by reference to the person's condition or behaviour. It can only be established if their condition also prevents them from understanding or retaining information about the decision, using or weighing it, or communicating their decision. It cannot be established unless everything practicable has been done to support the person to have capacity, and it should never be based on the perceived wisdom of the decision the person wishes to make.

Effective assessments are thorough, proportionate to the complexity, importance and urgency of the decision, and performed in the context of a trusting and collaborative relationship.

Practitioners should take a structured, person-centred, empowering and proportionate approach to assessing a person's capacity to make decisions, including everyday decisions.

Single tools (such as the Mini-Mental State Examination) that are not specifically designed to assess capacity may yield relevant information but should not be used as the basis for assessing capacity.

Assessing capacity may include involving an interpreter, speech and language therapist, someone with sensory or specialist communication skills, clinical psychologists or other professionals.

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.

BEST INTEREST

When a person does not have capacity to make a decision, all actions and decisions taken by practitioners must be done or made in the person's best interests.

When making a decision under the Mental Capacity Act 2005, a decision maker must be identified. This could be an attorney appointed by the individual or a Court Appointed Deputy with relevant decision-making powers, or the practitioner or team who is responsible for providing a health or social care intervention. The decision maker is responsible for determining the person's best interests. Wherever possible, this means helping the person who lacks capacity to be involved in the decision-making process, consulting with their family, carers and Independent Mental Capacity Advocates, and seeking or establishing the person's known wishes, preferences and values, placing these at the heart of the decision-making process where possible.

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.

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)
• NICE says health and social care organisations should provide toolkits to support staff to carry out best interest decisions, so approach your CCG to find out what is available in your locality.

More detailed information on conducting an assessment is provided in the full guideline,2 so if this is part of your role, be sure to read it.

References

1. The Mental Capacity Act, 2005 https://www.legislation.gov.uk/ukpga/2005/9/contents

2. NICE NG108. Decision-making and mental capacity, October 2018. https://www.nice.org.uk/guidance/ng108/chapter/Recommendations#assessment-of-mental-capacity

3. The Mental Capacity Act Code of Practice https://www.gov.uk/government/publications/mental-capacity-act-code-of-practice