Quality standard
Quality statement 2: Advance care plans
Quality statement 2: Advance care plans
Quality statement
People aged 16 and over at risk of losing capacity to make decisions, and those with fluctuating capacity, are given the opportunity to discuss advance care planning at each health and social care review.
Rationale
Advance care planning involves offering people opportunities to consider and discuss their future care and support needs and make plans while they have capacity to make decisions. It may involve appointing an advocate, which can increase the chances of the person's wishes being known and respected.
Opportunities to discuss advance care plans should be offered to people at risk of losing capacity (for example through progressive illness), as well as those who have fluctuating capacity (for example through mental illness). If people do not want to speak about their future needs and care arrangements, this should be respected and clearly recorded. However, people should know that they can discuss these whenever they wish. Reviewing and updating existing advance care plans regularly ensures that the recorded wishes stay valid, applicable and true to the person.
The quick guide to advance care planning on the NICE website can provide more information.
Quality measures
Structure
Evidence of local arrangements to ensure that people aged 16 and over at risk of losing capacity to make decisions, and those with fluctuating capacity, have ongoing opportunities to discuss their advance care plans while they have capacity.
Data source: Local data collection, for example local protocols or recording templates.
Process
Everyone who is at risk of losing capacity or has fluctuating capacity should be offered an opportunity to discuss advance care planning. For measurement purposes, the reviews that should be included are significant reviews of the care and support provided to the person and those carried out as a result of substantial changes to the person's health or circumstances. It does not mean every appointment the person has with a health or social care practitioner.
a) Proportion of health and social care reviews for people aged 16 and over who are at risk of losing capacity, with a documented discussion about advance care planning.
Numerator – the number in the denominator with a documented discussion about advance care planning.
Denominator – the number of health and social care reviews for people aged 16 and over who are at risk of losing capacity.
Data source: Local data collection, for example local audit of individual care plans.
b) Proportion of health and social care reviews for people aged 16 and over with fluctuating capacity, with a documented discussion about advance care planning.
Numerator – the number in the denominator with a documented discussion about advance care planning.
Denominator – the number of health and social care reviews for people aged 16 and over with fluctuating capacity.
Data source: Local data collection, for example local audit of individual care plans.
c) Proportion of people aged 16 and over at risk of losing capacity who have a documented discussion about making advance statements.
Numerator – the number in the denominator who have a documented discussion about making advance statements.
Denominator – the number of people aged 16 and over at risk of losing capacity.
Data source: Local data collection, for example local audit of patient records or care plans.
d) Proportion of people aged 16 and over with fluctuating capacity who have a documented discussion about making advance statements.
Numerator – the number in the denominator who have a documented discussion about making advance statements.
Denominator – the number of people aged 16 and over with fluctuating capacity.
Data source: Local data collection, for example local audit of patient records or care plans.
e) Proportion of people aged 18 and over at risk of losing capacity who have a documented discussion about making advance decisions or lasting powers of attorney.
Numerator – the number in the denominator who have a documented discussion about making advance decisions or lasting powers of attorney.
Denominator – the number of people aged 18 and over at risk of losing capacity.
Data source: Local data collection, for example local audit of patient records or care plans.
f) Proportion of people aged 18 and over with fluctuating capacity who have a documented discussion about making advance decisions or lasting powers of attorney.
Numerator – the number in the denominator who have a documented discussion about making advance decisions or lasting powers of attorney.
Denominator – the number of people aged 18 and over with fluctuating capacity.
Data source: Local data collection, for example local audit of patient records or care plans.
Outcome
a) Proportion of people aged 16 and over at risk of losing capacity who feel supported to make decisions about their health and social care support.
Numerator – the number in the denominator who feel supported to make decisions about their health and social care support.
Denominator – the number of people aged 16 and over at risk of losing capacity.
Data source: Local data collection, for example a survey of people with a long-term condition, or a progressive or life-limiting illness.
b) Proportion of people aged 16 and over with fluctuating capacity who feel supported to make decisions about their health and social care support.
Numerator – the number in the denominator who feel supported to make decisions about their health and social care support.
Denominator – the number of people aged 16 and over with fluctuating capacity.
Data source: Local data collection, for example a survey of people with progressive illness or mental health problems.
What the quality statement means for different audiences
Service providers (such as community services, local authorities, private care providers, GPs and hospitals) ensure that systems are in place to offer support to people at risk of losing capacity (for example through progressive illness) or people with fluctuating capacity (for example through mental illness) to make decisions, and to develop and review their advance care plans regularly. Service providers also develop standard protocols and plans for joint working and, with the person's consent, the sharing of information on advance care plans between practitioners, advocates, trusted people and families. Protocols and plans developed by service providers should reflect the optional nature of advance care planning.
Health and social care practitioners (such as social workers, care staff, GPs, doctors, nurses and therapists) offer people who are at risk of losing capacity or have fluctuating capacity opportunities to discuss, make and regularly review advance care plans. They support them in a sensitive manner to consider their decisions about future care and support. They also respect that some people do not wish to have these discussions. For people aged 18 and over this can include making advance decisions or lasting powers of attorney. The practitioners provide the person with clear and accessible information to help them consider these decisions. With the person's consent, they involve carers, family, friends or advocates in regular reviews of advance care plans.
Commissioners (such as local authorities, clinical commissioning groups, NHS England) develop standard protocols and plans for joint working and sharing of information on advance care plans between practitioners, advocates, trusted people and families, if this is what the person's wish is. They ensure that protocols and plans reflect the fact that people have a choice about whether and how to participate in advance care planning. They commission training on advance care planning, including advance decisions to refuse treatment and lasting powers of attorney for people aged 18 and over. They also demonstrate that protocols are in place and that training is available by including the offer of advance care planning in their performance monitoring frameworks.
People aged 16 and over who may not be able to make decisions in the future are offered help with making a plan for their future care, called an 'advance care plan', if they want to have one. They can update this plan every time their treatment or support is reviewed.
Source guidance
Decision-making and mental capacity. NICE guideline NG108 (2018), recommendation 1.3.15
Definitions of terms used in this quality statement
Advance care planning
Advance care planning with people who may lack mental capacity in the future is a voluntary process of discussion about future care between the person and their care providers. If the person wishes, their family, friends, legal representative or advocate may be included in the discussion. With the person's agreement this discussion is documented, regularly reviewed and communicated to key persons involved in their care. [NICE's guideline on decision-making and mental capacity, terms used in the guideline]
Health and social care review
A health and social care review includes scheduled reviews carried out by health and social care practitioners and reviews carried out as a result of substantial changes in the person's health or circumstances to ensure that the person's care and support continue to meet their needs. It does not mean every appointment the person has with a health and social care practitioner. [Expert opinion]
Mental capacity
The concept of capacity under the Mental Capacity Act 2005 is relevant to many decisions including care, support and treatment, financial matters and day-to-day living. Capacity is decision-specific, and an individual is assumed to have capacity unless, on the balance of probabilities, it is established otherwise. To lack capacity within the meaning of the Mental Capacity Act 2005, 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 because of undue influence, coercion or pressure.
A lack of capacity can only be established if the condition prevents the person from understanding, retaining, using or weighing information about the decision, 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 merely on the basis that the decision made is unwise. [Adapted from NICE's guideline on decision-making and mental capacity, section 1.4 on assessment of mental capacity]
People with fluctuating capacity
People who have a problem or condition that gets worse occasionally and affects their ability to make decisions. For example, someone who has manic depression may have a temporary manic phase which causes them to lack capacity to make financial decisions, leading them to get into debt even though at other times they are perfectly able to manage their money. A person with a psychotic illness may have delusions that affect their capacity to make decisions at certain times but disappear at others. [Mental Capacity Act Code of Practice]