Quality standard

Quality statement 2: Advance care planning

Quality statement 2: Advance care planning

Quality statement

Adults approaching the end of their life have opportunities to discuss advance care planning. [new 2021]

Rationale

Advance care planning gives people the opportunity to have meaningful, person-led discussions that allow them to make specific decisions and plans for their future care within a structured framework and while they have the capacity to do so. This should happen after a holistic needs assessment to ensure that it fully takes into account all of the things that are important to the person.

Advance care planning is an ongoing process, so the advance care plan may change over time, based on the person's circumstances and wishes. It is important that the advance care plan is documented and updated during each discussion to ensure the person's current plans are in place. Early planning for care at the end of life helps to ensure that carers, families and professionals are aware of a person's wishes while they are still fully able to communicate them.

Quality measures

The following measures can be used to assess the quality of care or service provision specified in the statement. They are examples of how the statement can be measured and can be adapted and used flexibly.

Some routinely collected national data for these measures has been identified. Where there is no routinely collected national data, some examples of potential data sources have been suggested.

Structure

a) Evidence of local arrangements to ensure that adults approaching the end of their life have opportunities to discuss advance care planning.

Data source: Data can be collected from information recorded locally by health and social care practitioners and provider organisations, for example, from service specifications or local protocols on advance care planning.

b) Evidence of local arrangements to ensure that advance care planning for adults approaching the end of their life takes into account their holistic needs assessment.

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from local protocols on advance care planning.

Process

a) Proportion of adults approaching the end of their life who have documented discussions about advance care planning.

Numerator – the number in the denominator who have documented discussions about advance care planning.

Denominator – the number of adults approaching the end of their life.

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from patient records and palliative care registers. The National Audit of Care at the End of Life measures the number of people with an advance care plan on arrival at their final admission to hospital.

b) Proportion of adults approaching the end of their life whose documented advance care plan takes into account their holistic needs assessment.

Numerator – the number in the denominator whose documented advance care plan takes into account their holistic needs assessment.

Denominator – the number of adults approaching the end of their life who have a documented advance care plan.

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example from local audit of patient records.

Outcome

Satisfaction of adults approaching the end of their life with the support they receive to plan their future care.

Numerator – the number in the denominator who are satisfied with the support they receive to plan their future care.

Denominator – the number of adults approaching the end of their life.

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, through face-to-face discussions with adults approaching the end of their life and their carers, from local patient and carer experience surveys, and from bereavement surveys.

What the quality statement means for different audiences

Service providers (such as care homes, hospices, community care, mental health care, social care, primary care, secondary care and tertiary care) ensure that systems are in place to give adults approaching the end of their life opportunities to have discussions about advance care planning. The staff carrying this out are trained to recognise when adults are approaching the end of their life and to have these person-led discussions.

Health and social care practitioners (such as care home staff, social workers, mental health clinicians, GPs, specialists and nurses) give adults approaching the end of their life opportunities to discuss advance care planning that takes into account their holistic needs assessment. They ensure that advance care planning is an ongoing process, and that advance care plans are reviewed as the person's condition, circumstances or wishes change. They ensure that if the person does not wish to have this discussion at all, this is recorded and their wishes respected.

Commissioners (such as clinical commissioning groups, local authorities and NHS England) ensure that that they commission services in which adults approaching the end of their life are offered advance care planning, taking into account the holistic needs assessment, on an ongoing basis as their condition, circumstances or wishes change. The services they commission ensure that their staff are trained to discuss and record advance care planning, including if the person does not wish to have the discussion at all.

Adults approaching the end of their life are given opportunities to talk to health or social care staff about the things that are important to them and use this to help plan for the care and treatment they want in the future. As their wishes may change over time, adults approaching the end of their life will be able to have these conversations on a number of occasions, if they want to, to ensure their plans reflect their current wishes. If they do not feel ready to have this discussion, the person can have this discussion at a later date. If they do not wish to have this discussion at all, this is recorded and their wishes respected.

Source guidance

End of life care for adults: service delivery. NICE guideline NG142 (2019), recommendation 1.6.1

Definitions of terms used in this quality statement

Adults approaching the end of life

Adults in the final weeks and months of life, although for people with some conditions, this could be months or years.

This includes people with:

  • advanced, progressive, incurable conditions

  • general frailty and coexisting conditions that mean they are at increased risk of dying within the next 12 months

  • existing conditions if they are at risk of dying from a sudden acute crisis in their condition

  • life-threatening acute conditions caused by sudden catastrophic events.

[NICE's guideline on end of life care for adults, terms used in this guideline]

Advance care planning

Advance care planning is a voluntary process of discussion about future care between an individual and their care providers, irrespective of discipline.

An advance care planning discussion might include:

  • the individual's concerns and wishes

  • their important values or personal goals for care

  • their understanding about their illness and prognosis

  • their preferences and wishes for types of care or treatment that may be beneficial in the future and the availability of these.

Advance care planning is one part of the process of personalised care and support planning.

[NICE's guideline on end of life care for adults, terms used in this guideline]

Holistic needs assessment

An assessment that considers all aspects of a person's wellbeing, their spiritual and health and social care needs. Undertaking a holistic needs assessment ensures that the person's goals and wishes, concerns and problems are identified so that support can be provided to address them. There are validated tools that can be used to support the assessment process.

[NICE's guideline on end of life care for adults, terms used in this guideline and expert opinion]

Equality and diversity considerations

A person's culture and religious beliefs may have a significant influence on whether they wish to discuss end of life and advance care planning. Practitioners need to approach these discussions in a sensitive way. If people do not want to speak about their future needs and care arrangements, this should be respected and clearly recorded.

Adults approaching the end of their life should be supported to discuss advance care planning in a meaningful way. They should be provided with information in a format that they can easily understand themselves, or with support, so they can communicate effectively with health and social care practitioners. The information should be in a format that suits their needs and preferences. It should be accessible to people who do not speak or read English, and it should be culturally and age appropriate, taking into account the person's level of health literacy. People should have access to an interpreter or advocate if needed.

For people with additional needs related to a disability, impairment or sensory loss, information should be provided as set out in NHS England's Accessible Information Standard or the equivalent standards for the devolved nations.