Quality standard

Quality statement 1: Identification

Quality statement 1: Identification

Quality statement

Adults who are likely to be approaching the end of their life are identified using a systematic approach. [2011, updated 2021]

Rationale

Using a systematic approach enables healthcare professionals to identify adults who are likely to be approaching the end of their life in a timely manner. Once recognised as approaching the end of their life, people can have their needs assessed and managed, and their carers and the people important to them can also be offered support. Timely recognition gives people the opportunity to make informed decisions about their care, make plans for their future and establish their preferences for how and where they would like to be cared for and die.

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.

No routinely collected national data for these measures has been identified, therefore some examples of potential data sources have been suggested.

Structure

Evidence of local systems established to systematically identify adults who are likely to be 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 local protocols on identification of adults approaching the end of their life, including the use of tools such as the Gold Standards Framework Proactive Identification Guidance, the AMBER care bundle or the Supportive and Palliative Care Indicators Tool.

Outcome

The proportion of adults who have died with progressive life-limiting conditions who were on the palliative care register or had evidence of end of life care planning.

Numerator – the number in the denominator who were on the palliative care register or had evidence of end of life care planning.

Denominator - the number of adults who have died with progressive life-limiting conditions.

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. Quality Outcomes Framework indicator PC001 requires the contractor to establish and maintain a register of all patients in need of palliative care or support irrespective of age.

What the quality statement means for different audiences

Service providers (such as care homes, community care, mental health care, social care, primary care, secondary care and tertiary care) ensure that systems are in place and staff are trained to identify adults who are likely to be approaching the end of their life. Staff can access and use tools to support this, for example the Gold Standards Framework Proactive Identification Guidance, the AMBER care bundle or the Supportive and Palliative Care Indicators Tool.

Health and social care practitioners (such as care home staff, social workers, mental health clinicians, pharmacists, GPs, specialists and nurses) are aware of, and use, local systems to identify adults who are likely to be approaching the end of their life. They use their clinical judgement and tools to support this, for example the Gold Standards Framework Proactive Identification Guidance, the AMBER care bundle or the Supportive and Palliative Care Indicators Tool.

Commissioners (such as clinical commissioning groups, local authorities and NHS England) ensure that they commission services that use a systematic approach to identify adults who are likely to be approaching the end of their life and ensure their staff are trained to do so.

Adults who are likely to be approaching the end of their life are identified by the health and social care practitioners caring for them. This means that they can have their care and support needs assessed and start to have discussions about the care and treatment they might want in the future.

Source guidance

End of life care for adults: service delivery. NICE guideline NG142 (2019), recommendation 1.1.1

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]

Systematic approach to identifying adults who are likely to be approaching the end of their life

Adults who are approaching the end of their life can be identified using tools such as the Gold Standards Framework Proactive Identification Guidance, the AMBER care bundle or the Supportive and Palliative Care Indicators Tool. There are other ways healthcare professionals may recognise when adults are likely to be approaching the end of their life, for example, if they are moving from disease-modifying treatment to palliative care for a life-limiting health condition or through reviews for frailty with coexisting conditions.

[Adapted from NICE's guideline on end of life care for adults, recommendation 1.1.1, and expert opinion]