Quality statement 1: Identification
Measures from End of life care strategy: quality markers and measures for end of life care (Department of Health 2009).
See also quality measures and national indicators for further information.
a) Evidence of local systems in place to document identification of people approaching the end of life.
b) Evidence of local retrospective audits of how soon (such as by days, weeks, months or years) people were identified as approaching the end of life before death.
A proportion of deaths will be unexpected and therefore unlikely to be identified in time to be included on a register or equivalent system. Some people may not wish to be identified and/or may not consent to being included on a register or equivalent system.
a) People approaching the end of life, and their families and carers, are aware of the aims of care.
b) People approaching the end of life, and their families and carers, feel that early identification of their need for end of life care helped with meeting their specific needs and preferences in a timely and meaningful way.
See the overview for overarching outcomes.
Service providers ensure that systems are in place to identify people approaching the end of life in a timely way.
Health and social care professionals act to identify people approaching the end of life in a timely way.
Commissioners ensure they commission services that identify people approaching the end of life in a timely way and have the capability to record identification.
People approaching the end of their life are identified at the right time to receive care and support to meet their needs and preferences.
Department of Health quality markers and measures for end of life care top ten quality marker for providers 2; and markers and measures 1.8, 1.13, 1.17, 3.3, 3.7 and 8.2.
a) Quality and Outcomes Framework (QOF) indicator PC 3 (primary care only) – the practice has a complete register available of all patients in need of palliative care/support irrespective of age. The draft End of life care locality register pilot programme core dataset from the Information Standards Board records patients in any setting who have been entered onto an end of life care locality register. The draft comprehensive dataset also records the date added to GP Gold Standards Framework register.
b) Local data collection. The National End of Life Care Intelligence Network published a report on Predicting death: estimating the proportion of deaths that are 'unexpected' based on Office for National Statistics (ONS) mortality data, which may be useful in estimating the proportion of people who might be identified as approaching the end of life.
Outcome: a) Local data collection. Office for National Statistics (ONS) National bereavement survey (VOICES) includes a question on whether the person who died knew that they were likely to die.
b) Local data collection.
Identification of people approaching the end of life may be initiated by either health or social care professionals in any setting. Although professionals should discuss with the person and their families and carers the benefits of being identified and the use of a register or equivalent system, the process of identification should be sensitive to the possibility that not all people will want to be identified and/or placed on a register.
In Treatment and care towards the end of life: good practice in decision making, the General Medical Council defines approaching the end of life as when a person is likely to die within the next 12 months. This timeframe provides a guide as to when people might be identified as approaching the end of life. For some conditions, the trajectory may require identification and subsequent planning to happen earlier. For other conditions, it may not be possible to identify people until nearer the time of death. Identification should take place with sufficient time to enable provision of high-quality end of life planning, care and support in accordance with the person's needs and preferences. Identification will need to be considered on an individual basis.
Examples of available tools for assisting clinicians with timely identification of people approaching the end of life, include:
See also supporting information on QOF Palliative Care (PC) indicator 3, which includes examples of identification criteria.
Information on a pilot programme for the use of locality registers for end of life care is available from the End of life locality registers evaluation, supported by the Department of Health and National End of Life Care Programme. End of life care locality registers are also known as electronic palliative care coordination systems.