People at or near the end of life should receive personalised care that reflects their wishes and priorities, improving their experience and supporting sustainable NHS services. The Palliative and End of Life Care Standard ensures professionals and individuals have the right information to support decision making and aligns with the Universal Principles for Advance Care Planning.

This standard should be used to support the standardised recording of information related to palliative care and end of life forming the core content of information to be held in electronic palliative care co-ordination systems (EPaCCS).

This information may already be recorded in clinical systems using legacy coding that does not conform to the coding requirements set out in the standard. The coding requirements in the standard apply to new data entry.

The standard does not address the issues of migrating legacy data and clinical concepts to conform with the coding requirements set out in the standard. Implementers of the standard will need to be mindful of pre-existing data.

People with a palliative or life-limiting illness at any age want their health and care team to know and respect their care needs and wishes. People also want everyone involved in their care, including family and carers, to have access to information to help them achieve the treatment and care that’s right for them at the end of life. The standard has been developed to ensure key information is collected and shared in a way that:

• Keeps the patient at the centre of decision-making
• Ensures the care team has access to appropriate information to support decision-making
• Promotes the sharing of information held in records in different systems
• Is standardised across health and care (so it is easy to share across organisational and geographical boundaries)
• A person’s palliative and end of life care plan should be designed to be reviewed and updated as their condition changes in line with their wishes and preferences, as discussed with professionals and carers in line with the Universal Principles for advance care planning.

A person’s palliative and end of life care plan should ideally form part of their personalised care plan so that clinicians have a holistic view of the individual, the conditions for which they are being treated, and their needs and preferences as they near the end of their life. If someone doesn’t already have a generalised care plan recorded electronically, you can still create an end of life plan for them.

The standard will help health and care professionals access information quickly, knowing it can be trusted as a single source of truth, when making key decisions about a person’s care.

When adopted, the standard also ensures that a person’s wishes and needs, as they near the end of life, can be easily shared wherever they are and with whoever is providing their care.

The standard is UK wide for use across the whole of health and social care and for anyone requiring palliative and end of life care, including children.

The Professional Records Standards Body has produced a short podcast illustrating the importance of personalised care that reflects the person’s wishes and priorities. Listen to Roberta's story