Palliative and End of Life Care Standard
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.
Current release
Version: v1.1 | |||
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Release date | January 2023 | ||
Release notes | v1.1 | ||
Next release date | TBC | ||
Release type | Maintenance update | ||
The standard | |
|---|---|
Full standard – PRSB viewer | View the full standard online |
Full standard – Excel | Download file (Excel) |
Full standard – Json |  |
Supporting documentation | Description/purpose |
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Information Standards Notice (ISN) | ISNs are published to announce new or changes to information standards published under section 250 of the Health and Social Care Act 2012. |
Implementation guidance | This document includes general and section specific implementation guidance. |
Palliative and end of life care implementation toolkit | A step-by-step guide to help suppliers and organisations implement the standard. |
Business rules | Rules for implementation of the standard. |
Final report | Describes the purpose, methodolgy and stakeholder engagement for developing the standard, along with the findings and recommendations for further work. |
Appendices | Appendices of final report. |
Survey report | Details the outcomes of the national survey that was conducted as part of the consultation process. |
Safety case | Summarises the hazards which could result from implementing the standard. |
Hazard log | Details the potential hazards from implementing the standard with their risk rating and mitigation. |
Provenance data | Defines the information on who made a record entry and who carried out the activity, where and when. |
Need implementation support?
- Online support form
- Support@theprsb.org
- 020 4551 5225 (9-5 Mon-Fri, excl. bank holidays)
comformant partners
Find out more about PRSB Partners, including those partners who have reached conformance against our standards.
About this standard
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 benefits of using the standard
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.
Scope
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.
How it works
The Palliative and End of Life Care Information Standard comprises the following main sections:
Main sections of the standard | |
|---|---|
Involvement in advance care planning | Details of the person, family and carers involvement in advance care planning. |
End of life care plans | Type of end of life care plan, which contains information about the person’s wishes and preferences, ceilings of treatment, and emergency care and treatment plans. |
Cardio-pulmonary resuscitation (CPR) decision | CPR Decision includes whether a decision has been made, who made it and the date of the decision plus where any documentation can be found. |
Estimated prognosis | Details of estimated prognosis and life expectancy. |
Person is on palliative care register | Coded data. |
Anticipatory medicine | Availability and location of medicine or equipment. |
Preferred place of death | Place the person has identified as their preferred place to die. |
Palliative care financial support | Details of financial support forms/claims the clinician has informed to person about or helped to complete. |
The standard draws upon components of other PRSB standards, shown in the table below.
Content from other standards | |
|---|---|
Core Information Standard | Information based on the Core Information Standard that is routinely collected in a person’s care record including person demographics, GP practice and so forth. |
About Me Standard | Information that the person considers important to share with people caring and supporting them and including what matters to them (their needs, concerns preferences and wishes) . |
Personalised Care and Support Plan Standard | Developed with the person as a single plan to reflect their holistic needs and the goals and actions to support those needs . |
Case study
PRSB has produced a short podcast illustrating the importance of personalised care that reflects the person’s wishes and priorities.
Further resources
- Standards explained
PRSB’s guide to standards which sets out the purpose and benefits of using standards and how to support frontline professionals to adopt them.
- IHRIM record correction guidance
Despite vigilance when filing information in records, mistakes can occur. The Institute of Health Records and Information Management has guidance to support professionals in making corrections following errors.
Endorsement
- Association for Palliative Medicine of Great Britain and Ireland
- British Geriatrics Society
- Care Provider Alliance
- Compassion in Dying
- Intensive Care Society
- Resuscitation Council (UK)
- Royal College of Emergency Medicine
- Royal College of Nursing
- Royal College of Occupational Therapists
- Royal College of Physicians
- Royal College of Physicians and Surgeons of Glasgow
- Royal College of Psychiatrists
- Royal College of Radiologists
- Royal Pharmaceutical Society