Palliative and End of Life Care Standard

The needs of people of all ages who are at or near the end of life should be addressed, taking into account their priorities, preferences and wishes. This personalised care will result in a better experience, tailored around what really matters to the person, and create more sustainable NHS services.

The Palliative and End of Life Care Standard will ensure that professionals and individuals have access to appropriate information to support decision-making for those with palliative care needs. The standard also supports the Universal Principles for Advance Care Planning.

Current release

Version: V2.1
Release date
January 2023
Release notes
V1.1
Next release date
Feb/March 2027
Release type
Scheduled release
The standard
Full standard – PRSB viewer
View the full standard online
Full standard – Excel
Download file (Excel)
Full standard – Json
Available with next release
Minimum Viable Information Standard (MVIS)
MVIS sets out the data items and business rules that must be implemented to achieve safe, minimum implementation . Read more >
Supporting documentation
Description/purpose
Information Standards Notice (ISN)
(Due for publication June 2024)
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 implementation guidance for all PRSB standards and detailed guidance, specific to the eDischarge Summary Standard.
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.
Male And Female Nurse Working At Nurses Station

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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 .

Examples

To give a clearer idea of how the standard works in practice, PRSB have created some scenario examples.

palliative image - woman in bed being cared for by nurse

Further resources

  • Minimum viability information standard (MVIS)
    PRSB information standards define best practice based on evidence and widescale consultation and input from users and stakeholders. PRSB recognises that the NHS and social care are on a journey towards standardisation and interoperability and our aim is to support and encourage implementers on that journey. For this reason, we have defined and clinically validated a ‘Minimum Viable Information Standard (MVIS)’ for each of our standards which represent the minimum safe instance of the standard and delivers the intended objectives within the spirit of the standard. The MVIS defines the data items and business rules which must be implemented in order to have achieved this minimum instance. It is our aim that implementers will continue to improve their implementation of the standard over time and strive for a ‘best practice’ implementation, supported and evidenced by PRSB conformance testing. Please contact our support team to receive a copy of the MVIS for this standard.
  • 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