Palliative and End of Life Care Standard

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).

On this page

 

Current release

Version: v1.11
> Standard model – Json
> Standard model – Excel
> Standard model – PRSB viewer
> Supporting documentation (external link to NHS Standards Directory)
> Implementation toolkit

From 01 January 2026, this standard will be owned and managed by NHS England and is made available for reuse or amendment under the Open Government Licence v3.0 (OGL 3.0). A review of the ongoing requirement for this standard will be undertaken by NHS England. Details on this and any update to the standard will be published on the NHS Standards Directory. If you have any questions or feedback relating to this standard, please email: england.standards.assurance@nhs.net.

 

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.

Summary table

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.

Roberta podcast

CHAT theory also explicitly addresses five areas which if addressed systematically will help overcome stakeholder differences in pursuit of the common goal:

1. Understanding the artefacts that characterise the group and its activity.
• The artefacts might be clinical settings or the forms and templates used to capture and share information. During the pilot we heard about hard copy Dialog response forms; locally generated templates for collating information from different systems; letters and emails to GPs; images, poems or other non-text artefacts that service users might want to include in their ‘about me’ or care plan.

2. Understanding the multi-views of the group. Such groups are always a community of multiple points of view, traditions and interests. 
• Different participants in the group will have different roles and will bring to the group and their roles their own histories, language, and ‘rules’. During our Stocktake preparations and workshops we worked with psychiatrists, mental health nurses, occupational therapists, social workers, transformation leads and voluntary sector representatives, all professions and interests with their own language, approaches professional ‘rules’ but united in their interest in care plans, care planning.

3. Activity systems (like the ICSs) take shape and get transformed over periods of time. ‘Historicity’ is a term coined to express how the group’s problems and potentials can only be understood against their own history. 

 

• ‘We’ve always done it this way’, ‘that didn’t work before’, ‘it’s always like this’, ‘it wasn’t always like this’, ‘they are changing things again’, are all typical statements that often frustrate those charged with overseeing change initiatives. Without addressing the experiences that lie behind such comments you risk repeating mistakes of the past, alienating your stakeholders or just not understanding the real starting point for your transformation project. This is particularly the case for the implementation of the PCSP standard, the success of which will be largely reliant on point-of-care practices and information protocols as well as having systems which are user friendly and appropriately configured.

4. The central role of contradictions as sources of change and development. Contradictions are not the same as problems or conflicts. Contradictions are historically accumulating structural tensions within and between activity systems. Collectively addressing contradictions in how policy, practice, culture and technology interact will empower teams to find genuinely novel solutions for apparently intractable challenges, like interoperability and shared care plan/planning. 

This links to the fifth principle that:

5. the possibility of expansive transformations in activity systems. As the contradictions of an activity system are aggravated, some individual participants begin to question and deviate from its established norms. In some cases, this escalates into collaborative envisioning and a deliberate collective change effort. “An expansive transformation is accomplished when the object and motive of the activity are re-conceptualised to embrace a radically wider horizon of possibilities than in the previous mode of the activity.”