Palliative Care Co-ordination: Core Content

Palliative and end of life care is often delivered by a range of professional groups across care settings and sectors including out-of-hours doctors and ambulance services.

Approaches to communication between providers of such care vary and typically depend on local service and system configuration. EPaCCS offer an approach to manage the sharing of palliative care information (with the person’s consent) with professionals caring for the individual and so help providers better manage communication and coordination of patient care.

The core content includes care decisions and preferences and the standard supports accurate and consistent recording of this information. It is the aim that timely access to reliable and up-to-date information through EPaCCS will support people to die in the place of their choosing and with their preferred care package.

About this change

This amendment comprises:

1. Change of title of the information standard

The name has been changed to improve clarity that EPaCCS records are to be used for people who receive palliative care and not just for those in the last weeks/days of life. The name change also aligns with EPaCCS and the proposed Palliative Care Clinical Data Set.

2. Coding updates

Updating the Requirements Specification with the new codes which were not available at the time of publication of the previous release (Amd 16/2013):

• disability
• functional status
• is main carer aware of person’s prognosis? 

3. New data items to record:

• NHS number status indicator code
• the likely prognosis
• awareness of cardiopulmonary resuscitation decision. 

4. Amendment to current data items

• change of terminology for MAIN INFORMAL and FORMAL CARERS to MAIN CARER and CARE WORKER
• the term DNACPR DECISION has been replaced with CARDIOPULMONARY RESUSCITATION DECISION. This applies to the data items: DNACPR DECISION MADE, DATE OF DNACPR DECISION, DATE FOR REVIEW OF DNACPR DECISION and LOCATION OF DNACPR DOCUMENTATION
• the term NOT AWARE OF DO NOT ATTEMPT CARDIOPULMONARY RESUSCITATION CLINICAL DECISION has been moved from DNACPR DECISION MADE to the new data item AWARENESS OF CARDIOPULMONARY RESUSCITATION DECISION together with a new note to improve clarity of the term
• amended categories for PREFERRED PLACE OF DEATH and ACTUAL PLACE OF DEATH
• the summary table of data items has been aligned with the headings recommended in the Standards for the clinical structure and content of patient records published by Academy of Medical Royal Colleges (AoMRC), July 2013
• data entry status for data item: NHS NUMBER has been changed from required to mandatory
• removal of the value, ON INTEGRATED CARE PATHWAY, from the data item: EOLC TOOL IN USE
• NHS Data Model and Dictionary terminology has been updated for gender. PERSON GENDER CODE CURRENT has been replaced with PERSON STATED GENDER
• a note has been added to inform of the timescales for withdrawal of maintenance for Read terminology
• the definitions for KEY WORKER and CARER have been changed to align with new NHS Data Model and Dictionary definitions.

5. Correction

Correction of minor printing error for data item recording functional status.

6. Updating of guidance documents and other changes

• minor changes have been made to the guidance on consent that is provided in the Palliative care co-ordination Implementation and Record keeping guidance
• a new recommendation has been made that EPaCCS systems should include reporting functionality
• risks and issues have been added to the Palliative care co-ordination Implementation guidance
• the ordering and numbering of the data items has been changed
• the glossary has been updated.