The End of Life Care Co-ordination (EoLCC) National Information Standard (ISB 1580) aims to improve the co-ordination of care through better communication of people’s wishes and preferences for care at the end of life.
The standard specifies the core content to be held in Electronic Palliative Care Co-ordination Systems (EPaCCS), or paper-based care co-ordination systems. Evidence is emerging that the standard improves care co-ordination, supporting more people to die in their place of choice (What we know now 2013, PHE National End of Life Care Intelligence Network).
Some changes have been made to the standard following feedback from implementers and key stakeholders and these have recently been published by the Information Standards Board for Health and Social Care. They include:
- new data item to record consent status
- data item to record actual place of death moved to core data set
- data item to record date of death
- subset of codes now specified for the disability data item
- additional codes for the data item on informal carer, prescription of palliative care medication and formal carers involved in care
- data item for main informal carer to be mandatory for completion
- removal of non-specific codes for primary end of life care diagnosis
- removal of Liverpool Care Pathway (LCP) from the data item that records ‘End of Life Care Tools in Use’
Public Health England’s National End of Life Care Intelligence Network and NHS Improving Quality have updated the guidance documents to align with new organisational structures and resources. These are available from the National End of Life Care Intelligence Network website:
- implementation guidance
- record keeping guidance
- summary record keeping guidance
PHE Chief Knowledge Officer, Professor John Newton, said:
Having accurate, timely and relevant records about people’s preferences for care at the end of life, including information about where they would prefer to die, are key to ensuring more people achieve a ‘good’ death. End of Life Care Co-ordination Systems (EPaCCS) enable health and social care professionals to record and share information about people’s preferences and there is already evidence that they are having a positive impact.
The changes to the national information standard for end of life care co-ordination announced today will improve the quality of that information. The changes have been made in response to feedback from professionals, patients and carers and approved by the NHS Information Standards Board.
Together with NHS IQ, we will continue to monitor the standard, and implementation of EPaCCS, and will be reviewing and assessing compliance. Our overarching aim is to improve the quality of care for people at the end of their lives.
If you have any feedback or comments on implementing the standard or the supporting documentation, please contact firstname.lastname@example.org.
NHS England and Public Health England, through the Implementation and Data Set Management Group, are responsible for implementation of this standard. The group is supported by a Clinical and Professional Assurance Group and a Technical Advisory and Support Group.
NHS England, through the NHS Improving Quality Domain 2 Delivery team, is responsible for supporting the implementation and uptake of EPaCCS in England and assessing their impact.