Electronic Palliative Care Coordination Systems (EPaCCS) were introduced to help doctors, nurses and other professionals share important information about patients approaching the end of life. The aim is to ensure people receive care that matches their wishes, especially in urgent or out‑of‑hours situations.
Despite strong national support for these systems over many years, their use across England has been uneven, and it has not been clear whether they are making a difference.
The National Institute for Health and Care Research (NIHR)-funded study evaluated the use of EPaCCS in one NHS area in South West England. Researchers analysed data from 1,723 patient deaths, held focus groups and interviews with healthcare staff, and spoke with patients and carers about their experiences to find out what was happening and why.
The study found that the EPaCCS system had not become part of routine practice. Key problems included:
- lack of involvement from staff when the system was first introduced
- weak or inconsistent leadership to support its use
- poor compatibility with other IT systems
- unclear purpose, with many staff unsure how it should be used
- little added value, especially for clinicians who already had access to full patient records.
Many healthcare professionals felt the system duplicated existing work rather than improving care.
Why this research matters
Good communication is critical for people at the end of life. When information is not shared effectively, patients may not receive care that reflects their wishes, families may face unnecessary stress, and healthcare services may not coordinate well. This study suggests that simply introducing a digital system is not enough to improve care.
What needs to change?
The researchers identified several key factors needed to make systems like EPaCCS work:
- clear explanation of purpose so staff understand why the system matters
- shared access, allowing different professionals to update records
- better integration with existing digital systems
- stronger local ownership and leadership
- ongoing review and improvement.
These findings come at an important time, as NHS organisations expand digital records and integrated care systems across England.
Dr Lucy Pocock, a GP and NIHR Doctoral Research Fellow at the Centre for Academic Primary Care, University of Bristol who led the study, said: “Digital systems like EPaCCS have real potential to improve care at the end of life, but to work, they must be designed with the people who use them, fit into everyday practice, and clearly add value.”
Paper: Challenges in implementing an Electronic Palliative Care Coordination System (EPaCCS): Lessons learned from a realist evaluation in the South West of England by Lucy Pocock, Natahsa Bradley, Michelle Farr, Lydia French and Sarah Purdy. Published in Progress in Palliative Care.