Do Electronic Palliative Care Coordination Systems (EPaCCS) increase the chances of a good death?

Problem

Continuity of care is particularly important for patients at the end of life and a lack of information sharing is often cited as a barrier to the provision of good quality end of life care.

Nationally, the policy drive to address this has been the development of electronic palliative care coordination systems (EPaCCS). The purpose of EPaCCS are to provide a shared local record for health and social care professionals, with key information about an individual approaching the end-of-life, including their expressed preferences for care.

Quantitative studies have shown striking differences in place of death with EPaCCS, but are potentially biased and confounded. Poor uptake among primary care staff has been cited as a barrier to success.

Little research has been undertaken to understand how, and by whom, EPaCCS are being used and whether EPaCCS support patients’ end of life wishes. Rigorous evaluation and research is needed to fully understand the benefits and harms of EPaCCS, with greater insight into patient and families’ experiences.

Aims

1. Describe the characteristics of patients who die with an EPaCCS record, compared to patients who die without.

2. Explore the impact of an EPaCCS on the experience of providing, or receiving, end-of-life care for healthcare professionals, patients and carers.

Approach

This is a mixed-methods study, carried out within a realist paradigm, to evaluate the impact of an EPaCCS on end of life care as provided by a Clinical Commissioning Group (CCG) in England.

The study was conducted in five phases:

1. Development of the initial programme theory.

2. Focus group with CCG stakeholder board.

3. Individual interviews with healthcare professionals, patients, current and bereaved carers.

4. Retrospective cohort study of routinely collected data on EPaCCS usage.

5. Data analysis and synthesis of study findings.

Findings

Data collection and analysis are still ongoing, but early findings are as follows:

Only primary care staff can update the EPaCCS, which is frustrating for other healthcare professionals and results in additional workload for primary care.

Patients think the EPaCCS concept is worthwhile, but they aren’t aware of whether they have an EPaCCS record.

It is assumed that information sharing prevents repeated conversations with patients. Our results suggest that it may stop conversations completely and that patients would rather have repeated conversations than no conversation.

Consequences

Healthcare professional access remains a fundamental problem and is a barrier to EPaCCS success.

Patient awareness and involvement requires further exploration, including access to their own EPaCCS record.