Electronic palliative care coordination systems: Devising and testing a methodology for evaluating documentation

Area of Science:

• Healthcare Informatics
• Palliative Care Research
• Health Services Evaluation

Background:

• Electronic palliative care coordination systems (EPCCS) are increasingly implemented globally to enhance end-of-life care coordination.
• A significant gap exists in methodologies for evaluating the practical application and effectiveness of these EPCCS.

Purpose of the Study:

• To develop and apply an evaluation framework for assessing the documentation of advance care planning within end-of-life care services using EPCCS.
• To examine the extent and timing of electronic documentation related to key end-of-life care decisions.

Main Methods:

• A pragmatic, formative process evaluation was conducted using the Project Review and Objective Evaluation methodology.
• Data were extracted from EPCCS across 82 general practices, including 1229 deaths recorded between April 2014 and March 2015.

Main Results:

• Only 26.8% of all deaths were recorded in the EPCCS.
• Key information was recorded at a median of 31 days before death for record initiation, 8 days for preferred place of death, and 34 days for Do Not Attempt Cardiopulmonary Resuscitation decisions.
• Discrepancies were noted in data entry coding, though preferred and actual place of death matched for 75% of patients.

Conclusions:

• This study presents the first methodology for evaluating EPCCS documentation in end-of-life care.
• The findings raise critical questions regarding the utility of routine data collected by EPCCS and suggest areas for improvement in data quality and evaluation approaches.
• Future evaluations should incorporate the work processes of healthcare professionals utilizing these systems.