Advance Directives and Code Status Information Exchange: A Consensus Proposal for a Minimum Set of Attributes

Area of Science:

• Medical Informatics
• Health Information Systems
• Bioethics

Background:

• Advance directives and code status documentation are crucial for end-of-life (EOL) care quality but are underutilized.
• Current electronic health record (EHR) systems often lack standardized methods for storing and exchanging EOL care wishes.
• Low adoption rates hinder effective communication of patient preferences, impacting care quality and patient satisfaction.

Purpose of the Study:

• To propose a minimum data set for documenting and exchanging patient code status and advance directive information within EHR systems.
• To facilitate consistent and accessible communication of EOL care wishes across healthcare providers and settings.
• To establish a foundation for developing standardized EHR functionalities for advance care planning.

Main Methods:

• An environmental scan identified existing resources related to EOL care documentation.
• Consensus was reached on a minimum data set through conference calls and collaborative document review by the American Medical Informatics Association's Ethics Committee.
• The proposed data set was designed with links to the HL7 C_CDA Advance Directives Module.

Main Results:

• A minimum required data set for code status information was developed.
• The data set includes categories for the organization, patient, supporting documentation, and desired code status (mandatory, optional, conditional elements).
• This standardized approach enables better communication of patient wishes across different healthcare providers and settings.

Conclusions:

• The proposed minimum data set facilitates the electronic exchange of critical EOL care information.
• Standardization of code status data within EHRs can improve patient-centered care and align care with patient and family desires.
• This work serves as a starting point for dialogue among informatics professionals, clinicians, and vendors to implement robust EHR solutions for advance directives.