Advance directives and code status information exchange: A consensus proposal for a minimum set of attributes

Christoph U. Lehmann, Carolyn Petersen, Haresh Bhatia, Eta S. Berner, Kenneth W. Goodman

Research output: Contribution to journalReview article

Abstract

Documentation of code status and advance directives for end-of-life (EOL) care improves care and quality of life, decreases cost of care, and increases the likelihood of an experience desired by the patient and his/her family. However, the use of advance directives and code status remains low and only a few organizations maintain code status in electronic form. Members of the American Medical Informatics Association's Ethics Committee identified a need for a patient's EOL care wishes to be documented correctly and communicated easily through the electronic health record (EHR) using a minimum data set for the storage and exchange of code status information. After conducting an environmental scan that produced multiple resources, Ethics Committee members used multiple conference calls and a shared document to arrive at consensus on the proposed minimum data set. Ethics Committee members developed a minimum required data set with links to the HL7 C-CDA Advance Directives Module. Data categories include information on the organization obtaining the code status information, the patient, any supporting documentation, and finally the desired code status information including mandatory, optional, and conditional elements. The minimum set of attributes to exchange advance directive/code status data described in this manuscript enables communication of patient wishes across multiple providers and health care settings. The data elements described serve as a starting point for a dialog among informatics professionals, physicians experienced in EOL care, and EHR vendors, with the goal of developing standards for incorporating this functionality into the EHR systems.

Original languageEnglish (US)
Pages (from-to)178-185
Number of pages8
JournalCambridge Quarterly of Healthcare Ethics
Volume28
Issue number1
DOIs
StatePublished - Jan 1 2019

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ASJC Scopus subject areas

  • Issues, ethics and legal aspects
  • Health(social science)
  • Health Policy

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