Data Element

Information from the submission form

Living Will
In a living will, a person specifies whether he or she wants (or does not want) “life-sustaining treatments” (e.g., artificial nutrition or hydration, dialysis or the use of a ventilator to help with breathing), external cardiac compression (CPR), the application of an electric current to the heart (defibrillation), or the use of a tube placed into the windpipe through the mouth or nose to help the person breathe, should that person suffer a medical emergency and be unable to communicate with the care team. A living will includes information that helps the healthcare agent make treatment decisions on the person’s behalf, and is used by medical professionals to inform their treatment plans.


PACIO support for modifications & advancement to USCDI Level 2

The PACIO Project strongly supports modifying the "Living Will” data element to become two data elements: “Priorities Under Certain Conditions” and “Priorities Upon Death”. PACIO also strongly recommends the advancement of those two data elements to USCDI Level 2. Established February 2019, the PACIO Project is a collaborative effort between industry, government, and other stakeholders, with the goal of establishing a framework for the development of FHIR implementation guides to facilitate health information exchange. The PACIO community is open to all interested parties and currently includes over 50 individuals and organizations. On behalf of the PACIO Project leadership team, the PACIO Community voted 9/29/21 and unanimously supports the document and recommendations as posted 9/28/21 by Lisa R Nelson. PACIO members were involved in the creation of that document based on experiences in advance directive content adjudication and FHIR implementation guide development.  

Modify to be two separate data elements & move to USCDI Level 2

While the concept of “Living Will” remains important to be included in the USCDI, further community discussion led to modifying the data element from “Living Will” to “Priorities Under Certain Conditions” and “Priorities Upon Death”.  The notion of “Living Will” is better described as a bundle of data elements which identify a person’s “Priorities Under Certain Conditions” or “Priorities Upon Death”.  Over the past year multiple organizations have used both CDA and FHIR standards to share this important patient generated information.  In addition, the CDA guidance has been balloted twice within HL7, the FHIR IG is preparing to be balloted in January 2022.
  • There are LOINC Codes that represents these data elements (81336-0 Patient Goals, preferences, and priorities under certain health conditions and 81337-8 Patient Goals, preferences, and priorities upon death) and instructions for using both are included in the CDA and FHIR IGs.
  • Value sets for common treatments a patient may prefer to receive or not receive under certain conditions as well as priorities upon death are defined and available for use in the NLM VSAC.  (Intervention Preferences at End of Life, urn:oid:2.16.840.1.113762.1.4.1115.9 and Health Goals at End of Life Grouping, urn:oid:2.16.840.1.113762.1.4.1115.7)
We strongly recommend the “Living Will” data element be modified to be “Priorities Under Certain Conditions” and “Priorities Upon Death” data elements and then move to USCDI Level 2.

USCDIv3 ADI_Comments_20210927v3_3.pdf

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