Data Element

Information from the submission form

Personal Advance Care Plan
Advance care plan is a general term for any documentation or other recordation of a person’s medical treatment goals, preferences, and priorities for some future point in time, under certain circumstances when the individual cannot make medical treatment decisions or communicate his or her goals, preferences, and priorities with the care team. An advance care plan places an emphasis on communication, as opposed to legal formalities. A PACP is a term specifically defined by HL7 as a template to facilitate the sharing of information expressed in advance care plans. A PACP may include the type of information contained in a living will and/or a durable medical power of attorney, and it also may include other medical interventions experience preference and instructions that help a healthcare agent make treatment decisions on the person’s behalf, and can be used by medical professionals to inform their medical interventions and treatment planning for the patient. Within the family of documents that have been defined under Consolidated CDA, the PACP document can be classified as a type of patient-generated document. The PACP document facilitates digital exchange of information previously and currently captured and shared using paper documents. Digital exchange of this type of data has become particularly critical within the context of COVID-19. To reduce the spread of disease, hospitals have disallowed patient family members and/or representatives to be present when the patient is admitted and as medical interventions are rendered, while also prohibiting acceptance of paper documents due to concerns of contagion. A PACP may include information relating to the appointment of a healthcare agent and alternate agents and establishing their authorized powers and limitations. It also may include information relating to any or all of the following: goals, preferences, and priorities for medical interventions (e.g., palliative and/or hospice care), including medical treatment preferences, based on the patient’s individual values, spiritual and religious beliefs, and personal definitions of quality of life; instructions to be followed after death (e.g., organ donation and autopsy); and information about who has signed, witnessed, and notarized the information authored by the individual, if available and appropriate. The set of recognized kinds of advance directive documents include concepts from the value set: Advance Directives Categories urn:oid:2.16.840.1.113883. which is openly available for reference in the National Library of Medicine’s Value Set Authority Center. It can be referenced using this url:


PACIO support to remove “Personal Advance Care Plan”

The PACIO Project agrees with the recommendation to remove the data element titled “Personal Advance Care Plan”. PACIO supports the advancement of the data elements composing this bundle instead: “Healthcare Agent” “Priorities Under Certain Conditions”, “Priorities Upon Death”, “Quality of Life Priorities”, and “Care Experience Preferences”. 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.

Remove “Personal Advance Care Plan” as a data element

While the concept of “Personal Advance Care Plan” remains important to be included in the USCDI, further community discussion led to clarification of the request of this item. The “Personal Advance Care Plan” concept is better described as a bundle of information which includes the data elements of “Healthcare Agent”, “Priorities Under Certain Conditions”, “Priorities Upon Death”, “Quality of Life Priorities” and “Care Experience Preferences”.  The recommendation to advance the data elements that are part of the bundled Personal Advance Care Plan items are identified and justified in each specified data element.

USCDIv3 ADI_Comments_20210927v3_4.pdf

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