Comment

Advance Directives Data Class - L2 Data Elements as of 9.20.2023

  • Emory Healthcare appreciates ONC’s allocation of Leading Edge Acceleration Projects in Health Information Technology (LEAP in Health IT) funding in 2023 toward Area 1, Exploring the Use of Advanced Fast Health Care Interoperability Resources (FHIR®) Capabilities, in support of a more accurate exchange of advance care planning documents.
  • As noted in our comments on draft USCDI v4, Emory Healthcare is committed to accurately documenting a patient’s wishes for their care goals and preferences in their medical record, and supports the inclusion of such documentation in USCDI. However, at this point in time, and for the purposes of clarity and accuracy, we recommend that information related to a patient’s preferences and goals related to care addressing serious illness or injury be defined as Advance Care Planning Documents. This term encompasses the breadth of related documentation that might be included in a patient’s medical record, including advance directives; living wills; powers of attorney for patient care; other designations of decision-making surrogate(s); notes containing conversations about diagnoses, prognoses, care history or experiences of loved ones that are facilitated by a health care provider; and patient-reported care preferences collected in the patient portal. Having a designated data element that encompasses all such related documentation accommodates the variability that providers and other clinical care team members encounter in the course of seeking to fulfill a patient’s wishes, and avoids unnecessary and burdensome segmentation of information.
  • Emory Healthcare emphasizes that any data elements and data classes that exchange information or documentation related to advance care planning should support quick and easy sharing of official advance care planning documents. The official names of these documents vary by state (suggesting a need for some sort of overarching and well-defined data element term), but include "advance directive for healthcare," "living will," "POA for healthcare," "health care proxy designation" and others.

PACIO Recommendation for Living Will Data Element

  • Data Class: Advance Directives (Level 1)
  • Data Element: Living Will (Level 1)
  • Recommendation: Rename the data element “Living Will” to “Priorities Upon Death” and advance it to USCDI Level 2.
  • Rationale: The PACIO (Post-Acute Care Interoperability) Project, established February 2019, 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. 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 Upon Death.” The notion of “Living Will” is better described as a bundle of data elements which identify a person’s “Treatment Intervention Preferences,” “Care Experience Preferences,” and “Priorities Upon Death”. Over the past year multiple organizations have used these terms in 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 in the later stages of ballot reconciliation and due to be published in the new few months. Since USCDI V4 includes data elements for Treatment Intervention Preferences,” “Care Experience Preferences,” “Priorities Upon Death” is the only information still needing to be captured.

PACIO Recommendation on Personal Advance Care Plan Element

  • Data Class: Advance Directives (Level 1)
  • Data Element: Personal Advance Care Plan (Level 1)
  • Recommendation: Include the Personal Advance Care Plan data element in the USCDI V5.
  • Rationale: The PACIO (Post-Acute Care Interoperability) Project, established February 2019, 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 believes the Personal Advance Care Plan data element is critical to enable the exchange of information that focuses on a narrative description and supporting documentation, in particular PDFs or scanned images.

PACIO Recommendation on Advance Directive Data Element

  • Data Class: Advance Directives (Level 2)
  • Data Element: Advance Directives (Level 2)
  • Recommendation: Include the Advance Directives data element in the USCDI V5.
  • Rationale: The PACIO (Post-Acute Care Interoperability) Project, established February 2019, 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 believes the Advance Directives data element is critical to enable the exchange of advance directive information that focuses on a narrative description and supporting documentation, in particular PDFs or scanned images.

PACIO Recommendation for Durable Medical Power of Attorney

  • Data Class: Advance Directives (Level 2)
  • Data Element: Durable Medical Power of Attorney (Level 1)
  • Recommendation: Include the “Advance Directives” data class in USCDI V5 and change the name of the data element “Durable Medical Power of Attorney” to “Healthcare Agent” and include it in the USCDI V5 under the Advance Directives data class.
  • Rationale: The PACIO (Post-Acute Care Interoperability) Project, established February 2019, 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 believes the data elements “Care Experience Preferences, Treatment Preferences,” “End of Life Orders,” and “Durable Medical Power of Attorney” included together provide the most essential information to give a holistic view of the individual’s wishes, necessary to inform care. The PACIO Community appreciates that the “Care Experience Preferences” and “Treatment Intervention Preferences” data elements have been included as data elements in USCDI V4, but to maximize the clinical utility of this information we recommend also advancing “Durable Medical Power of Attorney” as a data element in V5. Specifically, “Durable Medical Power of Attorney” enables the communication of the designated Healthcare Agent or proxy. Many individuals will designate someone to speak for them when they’re unable to communicate for themselves. If an individual doesn’t have a complete Advance Directive or Advance Care Plan, their designee can communicate their goals preferences and priorities to the care team on their behalf. Additionally, we believe the concept of “Durable Medical Power of Attorney,” would best fit within the Advance Directive data class (and not, for example in the “Care Team” data class) because: 1.) Durable Medical Power of Attorney designates a unique legal status not applicable to any other members of the care team; and 2.) as stated above, the data elements “Care Experience Preferences,” “Treatment Intervention Preferences,” “End of Life Orders,” and “Durable Medical Power of Attorney” included together provide the most essential information to give a holistic view of the individual’s wishes, necessary to inform care.

Although our priority would be to include information capturing the concept of “Durable Medical Power of Attorney” in USCDI V5, we recommend renaming this data element “Healthcare Agent.” The PACIO community believes the notion of “Healthcare Agent” is better described as a collection of data elements, which may establish one or more “Durable Medical Powers of Attorney,” but is part of a set of data elements that may include additional details about the specific powers or limitations associated with that established role. With this context in mind, the data element “Healthcare Agent” is a broader term to encompass the content that could be exchanged, a subset of which might be the designation of a “Durable Medical Power of Attorney.” 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 currently is resolving dispositions to comments from the January 2022 ballot. There are LOINC Codes that represent this data element and it is part of both CDA and FHIR IGs. (81335-2 Patient Healthcare agent) Also, there is a well-established value set for representing a primary, secondary, or tertiary healthcare agent when multiple agents are established. (Healthcare Agent or Proxy Choices, urn:oid: 2.16.840.1.113762.1.4.1046.35)

PACIO Comments on Advance Directives in V5

  • Data Class: Advance Directives (Level 2)
  • Data Element: Advance Directive Observation (Level 2)
  • Recommendation: Include the “Advance Directives” data class and the “Advance Directive Observation” data element under this class in USCDI V5.  
  • Rationale: The PACIO (Post-Acute Care Interoperability) Project, established February 2019, 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 believes that the Advance Directive Data Class provides context to the information exchanged and strongly recommend the “Advance Directives” data class be included in USCDI V5 along with the “Advance Directive Observation” data element. The Advance Directive observation is a critical component of the advance healthcare decision-making process; it is part of the clinical workflow that enables "confirmation" that what is wanted by the person has been validated by a clinician as being authentic for that person, which begins the workflow to activate those decisions into the treatment or care plan. Whether the clinician views a document or listens to a verbal instruction from the patient is what is intended by this "observation", it is from this "confirmation" step as a result of the observation that an instruction or prohibition of a treatment is verified that orders and actions with the treatment or care plan are initiated. Without the observation component, the document's instructions cannot be acted upon.  Even a portable medical order may require a clinical observation in certain jurisdictions or organizations to initiate the process for an episode-specific order to be created, which would mirror the PMO's content(s).

PACIO Project Advance Directive Recommendation

  • Data Class: Advance Directives (Level 2) 

  • Data Element: Advance Directive Observation (Level 2) 

  • Recommendation: Include “Advance Directives” data class and the “Advance Directive Observation” data element under this class in USCDI V4.    

  • Rationale: The PACIO (Post-Acute Care Interoperability) Project, established February 2019, 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 believes that the Advance Directive Data Class provides context to the information exchanged and strongly recommend the “Advance Directives” data class be included in USCDI V4 along with the “Advance Directive Observation” data element. The Advance Directive observation is a critical component of the advance healthcare decision-making process; it is part of the clinical workflow that enables "confirmation" that what is wanted by the person has been validated by a clinician as being authentic for that person, which begins the workflow to activate those decisions into the treatment or care plan. Whether the clinician views a document or listens to a verbal instruction from the patient is what is intended by this "observation", it is from this "confirmation" step as a result of the observation that an instruction or prohibition of a treatment is verified that orders and actions with the treatment or care plan are initiated. Without the observation component, the document's instructions cannot be acted upon.  Even a portable medical order may require a clinical observation in certain jurisdictions or organizations to initiate the process for an episode-specific order to be created, which would mirror the PMO's content(s). 

Support to Advance "Advance Directives"

PACIO recommends promoting the “Advance Directive” Data Class to USCDI Level 2.

Although the new PACIO Advance Directives Interoperability FHIR IG won’t publish until late 2022, considerable progress has been made on implementer consensus about how to represent and exchange advance directive information. The additional maturity should be recognized in an upgrade from Level 1 to Level 2.

Following ballot reconciliation and publication of the FHIR IG, The Advance Directive Data Class should be added to USCDI ONDEC submission for V4 in 2022.

CMS-CCSQ Continued Support for Advanced Directives: USCDI v4

CMS continues to support the advancement of the Advanced Directives data class, previously identified as a priority area by the USCDI Task Force and CMS. This complements the end-of-life care orders recommendation to ensure all patients receive appropriate and respectful care. Advanced directives guide transitions and delivery of care that closely align with patient values that improves patient satisfaction. This information is routinely captured in patient or encounter summary documents. Information about patient-document goals and preferences is important for clinical decision support and care coordination.

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