Advance Directives

PACIO Comments on Living Will

• Data Class: Advance Directives (Currently Level 2)
• 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 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 was recently published. Since USCDI V4 includes data elements for Treatment Intervention Preferences and Care Experience Preferences, “Priorities Upon Death” is the only information not yet captured that is necessary in a Living Will.
• Priorities Upon Death may reflect different types of concepts, but we would draw attention to disposition of the body as an example. Priorities Upon Death could include observations about a person’s wishes to donate their organs or whole body upon dying. This information is critically important in discrete form as organ procurement procedures must be performed rapidly after death. When this information exists in conjunction with other concepts that make up a living will, or as a PDF document or scanned image, it can take a great deal of time to find and honor the wishes within, which may prevent honoring them at all. Having these discrete data elements would allow faster and more complete understanding of this vital information.

PACIO Comment on Personal Advance Care Plan

Data Class: Advance Directives (Currently Level 2)

Data Element: Personal Advance Care Plan (Currently 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. We support its inclusion as a data element under the Advance Directives Data Class and support their advancement to USCDI V5. Personal Advance Care Plans have been exchanged using a published FHIR implementation guide under the title Advance Directive Interoperability.

PACIO Comments on Advance Directive

• Data Class: Advance Directives (Level 2)
• Data Element: Advance Directive (Level 2)
• Recommendation: Include both the Advance Directives Data Class and Advance Directive data element in the final version of 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 Directive 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. This is notionally different from an Advance Directive Observation, which would present a finding about the presence of an advance directive document or a status related to that document such as “code status.” This data element would capture the hundreds of thousands of advance directive forms that still exist as scanned images and PDFs. Capturing these documents would be a tremendous stepwise reduction in burden, allowing the documents to be exchanged and used in their current form and not requiring their reconstruction in a different discrete form as those capabilities are developed.

PACIO Comment on Renaming 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,” “Portable Medical Order,” 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 and that “Portable Medical Order” are established under Level 2, 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 does not 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,” “Portable Medical Order,” 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, and the FHIR STU1 IG was published in January 2024. 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)

USCDI V5 - Level 1 Feedback

Personal Advance Care Plan, Living Will, and Durable Medical Power of Attorney are Advance Directive document types.  Again, these are “A collection of advance directive observations with information to support authorization and validation of the content.”  These don’t need to be delayed to Level 1. They are already covered in the Advance Healthcare Directives Data Class.

Quality of Life Priorities are really just a collection of Patient Goals in a “prioritized order”.  I would recommend for USCDI to expand the title of the Goals and Preferences Data Category to be “Goals, Preferences, and Priorities”.  Then, simply define the notion of “Priorities” as a collection of goals or preferences in a prioritized order.

This would create a broader and more useful notion, less associated with just end-of-life priorities.  In reality there can be relevant priorities to be considered during pregnancy, birth, early childhood development, adolescent maturation, middle-life, and end-of-life.  The term “quality of life” seems overly colored with thoughts about the time of life near a pending death, or when managing a debilitated state of existence. Why not create something more general and more generally useful—Priorities?

USCDI V5 - Level -1 Feedback

Personal Advance Care Plan, Living Will, and Durable Medical Power of Attorney are Advance Directive document types.  Again, these are “A collection of advance directive observations with information to support authorization and validation of the content.”  These don’t need to be delayed to Level 1. They are already covered in the Advance Healthcare Directives Data Class.

Quality of Life Priorities are really just a collection of Patient Goals in a “prioritized order”.  I would recommend for USCDI to expand the title of the Goals and Preferences Data Category to be “Goals, Preferences, and Priorities”.  Then, simply define the notion of “Priorities” as a collection of goals or preferences in a prioritized order.

This would create a broader and more useful notion, less associated with just end-of-life priorities.  In reality there can be relevant priorities to be considered during pregnancy, birth, early childhood development, adolescent maturation, middle-life, and end-of-life.  The term “quality of life” seems overly colored with thoughts about the time of life near a pending death, or when managing a debilitated state of existence. Why not create something more general and more generally useful—Priorities?

USCDI V5 - L2 Feedback

Promote the Advance Directives Data Class and the Advance Directive Data Element into USCDI V5 to address other issues described above. The promotion should include naming changes detailed in the feedback on USCDI V5.

Advance Directives Data Class --> Advance Healthcare Directives Data Class

Advance Directive --> Advance Directive Document

Advance Directive --> Advance Directive Observation

USCDI V5 Feedback

USCDI V5 is Missing a Data Class for Advance Healthcare Directives

This data class needs to be included in USCDI V5 because of the interdependencies with the other USCDI V5 data elements Care Experience Preference, Treatment Intervention Preference, Patient Goal and Advance Directive Observation. All of these data elements which are in USCDI V5 Draft get exchanged in the context of an Advance Healthcare Directive document. It doesn’t make sense to introduce the individual data elements without the “packaging” document data element used to convey the information for exchange. USCDI V5 should move the Advance Healthcare Directives Data Class and Advance Directives data element (Level 2) to USCDI V5.

Note:  The data class called “Advance Directives” should be renamed to use the broader concept of “Advance Healthcare Directives”.  This would allow USCDI to name many “data elements” under this broad class. The data element called “Advance Directives” should be defined in the singular as “Advance Directive” but needs to be more specific such as “Advance Directive Document” or “Advance Directive Observation”. When defining a data class, it makes sense to use a plural form of the concept, and individual data elements should be specified as a singular thing.

The applicable vocabulary standards for Advance Healthcare Directive documents include 42348-3 as a general category ranging from Portable Medical Order documents (POLST/MOLST documents) to all sorts of patient authored Advance Directive documents. (See comment below regarding the hierarchy of Advance Healthcare Directive document types.) 

Being a document is a very important aspect of this data element’s nature because this data element requires “context” to be accurately understood and used and that context is provided by it being a document. Advance Healthcare Directive information also must be human readable for patient safety and risk management. The document paradigm is uniquely positioned to support these key requirements.

Additional more specific types of advance healthcare directive documents are shown in the figure below.

Personal Advance Care Plan, Living Will, and Durable Medical Power of Attorney (Level 1) documents also could be accelerated to be included in USCDI V5 because these data elements simply represent more specific types of advance directive documents. A general Data Element of “Advance Healthcare Directive Document” would suffice to represent all the document types shown in the figure above.

My recommendation would be to pull all these “data elements” into USCDI V5 because they are so tightly wrapped together, but group them as “specific document types” under a Data Element called Advance Healthcare Directive Document.  The different types of advance healthcare directive documents are just subsets of various collections of patient goals, care experience preferences, and treatment intervention preferences, along with the needed contextual data elements like witnesses, notary, authenticators, etc., and other administrative information.

One additional data element that isn’t yet included but should be considered –even if only to add it at a lower level USCDI notion—is the data element Healthcare Agent. This could be added within the Advance Healthcare Directives Data Class. If cross-referencing among Data Classes becomes possible, Healthcare Agent also could be listed as a Data Element within the Care Team Member Data Class.

Exchange of Advance Healthcare Directive Documents and the associated Advance Directive Observation information includes observations about who a patient has consented to be their healthcare agent(s). Recommend classifying durable healthcare power of attorney as a specific type of Advance Healthcare Directive Document (64298-3) and include a Data Element for  healthcare agent to describe the role a person plays as a surrogate decision-maker when appointed to speak for the patient when the patient can’t communicate for themself. 

The combined set of recommended changes would clean up the proposed Advance Directives Data Class to look like this:

Advance Healthcare Directives - The Data Class

Advance Directives Document

A collection of advance directive observations with information to support authorization and validation of the content.

Provider-authored Medical Order Form

A collection of provider-authored directives for the delivery of patient care services with information to support authorization and validation of the content.

Advance Directive Observation

A single observation made by a person or provider about an Advance Directive Document or Provider-authored Medical Order form or the care experience preferences, treatment intervention preferences, personal healthcare goals, or orders contained within an Advance Healthcare Directive document/form, or an assertion made by a provider about a patient’s advance directive status, such as DNR Status.

Cross List in Observation Class.

Provider-authored directive for the delivery of patient care services

A single order made by a provider to direct the patient’s course of care, developed to reflect and be consistent with patient’s wishes.

Cross List in Order Data Class.

Healthcare Agent

The role a person plays as a surrogate decision-maker when appointed by the patient to speak on their behalf when the patient can’t communicate for themself.

Cross List in Care Team Member Data Class.

Authenticator

A person or organization who manually, electronically, or digitally signs a document or form.

Cross list in Provenance Data Class.

Witness

A person who observes or attests to a person completing a document or form (in person or via virtual workflows).

Cross list in Provenance Data Class.

Notary

A person who follows defined “notarizing procedures” to complete a notarization process for a document or form.

Cross list in Provenance Data Class.

DNR Status

Clarifies if CPR should be performed on the patient or if CPR should not be performed.

Cross list in Health Status Assessment Data Class.

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.