Observations

Advance Directive as an observation?

We question whether the Observations data group is the correct location for Advance Directive data. We believe it may be more correctly grouped with patient preferences under Goals and Preferences or in its own category (with an eye toward expanding the data in the future to capture specific elements as independent structured data)

Covering Advance Directive documents across jurisdictions

The rules for advance directive documents and which documents are legal vary across different jurisdictions. For example, living wills are not enforceable documents here in Massachusetts but are in other places within the US. There is a healthcare proxy document in Massachusetts that provides the ability to designate someone else to make medical decisions for you if you are temporarily or permanently incapacitated, but that document is not legally binding elsewhere (although other states may choose to honor it and some states offer a similar option under a power of attorney program).

We are concerned that, without more explicit guidance around how to represent advance directives, decisions will be made based on common but not universally adopted types of advanced directives that exclude or make it difficult to support advance directive data or forms required in some jurisdictions but not others.

Persistent need to exchange data regarding Advance Directives

As ONC approaches the drafting of USCDI v5 there is a persistent need to be able to exchange standardized data and documents regarding Advance Directives.  While the USCDI v4 addition of Treatment Intervention Preference was a step in the right direction, and supports the exchange of "thoughts on cardiopulmonary resuscitation, mental health treatment preferences, and thoughts on pain management", it does not support the exchange of a legal Advance Directive document nor the component statements/decisions that may be contained therein.  Every USCDI taskforce and workgroup has recommended the inclusion of Advance Directive in USCDI, yet this item remains at Level 2.  Much work has been done in the industry to specify the technical requirements to support the discrete and standardized exchange of this critical clinical information, including within LOINC, C-CDA, and FHIR.  There is no question that this information should be included as a component of the CORE data for interoperability.  Adding this to USCDI v5 with the specification of appropriate vocabulary standards would set the industry on a course to be able to meaningfully access, exchange and use this critical health information.

CMS-CCSQ Support for Advance Directives for USCDI v5

CMS-CCSQ, along with the PACIO Project, continue to support the addition of the Advance Directives data class that was previously identified as a priority area by the USCDI Task Force and CMS. The PACIO Community believes the four data elements (submitted separately as Advance Directives, Durable Medical Power of Attorney, Living Will, and Personal Advance Care Plan) and Orders for End of Life Care, along with Care Experience Preferences and Treatment Preferences data elements that are currently in USCDI v4, provide the most essential information to give a holistic view of the individual’s wishes, necessary to inform care. Advance directives guide transitions and delivery of care that closely align with patient values that improve patient satisfaction. When incorporated into systems that assist healthcare professionals in decision-making, advance directives can activate customized notifications and best practice recommendations, which in turn can guide medical staff toward choices that are both well-informed and ethical. For individuals undergoing treatment from various healthcare providers or experts, the Advance Directives data class streamlines the delivery of uniform and personalized medical attention across multiple healthcare disciplines. This data class supports CMS’s objective to foster a healthcare system that is both effective and attentive to the unique healthcare preferences of each patient, thereby elevating patient well-being and satisfaction.

This information is routinely captured in patient or encounter summary documents. For the Level 1 data elements under this data class, there have been advancements in both the CDA and FHIR standards with the CDA guidance having been balloted twice within HL7 and the FHIR IGs being in later stages of ballot reconciliation with anticipated publication in the next few months. Specifically, for the Durable Medical Powers of Attorney data element, 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 Project Supports Inclusion of Advance Directives

• Data Class: Advance Directives (Level 2) 

• Data Element: Advance Directives (Level 2) 

• Recommendation: Include the Advance Directives data element in the 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 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.