Data Element

Information from the submission form
Orders for End of Life Care
Description
End of Life Care, which includes palliative care, comfort care, and hospice, encompasses the support and medical care provided during the period near death. An Order or a Service Request for End of Life Care represents a request for this intervention for a patient. This concept may be used to share relevant information required to support a transfer of care request from one practitioner or organization to another that provides end of life care services.
Submitted By: Grace Glennon on behalf of Joel Andress and CMS-CCSQ / On behalf of Centers for Medicare and Medicaid Services (CMS) Center for Clinical Standards and Quality (CCSQ)
Data Element Information
Rationale for Separate Consideration A data element encompassing orders for all services (Types of orders for medical care/services ) is a Level 2 element, but we believe a data element specifically for end of life care orders should be included, due to the high priority nature of these specific orders, and the USCDI taskforce recommendation to prioritize the concept. Additionally, the COVID-19 pandemic has renewed the push for an expansion of end of life care services with thousands of Americans suffering from long-term, debilitating symptoms. End of life care, like palliative care, has also been associated with a higher quality of life and better pain management in patients who have received these services.

https://www.healthit.gov/sites/default/files/facas/2021-04-15_USCDI_Task_Force_Recommendations_508.pdf
https://www.pewtrusts.org/en/research-and-analysis/blogs/stateline/2021/04/20/long-haul-covid-renews-push-to-expand-palliative-care
https://www.who.int/news-room/fact-sheets/detail/palliative-care
Use Case Description(s)
Use Case Description Orders (service requests) for end of life care services are used extensively by hospitals, clinicians and providers, and are included in CMS quality measurement. They are important for quality improvement, clinical decision support, and measurement to ensure proper patient populations are provided the proper end of life care as needed. These data are necessary to confirm appropriate and high quality of care is received for patients across different populations. It is clinically relevant from a care perspective and a quality measurement perspective.

Currently, CMS quality eCQMs include the order concepts for end of life care services, including hospice, comfort care, palliative care.
Estimated number of stakeholders capturing, accessing using or exchanging More than 4,000 hospitals and 1 million providers currently capture, access and exchange this order (service request) information. This information is currently electronically submitted by providers and hospitals to CMS for quality measurement.
Link to use case project page https://ecqi.healthit.gov/ecqms :eCQI resource center, includes measure specifications for CMS program eCQMs (i.e. CMS 69, CMS 347, CMS 506, CMS 159)
Use Case Description Each step in the chain of events between a clinicians request for an end of life care service (order) and the completion of that service is critical for vigilance and surveillance of patient safety and appropriate care. It is important to have the capacity to evaluate the clinicians intent and the actual completion across care settings and across time. Specifically, this concept supports care coordination by allowing for transfer of information of the order to be completed if the service is not being provided by the same organization.
Estimated number of stakeholders capturing, accessing using or exchanging All healthcare providers and hospitals using EHR systems should have order information for end of life care services documented and accessible.
Link to use case project page https://ecqi.healthit.gov/ecqms
Healthcare Aims
  • Improving patient experience of care (quality and/or satisfaction)
  • Improving the health of populations
  • Reducing the cost of care
  • Improving provider experience of care
Maturity of Use and Technical Specifications for Data Element
Applicable Standard(s) SNOMED CT
ICD-10
CPT

Examples:
Comfort Measures SNOMED CT Value set: 1.3.6.1.4.1.33895.1.3.0.45
Hospice Care Ambulatory Value set: 2.16.840.1.113883.3.526.3.1584
ICD-10 Encounter for palliative care: Z51.5
HL7 Service Type value set: https://www.hl7.org/fhir/valueset-service-type.html
https://vsac.nlm.nih.gov/valueset/expansions?pr=ecqm
Additional Specifications HL7 FHIR QI Core Implementation Guide STU4 based on FHIR R4, Service Request Profile: http://hl7.org/fhir/us/qicore/StructureDefinition-qicore-servicerequest.html

US CORE Implementation Guide: Service Request noted as a future profile under consideration: https://www.hl7.org/fhir/us/core/future-of-us-core.html

HL7 FHIR ValueSet Service Type: Includes hospice care, palliative medicine (https://www.hl7.org/fhir/valueset-service-type.html)

HL7 FHIR Quality Measure STU2 for FHIR R4 Implementation Guide, Library-Hospice (http://hl7.org/fhir/us/cqfmeasures/Library-Hospice.html)
Current Use Extensively used in production environments
Supporting Artifacts Orders (service requests) for end of life care services are routinely captured in EHR systems used by hospitals and providers for the use in CMS quality reporting eCQMs across programs including IQR, QPP, and Promoting Interoperability programs. CMS requires the submission of order (service request) related data for quality measurement for eligible hospitals/CAHs and clinicians using ONC Certified Health Electronic Record Technology (CEHRT)—this includes orders (service requests) for an intervention (i.e. palliative care, hospice, comfort care).
https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/MMS/Quality-Programs ; https://ecqi.healthit.gov/ecqms
Number of organizations/individuals with which this data element has been electronically exchanged 5 or more. This data element has been tested at scale between multiple different production environments to support the majority of anticipated stakeholders.
Supporting Artifacts End of life care orders (service requests) data for quality measurement is electronically exchanged from organization’s EHR systems to CMS for reporting and payment quality measurement programs, via QRDA files and other architectures. These orders (service requests) data elements have been tested for reliability and validity of capture during the development of CMS eCQMs and can be feasibly exchanged. Ongoing testing for exchanging these data in FHIR standards via HL7 Connectathons.
https://ecqi.healthit.gov/qrda; https://confluence.hl7.org/display/FHIR/2021-09+Clinical+Reasoning
Potential Challenges
Restrictions on Standardization (e.g. proprietary code) No challenges anticipated. These data are available in standard terminology that can be publicly access via the VSAC and HL7.
Restrictions on Use (e.g. licensing, user fees) We are not aware of any restrictions.
Privacy and Security Concerns These data, like any patient data should be exchanged securely. Current processes exist, governed by CMS and ONC, to securely transfer this data element.
Estimate of Overall Burden Orders (Service requests) for end of life care are regularly captured by a broad range of healthcare providers, and should not cause burden to implement. Some burden required to include a ServiceRequest profile as a US Core profile, though it is already noted as a potential addition for future iterations, and built out in QI Core.
Other Implementation Challenges N/A
ONC Evaluation Details
Each submitted Data Element has been evaluated based on the following 4 criteria. The overall Level classification is a composite of the maturity based on these individual criteria. This information can be used to identify areas that require additional work to raise the overall classification level and consideration for inclusion in future versions of USCDI
Maturity – Standards/Technical Specifications Level 1/2 - Must be represented by a vocabulary standard or an element of a published technical specification
Maturity - Current Use Level 2 - Used at scale in more than 2 different production environments
Maturity - Current Exchange Level 2 - Demonstrates exchange between 4 or more organizations with different EHR/HIT systems
Breadth of Applicability - # Stakeholders Impacted Level 2 - Used by a majority of patients, providers or events requiring its use

Comment

Submitted by PACIO-Project on 2022-09-29

PACIO Support to Advance Orders for End of Life Care

Advance the “Orders for End of Life Care” data element under the Order data class to USCDI v4.  It is recognized that the previous concept of “Portable Medical Orders for Life-Sustaining Treatments” was too narrowly focused and additional practitioner-authored orders related to goals of care and specific medical treatments or interventions should be included. These orders for end of life care are established by a practitioner regarding treatments that restore, sustain, or prolong a patient’s life. These types of medical orders are intended to be consistent with the patient’s instructions and wishes. The PACIO Community strongly recommends this data element be promoted to USCDI V4.

Submitted by Svellanky on 2022-09-29

CMS-CCSQ Support for Orders for End of Life Care for USCDI v4

Orders for end-of-life care (comfort care, palliative care, hospice) include information that has the power to actionably communicate an individual’s wishes at their end of life and is yet to be represented in USCDI. These data need to be interoperable and exchangeable to reduce discordance between care provided and patient wishes, and to enhance value of care at end of life. This data element was previously identified as a joint CMS-CDC priority and supports advancing patient care quality, which aligns with the purpose of the USCDI (setting a foundation for broader sharing of electronic health information to support patient care). Maturity: ONC recently advanced this data element to Level 2 based on maturity of standards. Current uses, exchange, and use cases: Orders (service requests) for end-of-life care services are routinely captured in EHR systems used by hospitals and providers and are used in CMS quality reporting eCQMs across programs. The information is important for quality improvement, clinical decision support, and care coordination to ensure patients are provided the proper end-of-life care as needed. The relevant information required to support a transfer of care request from one practitioner or organization to another that provides end-of-life care services is critical.

Submitted by Lynda S Hoeksema on 2022-04-29

PACIO update re Level 1 Orders for End of Life Care Data Element

The PACIO Community (Post-Acute Care Interoperability) leadership wishes to update the ONC/USCDI with current efforts relating to the concept of Advance Directives and portable clinician authored orders in that domain. The PACIO Community continues to test FHIR interoperability of Advance Directive Information (ADI) during HL7 and CMS Connectathons (September 2021, May 2022, and July 2022) and resolve HL7 balloting comments in preparation for publication in upcoming months of a FHIR based Advance Directive Information Implementation Guide (IG) as Standard for Trial Use-1 (STU1).  As part of the work, PACIO completed an environmental scan across states and other jurisdictions to inform a design that could work on a national level while allowing for jurisdictional differences. PACIO’s focus has been on “model of meaning” of ADI concepts as opposed to “model of use” where only specific narrative or forms are used. A benefit of exchanging semantic meaning recognizes the current reality of diverse state and local jurisdictional processes present as the nation moves towards standards-based data exchange. The PACIO ADI Community has been working with external national organizations on the concept of practitioner authored information and orders that includes all types of advance directive concepts, including during emergency situations, end of life situations, and whenever an individual is unable to express for themselves their wishes and desires. The PACIO Community is working with external stakeholders both within the interoperability and clinical ecosystems to tease out how the concepts of clinician/practitioner authored orders (including portable non-location-based orders) in the domain of “Advance Directive” would differ from other “Types of orders for medical care/services” as currently in USCDI level 2 and/or “Orders for End-of-Life Care” in USCDI Level 1.

Submitted by nedragarrett_CDC on 2022-04-28

CDC-CMS Joint Priority Data Element

 Both CDC and CMS support inclusion of this element in v3. More details are provided in the joint letter sent to ONC. 

Submitted by sg999 on 2022-03-22

CMS-CCSQ Support for Orders for End-of-Life Care

CMS-CCSQ continues to advocate for orders for end-of-life care (comfort care, palliative care, hospice) to be reclassified to Level 2. Orders for end-of-life care (comfort care, palliative care, hospice) include information that has the power to actionably communicate an individual’s wishes at their end of life. This data needs to be interoperable and shareable to reduce discordance between care provided and patient wishes and enhance value of care at end of life. This element represents a priority data concept that is not yet represented in USCDI and must be prioritized. Maturity:
  • Current standards:
    • Orders can be exchanged in mature FHIR standards, including Service Request profile in the QI Core IG
    • End-of-Life Care concepts are captured in mature terminology: LOINC, SNOMED
  • Current uses, exchange, and use cases: Orders (service requests) for end-of-life care services are routinely captured in EHR systems used by hospitals and providers and are used in CMS quality reporting eCQMs across programs including IQR, QPP, and Promoting Interoperability programs. CMS requires the submission of order (service request) related data for quality measurement for eligible hospitals/CAHs and clinicians using ONC Certified Health Electronic Record Technology (CEHRT)—this includes orders (service requests) for an intervention (i.e., palliative care, hospice, comfort care).

Submitted by sg999 on 2022-02-13

CMS-CCSQ: request for additional information from ONC

CMS-CCSQ requests additional information and rational from ONC regarding the decision to classify Orders for end-of-life care as Level 1. Orders for end-of-life care (comfort care, palliative care, hospice) include information that has the power to actionably communicate an individual’s wishes at their end of life. This data needs to be interoperable and shareable to reduce discordance between care provided and patient wishes and enhance value of care at end of life. This element represents a priority data concept that is not yet represented in USCDI and must be prioritized.

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