Submitted by LisaRNelson on 2021-09-28
|Submitted By: Matt Elrod on behalf of ADVault, Inc. / MaxMD|
|Data Element Information|
|Use Case Description(s)|
|Use Case Description||Use Case 1: A patient who has a portable medical order for life-sustaining treatment is admitted to a hospital for emergency care
Frank has end-stage renal disease, receives home health services at his residence, and receives dialysis three times a week. Due to his severely debilitating disease, at the request of his palliative care nurse during one of her home visits, he creates an advance directive.
Frank shares access to his advance directive information with his primary care physician at his next encounter, and in accordance to his medical assessment of Frank’s condition his physician recommends creation of a portable medical order for life-sustaining treatment. Frank’s physician tells him that a portable medical order will be followed if he is treated by EMS or emergency room medical teams, and that the State Frank lives in has an Advance Directive registry and repository that is checked by EMS and the hospital EMRs as part of accessing his medical history when they render emergency, triage care.
Frank’s physician writes an order, after discussion with Frank about his treatment preferences, that specifies if Frank is found with no pulse and is not breathing to attempt CPR resuscitation, which can be abbreviated in medical terms to Full Code/CPR.
The portable medical order further instructs that if Frank is not in cardiopulmonary arrest, he wants Selective Treatments provided that attempt to restore function while avoiding intensive care and resuscitation efforts. He asks his doctor to write into the space provided on the form that he does NOT want dialysis at the hospital nor does he want to be dependent on machines to keep him alive, as he has been on dialysis for some time and he knows his health status has continued to decline. While he drives himself to dialysis appointments three times a week, he doesn’t want dialysis treatments to continue any longer if experiences a health emergency. The portable medical order for life-sustaining treatment is written as Frank requests, signed by Frank and his physician, and Frank is provided a copy of the form at the conclusion of the encounter.
Frank is at his dialysis appointment the next month and begins experiencing chest pain, mild shortness of breath, and dizziness. 911 is called and due to their access of the registry and repository, they are informed of Frank’s portable medical order. They transport Frank to the nearby hospital emergency room where acute renal failure is diagnosed. The hospital EMR retrieves his portable medical order upon intake and the ED physician instructs the team that Frank does not wish to be put back on dialysis once he is stabilized. Frank is admitted to the hospital to receive hospice services with no dialysis so he can experience care that is aligned with his values and end-of-life goals of care.
Use Case 2: A patient who has a portable medical order for life-sustaining treatment is discharged from a hospital and admitted to a Skilled Nursing Facility
Evelyn is hospitalized with heart failure and has a portable medical order created for her by the physician who is treating her condition. She knows she will be transferred to a Skilled Nursing Facility nearby, as her condition requires ongoing skilled services. She discusses risks and benefits of treatments for her condition with the physician and after consulting with her daughter instructs her physician to ensure the order contains instructions for No CPR and that she wants comfort-focused treatment if she experiences another acute change in condition. The portable medical order for life-sustaining treatment is part of the medical information on Evelyn that is transmitted to a national HIE, and Evelyn is given a copy of the portable medical order for life-sustaining treatment so she can give a copy to her daughter when next she sees her.
Upon admission to the skilled nursing facility, the EMR queries the national HIE to retrieve medical information on Evelyn and receives a copy of the portable medical order for life-sustaining treatment. The EMR flags Evelyn’s record for No CPR, and they bring in palliative care for a consult with Evelyn. She is able to receive care targeted to meeting her emotional and medical needs at the skilled nursing facility with the confidence that if she experiences another episode of heart failure she will not be sent back to the hospital but will instead receive supportive services for her and her family as she had directed.
|Estimated number of stakeholders capturing, accessing using or exchanging||There are over 5,000 hospitals and 231,000 small practices, long-term post-acute care centers, skilled nursing facilities and other healthcare providers who have clinical record technologies which are suitable for the capture, access, use or exchange of this data element. In addition, there are over 190 million Americans over the age of 18 who should be creating, digitally storing and exchanging advance directives data with their healthcare providers. Currently, there are over 200 health systems, four federal agencies, 59 state and regional Health Information Networks, and other healthcare organizations using a wide variety of vendor platforms who have the ability to capture, access, use or exchange this data element.|
|Maturity of Use and Technical Specifications for Data Element|
|Applicable Standard(s)||Portable Medical Orders for Life Sustaining Treatment
The currently supported digital interchange format for portable POLST orders is a pdf document. The pdf document can be represented as a C-CDA Unstructured Document or a FHIR DocumentReference to enable key administrative information to be processed. There is no standard guidance about the expected content in a portable medical order for life sustaining treatments. The content varies by state and by EMR system.
Portable Medical Orders for Life Sustaining treatment are a type of Medical Order.
Data Element Code Definition
Portable medical order form 93037-0
urn:oid:2.16.840.1.113883.6.1 Physician Order for Scope of Treatment which encompasses Physician Orders for Life-Sustaining Treatment (POLST) or Medical Orders for Life-Sustaining Treatment (MOLST).
In the context of a Patient Summary or Encounter Summary authored by a clinician or assembled by clinician’s EMR system, observations verifying a patient’s advance directive information and medical orders for life sustaining treatments using established standards for recording this type of information documented by providers.
If a person has a medical order or physician order for life sustaining treatment (MOLST or POLST). This observation does not indicate what orders are included in the MOLST or POLST. It indicates if a MOLST or POLST exists.
If a MOLST or POLST exists, the template includes a reference structure that can be used to point to the MOLST or POLST document.
The vocabulary and structure needed to express this observation is provided in the HL7 CDA® R2 Implementation Guide: Personal Advance Care Plan (PACP) Document, Release 1 - US Realm STU Release 2 August 2020 Volume 2 – Templates.
This observation can be used to document a patient authored statement about portable medical orders for life sustaining treatments or physician authored statements about there being portable medical orders for life sustaining treatments. Note that a physician’s own medical orders placed for life sustaining treatments are documented as medical orders placed within the physician’s own EMR.
|Additional Specifications||HL7 CDA® R2 Implementation Guide: C-CDA R2.1; Advance Directives Templates, Release 1 - US Realm
Advance Directive Templates are important components of the C-CDA standard, yet to date, their usage in the standard has been optional.
New focus within the industry on patient-centered care plans and value-based care has raised implementer interest in care planning and advance care planning. As implementers have started to include advance directive information, it became clear that additional guidance was needed and that the template designs required refinement. Also, new standard developed to represent personal advance care planning information have been developed to communicate health goals and treatment preferences expressed by the patient. The older Advance Directive templates needed revisions to take the newer work into consideration.
As advance care planning information began to be shared, concern increased about the possibility that clinicians might misinterpret patient wishes in a way that would result in errors that risk patient safety or that violate patient intent. Information context is crucial when it comes to interpreting advance directives. Directives should always be maintained in their original form - not chopped up and stored as structured data. There is a very high risk that the conversion from text to structure will lose critical information. Changes were needed to the templates to clarify that these observations DO NOT convert patient wishes into structured data that acts as a decision or an order. The structured data is used to document the decision to receive life-sustaining treatment is present in the source document that describes the patient's wishes, health goals, and treatment preferences. Fixing this issue was a critical need.
For these reasons, the earlier versions of the Consolidated CDA Advance Directive Templates needed to be clarified and revised, and some additional templates needed to be added.
|Current Use||In limited use in production environments|
Previous unsolicited proposal "ISA and USCDI Recommendations: Advance Directives Data Class Recommendations" submitted on June 4, 2020 by ADVault, Inc. L. Scott Brown and MaxMD Lisa R Nelson, MS, MBA and updated on October 20, 2020.
USCDI Proposal for Advance Directives Data Class 20201022.pdf
|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.|
The data element has been tested at scale between an advance directives registry and repository deployed and maintained by ADVault, Inc., on the one hand, and multiple hospitals and Health Information Networks, on the other hand, including eHealth Exchange and Chesapeake Regional Information System for Patients (CRISP).
|Restrictions on Standardization (e.g. proprietary code)||There are no restrictions on the standardization of this data element.|
The value sets used for the data element are all recorded with the National Library of Medicine Value Set Authority Center (VSAC) and freely available for use under the Unified Medical Language System® Metathesaurus License (UMLS).
Finally, all of the OIDs are registered with HL7. Everything required to standardize this data element is freely and universally accessible.
|Privacy and Security Concerns||The use and exchange of this data element raises concerns associated with data provenance and authentication. However, HL7 standards addressing medical orders and portable documents offer potential solutions to these concerns.|
|Estimate of Overall Burden||Implementation of the data element is not burdensome. All of the LOINC codes, value sets and data transport standards exist and are widely and freely accessible.|
|Other Implementation Challenges||Any challenges to implementation of the data element are related to existing paper and non-interoperable electronic processes and are not technological. Natural resistance to process change and a perceived associated risk, combined with a historical culture of “a clinician has to document it for it to be correct,” result in a refusal by healthcare providers to permit patients to insert information related to their personal goals, preferences, and priorities for care into their electronic medical records. The issue is further complicated by a stigma attached to death in American culture and medical professionals’ training to view death as the enemy to be defeated by any means necessary and at all cost, often disregarding the wishes of the patient or the quality of life associated with intensive medical interventions at the end of life.
Paper documents and silo’d EMR attempts to address the capture of patient values and goals of care have created fast paths that give the illusion of person-centered care delivery, yet without interoperable standards for this important information there is not a path forward for moving to a digital, person-centered care delivery system where the patient guidance is at the center of care and not a passive bystander in their own healthcare experience.
Submitted by Lynda S Hoeksema on 2021-09-30
PACIO support for “Advance Directive Orders” and USCDI Level 2The PACIO Project supports expanding this data element to “Advance Directive Orders” and move to under the USCDI "Orders" Data Class. PACIO also strongly recommends advancement of the data element to USCDI Level 2. PACIO Community members remain engaged with ongoing work focused on practitioner-authored orders. 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.