Personal Advance Care Plan
Description
Advance care plan is a general term for any documentation or other recordation of a person’s medical treatment goals, preferences, and priorities for some future point in time, under certain circumstances when the individual cannot make medical treatment decisions or communicate his or her goals, preferences, and priorities with the care team. An advance care plan places an emphasis on communication, as opposed to legal formalities. A PACP is a term specifically defined by HL7 as a template to facilitate the sharing of information expressed in advance care plans. A PACP may include the type of information contained in a living will and/or a durable medical power of attorney, and it also may include other medical interventions experience preference and instructions that help a healthcare agent make treatment decisions on the person’s behalf, and can be used by medical professionals to inform their medical interventions and treatment planning for the patient. Within the family of documents that have been defined under Consolidated CDA, the PACP document can be classified as a type of patient-generated document. The PACP document facilitates digital exchange of information previously and currently captured and shared using paper documents. Digital exchange of this type of data has become particularly critical within the context of COVID-19. To reduce the spread of disease, hospitals have disallowed patient family members and/or representatives to be present when the patient is admitted and as medical interventions are rendered, while also prohibiting acceptance of paper documents due to concerns of contagion. A PACP may include information relating to the appointment of a healthcare agent and alternate agents and establishing their authorized powers and limitations. It also may include information relating to any or all of the following: goals, preferences, and priorities for medical interventions (e.g., palliative and/or hospice care), including medical treatment preferences, based on the patient’s individual values, spiritual and religious beliefs, and personal definitions of quality of life; instructions to be followed after death (e.g., organ donation and autopsy); and information about who has signed, witnessed, and notarized the information authored by the individual, if available and appropriate. The set of recognized kinds of advance directive documents include concepts from the value set: Advance Directives Categories urn:oid:2.16.840.1.113883.11.20.9.69.4 which is openly available for reference in the National Library of Medicine’s Value Set Authority Center. It can be referenced using this url: https://vsac.nlm.nih.gov/valueset/2.16.840.1.113883.11.20.9.69.4/definition
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| Submitted By: Matt Elrod on behalf of ADVault, Inc.
/ ADVault, Inc.
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| Data Element Information |
| Use Case Description(s) |
| Use Case Description |
Interoperable advance directives information enables patient goals, preferences, and priorities to be available across the healthcare eco-system, and gives the patient a means to influence and guide his or her care even during those time when the person is unable to communicate with medical personnel Advance directive information is at the heart of person-centered care. Advance directives guide transitions of care and delivery of care that align more closely with the patient’s values and personal goals of care, which improves health outcomes, patient/family satisfaction. Advance directives have the power to remove the need for healthcare providers, caregivers, and family/friends to guess what the patient would have wanted to happen (or not to happen) during the course of care delivery. For advance directive information to be effective, however, all stakeholders in healthcare must be able to locate, retrieve, and consume the information 24/7/365, wherever they are needed.
• Use Case 1: Create and share advance directives information.
• Use Case 2: Update and share advance directives information to support a transition of care.
• Use Case 3: Request access to the current version of a person’s advance directives information.
The information below describes the three use cases and includes examples to demonstrate the use that is envisioned.
Use Case 1: Create and share advance directives information
Sherrie has Sickle Cell Disease and is concerned that if she contracts COVID-19 and becomes unable to communicate with medical personnel, they will not be familiar with her history and specific treatment needs. COVID-19 has created a reluctance in providers to allow patients to bring paper documents into a care facility, making her paper advance directive information ineligible as a replacement source of information if Sherrie is unable to communicate for herself during an episode of care. As a result of the heightened sensitivity to paper documents as a reference source during care delivery and restrictions on non-patient visitation or presence in care settings, neither healthcare agents nor traditional paper documents used by patients to express their personal healthcare goals and treatment preferences are available. Sherrie uses a consumer-facing tool to create a digital personal advance care plan and stores it in a registry so that her healthcare providers can locate and retrieve it if necessary. Sherrie also ensures her durable medical power of attorney and primary care physician have access to her electronic advance directive information so that if either are contacted by the treating provider during a health crisis or emergency, they can provide emergency access to Sherrie’s advance directive information in order to inform treatment.
Use Case 2: Update advance directives information to support a transition of care.
Samuel is an older citizen who lives in a skilled nursing facility (SNF), and he had previously created a personal advance care plan (PACP) on paper, which is provided to the SNF by a family member upon admission. However, he wants to supplement his advance directive information with situation-specific preferences, e.g., “receive care in place and do not hospitalize” in the event that he contracts COVID-19. In addition, he had previously designated his wife as his durable medical power of attorney, but as she passed away last year, Samuel needs to identify another individual to act in this capacity should he become unable to communicate. With the help of the SNF facility’s staff, he records an audio message of his situation-specific COVID-19 instructions. The facility staff also assist Samuel with update of his PACP with a new healthcare agent, thereby creating a more current version of his PACP. The facility stores a scanned copy of the updated, current advance directive information in his clinical record. They also help him share a copy of his updated advance directive information with his new healthcare agent and primary care physician, as part of ensuring the information is available to facility staff and other medical personnel should he contract COVID-19 and become unable to communicate for himself. The skilled nursing facility’s EMR is connected to the various HIE’s and registries, as part of ensuring the updated advance directives information is available to other providers and health systems, should Samuel suffer a health crisis or emergency.
Use Case 3: Request access to the current version of a person’s advance directives information.
Mary is 61 years old and scheduled for a routine screening colonoscopy which involves anesthesia. She has previously been in good health. The nurse asks her whether or not she has an advance directive, she responds affirmatively. The location of her advance directive information is recorded in the medical record, but because Mary is alert and communicating normally, there is no reason to access the content of her information at this time. She is able to speak for herself related to goals of care and treatment decisions, unless she loses decision-making capacity, at which time her advance directive information would be retrieved.
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| Estimate the breadth of applicability of the use case(s) for this data element
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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. |
| Healthcare Aims |
- Improving patient experience of care (quality and/or satisfaction)
- Reducing the cost of care
- Improving provider experience of care
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| Maturity of Use and Technical Specifications for Data Element |
| Applicable Standard(s) |
HL7 CDA® R2 Implementation Guide: Personal Advance Care Plan (PACP) Document, Release 1 - US Realm STU Release 2
The PACP document is a CDA document template designed to share information created by an individual to express his or her care and medical treatment goals, preferences, and priorities for some future point in time, under certain circumstances when the individual cannot make medical treatment decisions or communicate his or her goals, preferences, and priorities with the care team. The purpose of the PACP document is to ensure that the information created by the individual is available and considered in clinical care planning, and the focus of the standard is sharing patient generated information. It should not matter if the source information is documented on a piece of paper, in a video recording, or in a consumer-controlled application that exists for this purpose. The standard provides a means to share this information in a standard way with a system that maintains a clinical record for the person. It is not intended to be a legal document or a digitization of a legal document. However, a PACP can reference a legal document, and it can represent information contained in a legal document such as the appointment of healthcare agents and the identity of witnesses or a notary.
https://www.hl7.org/implement/standards/product_brief.cfm?product_id=434
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| 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 type of content 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.
https://www.hl7.org/implement/standards/product_brief.cfm?product_id=473 |
| Current Use |
In limited use in production environments |
| Supporting Artifacts |
Previous unsolicited ISA and USCDI 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.docx
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| Extent of exchange
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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 |
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).
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| Potential Challenges |
| Restrictions on Standardization (e.g. proprietary code) |
There are no restrictions on the standardization of this data element. |
| Restrictions on Use (e.g. licensing, user fees) |
The identifiers, names and codes underlying the data element are all codes registered with and administered by Regenstrief Institute as part of the Logical Observation Identifiers Names and Codes (LOINC) system. Consequently, they are universally available pursuant to the LOINC and RELMA Terms of Use, Copyright Notice and License.
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.
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| Privacy and Security Concerns |
The use and exchange of this data element raises concerns associated with data provenance and authentication. However, the HL7 standards developed for the advance directives class of data have focused on issues of data provenance from inception.
Templates and guidance for this class of data clearly define how to represent the semantics needed to clarify what information was authored by the patient his or herself (as in the case of a Personal Advance Care Plan), and what information was authored by a healthcare provider (as in the case of portable medical orders for life-sustaining treatments).
The recently balloted version of the Personal Advance Care Plan specification also clarifies how to record information about an organization that plays the role of an “assembler,” merely outputting patient authored information in a standardized exchange format and not authoring any new content about the patient. In addition, implementers can use the HL7 Digital Signature standard that defines how to digitally sign C-CDA documents. |
| 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. |
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Submitted by yale-coredQMRoadmap on
CMS-CCSQ Support for Personal Advance Care Plan 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 these four data elements (only referencing Personal Advance Care Plan here) 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.