PACIO Advance Directive Interoperability Implementation Guide
0.1.0 - STU 1 Ballot

PACIO Advance Directive Interoperability Implementation Guide, published by HL7 Patient Empowerment Working Group. This is not an authorized publication; it is the continuous build for version 0.1.0). This version is based on the current content of https://github.com/HL7/fhir-pacio-adi/ and changes regularly. See the Directory of published versions

FHIR Artifacts

This page provides a list of the FHIR artifacts defined as part of this implementation guide.

Behavior: Capability Statements

The following artifacts define the specific capabilities that different types of systems are expected to have in order to comply with this implementation guide. Systems conforming to this implementation guide are expected to declare conformance to one or more of the following capability statements.

PADI CapabilityStatement

This Section describes the expected capabilities of the PACIO Advance Directive Interoperability (ADI) Server actor which is responsible for providing responses to the queries submitted by the ADI Requestors.

There are two primary vehicles in which Advance Directive Information can be conveyed: DocumentReference and Bundle. Through a DocumentReference, the ADI may be encoded inside directly as content data or referred to through a content reference (pointing to the ADI included in a resource like Binary) or reference a Bundle with the type=document for FHIR encoded data. The resources referred to by the Composition in the document bundle include Patient, Observation,Goal, ServiceRequest, Organization, RelatedPerson, Consent, List, and Provenance.

Structures: Abstract Profiles

These are profiles on resources or data types that describe patterns used by other profiles, but cannot be instantiated directly. I.e. instances can conform to profiles based on these abstract profiles, but do not declare conformance to the abstract profiles themselves.

ADI Goal

This profile defines the base requirements for all ADI Goals.

PACIO ADI Header

This abstract profile defines constraints that represent common administrative and demographic concepts for advance directives information used in US Realm clinical documents.

Structures: Resource Profiles

These define constraints on FHIR resources for systems conforming to this implementation guide

ADI Autopsy Observation

This profile is used to represent the author’s thoughts about autopsy.

ADI Care Experience Preference

Care Experience Preference is a clinical statement that presents the author’s personal thoughts about something a person feels is relevant to their care experience and may be pertinent when planning their care.

PACIO ADI Document Reference

This profile defines constraints that represent the information needed to register an advance directive information document on a FHIR server.

ADI Documentation Observation

This profile is used to indicate if additional advance directive documents, such as physician order for life sustaining treatment (MOLST or POLST) or Do Not Resuscitate Order (DNR) exist and a reference to the document.

ADI Organ Donation

This profile is used to represent the author’s thoughts about organ donation.

ADI Personal Advance Care Plan Composition

This profile encompasses information that makes up the author’s advance care information plan.

ADI Participant

This profile represents a person participating in a persons advance directives in some capacity such as healthcare agent or healthcare agent advisor.

ADI Participant Consent

This profile is used to represent a consent for an advance directive participant such as a healthcare agent or advisor and power or limitation granted to such persons.

ADI Personal Goal

This profile is a statement that presents the author’s personal health and treatment goals that are pertinent when planning their care.

Personal Intervention Preference

This profile is used to represent a personal preference for a type of medical intervention (treatment) request under certain conditions.

ADI Personal Priorities Organizer

Personal Priorities Organizer is used to represent a set of personal goals, preferences or care experiences in a preferred ranked order.

ADI Preference Care Plan

The Preference Care Plan is a means for an individual to express their goals and preferences under certain circumstances that may be pertinent when planning his or her care.

PACIO ADI Provenance

Advance Directive Interoperability Provenance based on US Core to capture, search and fetch provenance information associated with advance directive interoperability data.

Structures: Extension Definitions

These define constraints on FHIR data types for systems conforming to this implementation guide

Attestation Information

The Attestation Information Extension allows for the capture of information relevant to the attestation.

Authorization

The Advance Directive Information Authorization Extension contains the ADI Consent profile which represents information about a patient’s consents.

Clause

A clause or set of clauses relevant to the resource or element being extended

Contextual Value

The Contextual Value Extension represents one or more values with a singular context.

Data Enterer

Data Enterer Extension represents the person who transferred the content, written or dictated, into the Advance Directive document. To clarify, an author provides the content, subject to their own interpretation; a dataEnterer adds an author’s information to the electronic system.

Effective Date

The Advance Directive document effective dates.

Goal Order by Descending Priority

Indicates if the goals are ordered in descending priority (Y) or no specific order (N).

Informant

The Advance Directive Information Informant Extension describes an information source for any content within the Advance Directive document. This informant is constrained for use when the source of information is an assigned health care provider for the patient.

Information Recipient

The Information Recipient Extension records the intended recipient of the advance directive information at the time the document was created.

Jurisdiction

Jurisdiction for which content is applicable.

Participant

The Advance Directive Information Participant Extension identifies supporting entities, including parents, relatives, caregivers, insurance policyholders, guarantors, and others related in some way to the patient. A supporting person or organization is an individual or an organization with a relationship to the patient. A supporting person who is playing multiple roles would be recorded in multiple participants (e.g., emergency contact and next-of-kin).

Performer

The Advance Directive Information Performer Extension represents clinicians who actually and principally carry out the clinical services being documented. In a transfer of care this represents the healthcare providers involved in the current or pertinent historical care of the patient. Preferably, the patients key healthcare care team members would be listed, particularly their primary physician and any active consulting physicians, therapists, and counselors.

Version Number

Advance Directive Information VersionNumber Extension represents a numeric value used to version successive replacement documents.

Terminology: Value Sets

These define sets of codes used by systems conforming to this implementation guide

Advance Directive Categories

Kinds of Advance Directives

This ValueSet is managed at the US National Library of Medicine (NLM) Value Set Authority Center (VSAC): https://vsac.nlm.nih.gov/valueset/2.16.840.1.113883.11.20.9.69.4/expansion

Attester Role

Codes indicating a role of an attester.

Care Experience Preferences

This value set includes concepts representing an individual’s care experience preferences at end of life which can be expressed by the individual in his or her advance care plan),(Data Element Scope: The intent of this value set is to identify personal care experience preferences that may be relevant and could be considered by clinicians when making a treatment/care plan for the person.

This ValueSet is managed at the US National Library of Medicine (NLM) Value Set Authority Center (VSAC): https://vsac.nlm.nih.gov/valueset/2.16.840.1.113762.1.4.1115.11/expansion

Type of clause

Type of clause

ADI Consent Actor Role

This value set identifies the role the advance directive participant has, which could include: healthcare agent, proxy, or advisor roles that individuals commonly designate to empower surrogates to make medical treatment and care decisions when the individual is unable to effectively communicate with medical personnel or requires assistance with decision making.

This ValueSet is managed at the US National Library of Medicine (NLM) Value Set Authority Center (VSAC): https://vsac.nlm.nih.gov/valueset/2.16.840.1.113762.1.4.1046.35/expansion

Consent Type

Codes indicating type of advance directive consents.

Documentation Types

Types of Documents

Healthcare Agent Decisions

Codes indicating decisions a healthcare agent may or may not make on behalf of an individual.

Health Goals

Clinical Focus: This value set includes concepts representing an individual’s goals at end of life which can be expressed by the individual in his or her advance care plan.),(Data Element Scope: The intent of this value set is to identify personal goals that may be relevant and could be considered by clinicians when making a treatment/care plan for the person.),(Inclusion Criteria: Include member value sets for Health Goals at end of life for LOINC and SNOMED CT.),(Exclusion Criteria: None.

This ValueSet is managed at the US National Library of Medicine (NLM) Value Set Authority Center (VSAC): https://vsac.nlm.nih.gov/valueset/2.16.840.1.113762.1.4.1115.7/expansion

Intervention Preferences - Narrative

Clinical Focus: This value set includes concepts representing an individual’s intervention preferences which can be expressed by the individual in his or her advance care plan.),(Data Element Scope: The intent of this value set is to identify personal intervention preferences that may be relevant and could be considered by clinicians or any person or organization that is providing care, treatment, or performing any other type of act to or on behalf of the individual.)

Intervention Preferences - Ordinal

Clinical Focus: This value set includes concepts representing an individual’s intervention preferences which can be expressed by the individual in his or her advance care plan.),(Data Element Scope: The intent of this value set is to identify personal intervention preferences that may be relevant and could be considered by clinicians or any person or organization that is providing care, treatment, or performing any other type of act to or on behalf of the individual.)

Intervention Preferences

Clinical Focus: This value set includes concepts representing an individual’s intervention preferences which can be expressed by the individual in his or her advance care plan.),(Data Element Scope: The intent of this value set is to identify personal intervention preferences that may be relevant and could be considered by clinicians or any person or organization that is providing care, treatment, or performing any other type of act to or on behalf of the individual.)

No Healthcare Agent Included Reason

Includes data absent reason concepts to express why a Healthcare Agent is not included.

Participant Relationships

This value set identifies the relationship an advance directive participant has with the person the advance directive is about.

Personal And Legal Relationship Role Type

Clinical Focus: A personal or legal relationship records the role of a person in relation to another person, or a person to himself or herself. This value set is to be used when recording relationships based on personal or family ties or through legal assignment of responsibility.

Presence Indicator

Codes specifying whether the presence of something exists or is unknown to exist.

Upon Death Preferences

This value set includes concepts representing an individual’s preferences of treatment.

Terminology: Code Systems

These define new code systems used by systems conforming to this implementation guide

ADI Goal Category Code System

Advance Directive Goal Categories

Healthcare Agent Decision Codes

Codes indicating decisions a healthcare agent may or may not make on behalf of an individual.

Example: Example Instances

These are example instances that show what data produced and consumed by systems conforming with this implementation guide might look like

Example-McBee-AutopsyObservation1

Example Patient McBee Autopsy Observation (Thoughts Regarding Autopsy)

Example-McBee-Bundle1

Example Patient McBee ADI Document Bundle McBee 1

Example-McBee-CareExperiencePreference1

Example Patient McBee Care Experience Preference (My Joys)

Example-McBee-CareExperiencePreference2

Example Patient McBee Care Experience Preference (How to care for me)

Example-McBee-CareExperiencePreference3

Example Patient McBee Care Experience Preference (Religious affiliation contact)

Example-McBee-CareExperiencePreference4

Example Patient McBee Care Experience Preference (My unfinished business)

Example-McBee-HealthcareAgent1

Example Patient McBee Healthcare Agent (Sally Bobbins)

Example-McBee-HealthcareAgent2

Example Patient McBee Healthcare Agent (S. Leonard Susskind)

Example-McBee-HealthcareAgentConsent

Example Patient McBee Healthcare Agent Consent

Example-McBee-OrganDonationObservation1

Example Patient McBee Organ Donation Observation 1

Example-McBee-OrganizationAssembler1

Example Patient McBee Assembler Organization

Example-McBee-OrganizationCustodian1

Example Patient McBee Custodian Organization

Example-McBee-PACPComposition1

Example Patient McBee Personal Advance Care Plan Composition Example 1

Example-McBee-PACPProvenance1

Example Patient McBee Provenance

Example-McBee-Patient1

Example Patient McBee Patient Example 1

Example-McBee-PersonalGoal1

Example Patient McBee Personal Goal 1

Example-McBee-PersonalGoal2

Example Patient McBee Personal Goal 2

Example-McBee-PersonalGoal3

Example Patient McBee Personal Goal 3

Example-McBee-PersonalGoal4

Example Patient McBee Personal Goal 4

Example-McBee-PersonalGoal5

Example Patient McBee Personal Goal 5

Example-McBee-PersonalGoal6

Example Patient McBee Personal Goal 6

Example-McBee-PersonalGoal7

Example Patient McBee Personal Goal 7

Example-McBee-PersonalInterventionPreference1

Example Patient McBee Personal Intervention Preference (Palliative Care)

Example-McBee-PersonalInterventionPreference2

Example Patient McBee Personal Intervention Preference (Terminal Illness Health Deterioration)

Example-McBee-PersonalInterventionPreference3

Example Patient McBee Personal Intervention Preference (Artificial Nutrition and Hydration)

Example-McBee-PersonalInterventionPreference4

Example Patient McBee Personal Intervention Preference (Severe Illness or Injury)

Example-McBee-PersonalInterventionPreference5

Example Patient McBee Personal Intervention Preference (Thoughts on CPR 1)

Example-McBee-PersonalInterventionPreference6

Example Patient McBee Personal Intervention Preference (THoughts on CPR 2)

Example-McBee-PersonalInterventionPreference7

Example Patient McBee Personal Intervention Preference (Preferred Location for Last Days)

Example-McBee-PersonalInterventionPreference8

Example Patient McBee Personal Intervention Preference (Death arrangements)

Example-McBee-PersonalPrioritiesOrganizer1

Example Patient McBee Personal Priorities Organizer

Example-McBee-PreferenceCarePlan1

Example Patient McBee Preference Care Plan 1

Example-Smith-Johnson-AutopsyObservation1

Example Patient Smith-Johnson Autopsy Observation (Thoughts Regarding Autopsy)

Example-Smith-Johnson-Bundle1

Example Patient Smith-Johnson ADI Document Bundle Smith-Johnson 1

Example-Smith-Johnson-CareExperiencePreference1

Example Patient Smith-Johnson Care Experience Preference (Role of Religion)

Example-Smith-Johnson-CareExperiencePreference2

Example Patient Smith-Johnson Care Experience Preference (My Likes and Joys)

Example-Smith-Johnson-CareExperiencePreference3

Example Patient Smith-Johnson Care Experience Preference (My Dislikes and Fears)

Example-Smith-Johnson-CareExperiencePreference4

Example Patient Smith-Johnson Care Experience Preference (How to Care for Me)

Example-Smith-Johnson-CareExperiencePreference5

Example Patient Smith-Johnson Care Experience Preference (My Religion)

Example-Smith-Johnson-CareExperiencePreference6

Example Patient Smith-Johnson Care Experience Preference (Religious Contact)

Example-Smith-Johnson-CareExperiencePreference7

Example Patient Smith-Johnson Care Experience Preference (Religious Contact)

Example-Smith-Johnson-CareExperiencePreference8

Example Patient Smith-Johnson Care Experience Preference (Religious Contact)

Example-Smith-Johnson-DocRef-Binary1

Example Patient Smith-Johnson DocumentReference Binary Data Attachment

Example-Smith-Johnson-DocRef-Bundle

Example Patient Smith-Johnson DocumentReference Bundle

Example-Smith-Johnson-DocRef-Device1

Example Patient Smith-Johnson DocumentReference Device

Example-Smith-Johnson-DocRef-DocumentReference

Example Patient Smith-Johnson DocumentReference

Example-Smith-Johnson-DocumentationObservation1

Example Patient Smith-Johnson PMOLST Documentation Observation

Example-Smith-Johnson-HealthcareAgent1

Example Patient Smith-Johnson Healthcare Agent (Charles Johnson)

Example-Smith-Johnson-HealthcareAgent2

Example Patient Smith-Johnson Healthcare Agent (Debra Johnson)

Example-Smith-Johnson-HealthcareAgentConsent

Example Patient Smith-Johnson Healthcare Agent Consent

Example-Smith-Johnson-Notary1

Example Patient Smith-Johnson Notary

Example-Smith-Johnson-OrganDonationObservation1

Example Patient Smith-Johnson Organ Donation Observation 1

Example-Smith-Johnson-OrganizationAssembler1

Example Patient Smith-Johnson Assembler Organization

Example-Smith-Johnson-OrganizationCustodian1

Example Patient Smith-Johnson Custodian Organization

Example-Smith-Johnson-PACPComposition1

Example Patient Smith-Johnson Personal Advance Care Plan Composition Example 1

Example-Smith-Johnson-PACPProvenance1

Example Patient Smith-Johnson Provenance

Example-Smith-Johnson-Patient1

Example Patient Smith-Johnson Patient Example 1

Example-Smith-Johnson-PersonalGoal1

Example Patient Smith-Johnson Personal Goal 1

Example-Smith-Johnson-PersonalInterventionPreference1

Example Patient Smith-Johnson Personal Intervention Preference (Significant Pain or Suffering)

Example-Smith-Johnson-PersonalInterventionPreference3

Example Patient Smith-Johnson Personal Intervention Preference (Mental Illness Deterioration)

Example-Smith-Johnson-PersonalInterventionPreference5

Example Patient Smith-Johnson Personal Intervention Preference (Final Days Location)

Example-Smith-Johnson-PersonalInterventionPreference6

Example Patient Smith-Johnson Personal Intervention Preference (Death Arrangements)

Example-Smith-Johnson-PreferenceCarePlan1

Example Patient Smith-Johnson Preference Care Plan 1

Example-Smith-Johnson-PreferenceCarePlan2

Example Patient Smith-Johnson Preference Care Plan 2

Example-Smith-Johnson-PreferenceCarePlan3

Example Patient Smith-Johnson Preference Care Plan 3