PACIO Advance Directive Interoperability Implementation Guide
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PACIO Advance Directive Interoperability Implementation Guide, published by HL7 International / Patient Empowerment. This guide is not an authorized publication; it is the continuous build for version 1.0.0 built by the FHIR (HL7® FHIR® Standard) CI Build. 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.

ADI 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.

Behavior: Search Parameters

These define the properties by which a RESTful server can be searched. They can also be used for sorting and including related resources.

Bundle-composition

Search by reference to a composition

Bundle-identifier

Search by business identifier

Bundle-timestamp

Search by date in time

Bundle-type

Search by type

Consent-id

Search by FHIR Resource ID

DocumentReference-authenticator

Search by who/what authenticated the document

DocumentReference-author

Search by who and/or what authored the document

DocumentReference-category

Search by categorization of document

DocumentReference-contenttype

Search by MIME type of the content, with charset etc.

DocumentReference-custodian

Search by organization which maintains the document

DocumentReference-date

Search by when this document reference was created

DocumentReference-description

Search by human-readable description

DocumentReference-encounter

Search by encounter reference

DocumentReference-event

Search by main clinical acts documented

DocumentReference-facility

Search by kind of facility where patient was seen

DocumentReference-format

Search by format code content rules for the document

DocumentReference-id

Search by FHIR Resource ID

DocumentReference-identifier

Search by business identifier of the attachment binary

DocumentReference-language

Search by human language of the content (BCP-47)

DocumentReference-location

Search by uri where the data can be found

DocumentReference-patient

Search by who/what is the subject of the document

DocumentReference-period

Search by time of service that is being documented

DocumentReference-related

Search by related identifier or resource

DocumentReference-relatesto

Search by target of the relationship

DocumentReference-relation
Search by relation code (replaces transforms signs appends)
DocumentReference-security-label

Search by document security-tags

DocumentReference-setting

Search by additional details about where the content was created (e.g. clinical specialty)

DocumentReference-status
Search by document reference status code (current superseded entered-in-error)
DocumentReference-subject

Search by who/what is the subject of the document

DocumentReference-type

Search by kind of document

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 Composition 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.

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 Notary

This profile represents a person participating as a notary for a person’s advance directives.

ADI Organ Donation

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

ADI Participant

This profile represents a person participating in a person’s 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 Advance Care Plan Composition

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

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.

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.

ADI Provenance

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

ADI Witness

This profile represents a person participating as a witness for a person’s advance directives.

Personal Intervention Preference

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

Structures: Extension Definitions

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

Clause

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

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.

Enclosed Precondition

The Enclosed Precondition Extension allows for a precondition to be applied to an advance directive observation or goal. When applied to Goal instance, the stated goal only applies if the precondition is met. For example, the precondition ‘If I am so sick or seriously injured that I cannot express my own medical treatment preferences’ could be applied to the patient’s goal of ‘Avoiding prolonged dependence on machines’. When applied to an Observation instance, it is important to note that the precondition applies only to the preference expressed within the observation, not to the observation itself, since the act of recording the preference as an observation has already been done. For example, the precondition ‘If I am nearing end of life’ could be applied to the preference ‘Please attempt to notify someone from my religion at the following number…’ recorded within an observation.

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.

Jurisdiction

Jurisdiction for which content is applicable.

Notary Information

The Notary Information Extension allows for the capture of information relevant to the notary.

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.

Attester Role

Codes indicating a role of an attester.

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.

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.)

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.)

No Healthcare Agent Included Reason

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

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.

Terminology: Code Systems

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

ADI Goal Category Code System

Advance Directive Preference Category

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.

Care Plan for Permanent, severe brain damage

Example Patient Smith-Johnson Preference Care Plan 2

Care Plan for Terminal illness, lack of meaningful interaction

Example Patient Smith-Johnson Preference Care Plan 3

Care Plan for Unconscious, vegetative state, coma for McBee

Example Patient McBee Preference Care Plan 1

Care Plan for Unconscious, vegetative state, coma for Smith-Johnson

Example Patient Smith-Johnson Preference Care Plan 1

Example-McBee-ADINotary

Example Patient McBee Care ADI Notary

Example-McBee-ADIWitness

Example Patient McBee Care ADI Witness

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-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-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-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-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-PersonalGoal2

Example Patient Smith-Johnson Personal Goal 2

Example-Smith-Johnson-PersonalGoal3

Example Patient Smith-Johnson Personal Goal 3

Example-Smith-Johnson-PersonalInterventionPreference1

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

Example-Smith-Johnson-PersonalInterventionPreference2

Example Patient Smith-Johnson Personal Intervention Preference (Specific Circumstance)

Example-Smith-Johnson-PersonalInterventionPreference3

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

Example-Smith-Johnson-PersonalInterventionPreference4

Example Patient Smith-Johnson Personal Intervention Preference (Severe Irreversible Brain Injury or Illness)

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)

My Advance Care Goals

Example Patient McBee Personal Priorities Organizer

Personal Advance Care Plan

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

Personal Advance Care Plan Document for Roger McBee

Example Patient McBee Personal Advance Care Plan Composition Example 1

Priorities for Goals and Preferences

Example Patient Smith-Johnson Personal Priorities Organizer