Definitions for Goals, Preferences, and Priorities
Here’s what I had so far and how I think our two views complement each other. I’m not wed to what we call the buckets, these are just the terms that have jumped out at me so far from my survey of documents and merged thinking with what I know about the C-CDA templates built under C-CDA R2.0 which carried forward into C-CDA R2.1 as is. My structure already has 2 layers. It also borrow from what I know about decision trees. (I also have an MBA with a concentration in Information Management Systems, so I tend to mix in that type of thinking too. It isn’t uncommon for me to feel comfortable mixing concepts of marginal utility into these care planning discussions. Some people like it, and others find the language to be too foreign. You may have to adjust for some of my language choices.)
Here is a decision tree to visualize if it is needed to understand some of my definitions. Squares are decision points. The lines out of the squares (branches) are events that may happen or interventions and treatments that can be taken. The circles are intermediate outcomes. The lines out of the circles (branches) are events that may happen or interventions treatments that can be taken. The triangles are final resulting outcomes.
Types of data needing different types of CDA Clinical Statement models:
1.Care Team data – This specifically identifies individuals playing certain roles to take care of the person. As a minimum it includes possible roles for the person, the person’s Primary Health Care Agent, Alternate Health Care Agent, and Secondary Alternate Health Care Agent (I am typically seeing these three spots, a PCP, whatever other roles might be available to help prepopulate with typical concepts, then full ability to make up other roles that make sense for the person’s situation (e.g. See Eye Doctor care taker). I will need to create these templates, and intend to build in this type of flexibility for the value set ofcare team member roles.
Clinical statement modeling: A Care Team Member Observation (classCode=OBS moodCode=”EVN|INT” where EVN expresses current members in current care team roles and INT expresses intended members in future care team roles) with an author to encode who made the statement and an informant to encode the person providing the information. When moodCode is INT, the Observation includes a precondition to express the criteria under which that person would be intended to play the expressed role. The code element of the Care Team member observation holds the concept for “Who is a Care Team Member?”. The value element holds the encoded role (from a small but open value set), or original text is used to hold a role description that is not coded. A participant (for individuals who are not clinicians or service providers) or perfomer (for clinicians/service providers) is used to hole the person and, if appropriate, the person’s organization, licensure or role through their personal or legal relationship with the patient, etc.
2.Me data – This is a broader term that would encompass Goals, Preferences and Priorities
a.Goals – (CDA Template exists, but may need further constraints or more detailed implementation guidance regarding its use.) These are statements about observable outcomes/health statuses which results which from certain actions/interventions. A goal is simply a desired outcome in a particular circumstance. In the decision tree diagram, they are represented as the circles (intermediate outcomes/health statuses) and triangles (ultimate outcomes/health statuses).
b.Clinical statement modeling: A goal observation (classCode=OBS, moodCode=”GOL” negationInd=”true|false”). The code element encodes the type of goal statement and the value element (data type ST) hold the statement of the person’s goal. The Observation may include a precondition to express the criteria under which that the stated goal would apply. [Note: the precondition is currently pre-coordinated into the LOINC Code.] If there is more than one goal for the stated circumstance, use multiple value elements to report the full set of goals for that circumstance. Nothing would be implied about priority from the order of the value elements. If negationInd is true, then the statement establishes that the value element is not a goal. (NegationInd acts as an actionNegation, not a valueNegation.) An entryRelationship (typeCode = “COMP”) is added to encode a ranking for the goal. This component is an observation. The code tells the concept of a “ranking”, the value holds the number on the scale, the reference ranges describe the scale, and the interpretationCode holds the associated meaning of the selected value.
c.Preferences – (A CDA Template does not yet exist, but I will be making one) These are statements about the what branches (interventions and actions) are preferred (or not) under certain circumstances.
Clinical statement modeling: A preference (classCode=OBS (for tests)|PROC|SBADM|SPLY|ENC|ACT, moodCode=”INT” negationInd=”true|false”). The code element encodes the preference for a type of intervention. If negationInd is true, then the statement establishes that this type of intervention is not preferred. (NegationInd acts as an actionNegation for observation acts.)The acts may include a precondition to express the criteria under which that the preference would apply. [Note: the precondition is currently pre-coordinated into the LOINC Code.] An entryRelationship (typeCode = “COMP”) is added to encode a ranking for the preference. This component is an observation. The code encodes the concept of a “ranking”, the value holds the number on the scale, the reference ranges describe the scale, and the interpretationCode holds the associated meaning of the selected value.
d.Priorities – (This template does not exist in C-CDA.) – Priorities represent an ordering of goals or preferences so as to show relative importance of certain goals or preferences under a specific circumstance. A goal or preference that is higher in the list is more important to the person that a goal or preference that is lower in the list.
Clinical statement modeling:This will be an organizer that can be used to order the goals and preferences under a certain circumstance so a person can show what goals and preferences are most important to them under different circumstances. Since substitute judgement often requires making “trade-off” choices that achieve an optimal solution, all things considered. I envision this organizer to be two-dimensional. Each entry can have a ranking as you have shown below, but then all entries within the organizer will be in a sequence order in the organizer from most important to least important, relative to each other. It helps when you get a lot of things that all score a 3 or 4 in the individual ranking.If a set of priorities hold only goals, then it is treated as a complex goal statement.If a set of priorities hold only preferences, then it is treated as a complex intervention statement. If a set of priorities holds a mix of goals and preferences then it is treated as the type of statement at the top of the priority list (goal if top priority is a goal, preference if the top priority is a preference.)
3.Living Will data – This well be structurally just like the 3 above, but they apply specifically when the certain circumstance in of life-limiting illness. (I believe I will be able to use the same base entry templates within this section.)
4.Upon Death data - These are Goals, Preferences and Priorities that have to do with things that happen after the person has died. ( I believe I will be able to use the same base entry templates within this section). I agree it includes:
- Funeral
- Autopsy
- Organ donation
- Hospital visitation rights
I don’t put POLST/MOSLT in this category. I am keeping these documents out of scope for my project as they are not generated by the person. These “orders” are written by physicians. They certainly take the patient’s input in to consideration and require the patient to sign-off on the order, but they are a different sort of document that will be more in the family of CDA Documents that are structure like “orders”. We are making a document that is in the “Care Plan” family.
Given you inclination to think about the need to add some useful classification system for this full set of concepts we aim to describe, I would appreciate your thoughts on what I proposed below and how you see it working relative to the classifications you proposed below.
My goal is to make this as easy as possible for implementers – 3 basic entry patterns – that all can fall into a CDA Care Plan document structure that helps them process any type of care plan document if they take on learning how to process this type. Goals and Priority organizers that order Goal observations will all go into the Goal Section of the Care plan. Preferences and Preference Organizers that order treatment interventions will all go into the Interventions Section.
All the entries will be authored by the person.
This all fits with a larger vision/design I have been advancing the use of all types of C-CDA R2.0 Care Plan Documents.
5.Preparation questions – out of scope – but useful to think about.
6.Signature – Who has signed or notarized your directives.
Clinical statement modeling:witnesses are authenticators and the notary is the legal authenticator. Signature code is used to indicate the type of signing that was completed.