Discussion of eventualities in palliative care plan - terminology binding

fhielkema · June 19, 2026, 9:41am

Hi all,

I received a question from Astrid Swinkels, an external author, that I could use some help with:

We are searching for terminology bindings for a form (KindIZP form) to document individual palliative care plans for children. In this form we document the discussion of how to manage different possible future events (scenarios) and details regarding the discussion of the management of these possible future events (who discussed this with patient and parents and on which date).

An example of documentation might be: “ scenario 1: in case of slow deterioration defined as …. , the focus/goal is …. We agree to do x,y,z. In this situation it is important for child and parents that… ; In scenario 2: in case of sudden deterioration defined as …. , the focus/goal is …. We agree to do x,y,z. In this situation it is important for child and parents that…; etc.)

Does SNOMED contain a suitable terminology binding for this? Should we create a new concept, how would we name it and where would we place it? “Discussion of management of eventualities”? Other suggestions ?

mlambot · June 22, 2026, 8:11am

Hi,

In the dicsussion procedures there is already

223487003 |Discussion about options (procedure)|

223484005 |Discussion about treatment (procedure)|

223486007 |Discussion about preferences (procedure)| which has children

439112006 |Discussion about child health (procedure)|

707987008 |Discussion about last days of life (procedure)|

707737009 |Discussion about priorities for care (procedure)|

713662007 |Discussion about advance care planning (procedure)|

713079002 |Discussion about cardiopulmonary resuscitation (procedure)|

713080004 |Discussion about do not attempt cardiopulmonary resuscitation clinical decision (procedure)|

You might want to bind the general form to discussion about options or discussion of (advanced) care plan and then bind the sub-questions to a more specific concept if appropriate to make recovery of information easier. Like binding the specific question about preferred place of death to this concept or better, to the corresponding observable entity concept 395091006 |Preferred place of death (observable entity)| so you can record the question and answer as a FHIR observation with the observable entity as Code (question) and then the place as value (answer).

In observable entities there is 1186606009 |Patient request observable (observable entity)| that can be used to capture wishes of the patient as FHIR observations.

If you want to identify the document with your questions itself, as a record artefact, there is 773981004 |Palliative care plan (record artifact)|. I’m not sure it’s important to specify it’s a pediatric one, the age of the patient will tell you that if you make a query on your database. But if you need that specification, you can ask for a child (in both sense of the term) concept to be created.

Hope it helps. Normally if you document the procedure and the appointment for it you’ll go for the procedure concepts, if you record the questions asked and the answers given during this consultation, you use the observation-findings couples, if you want to identify the form itself where you encode the questions and answers, you go for record artifacts.

jsnyder · June 22, 2026, 1:07pm

Hi Feikje,

I have a little different take on binding the terminology based on the scenarios than Marie-Alexandra has, however, I am sure there are multiple different ways to handle this situation and still achieve the same end result.

This scenarios laid out seem to fit a Observable/Answer set layout fairly well. We just need to decide how much context the observable should carry and how much context the answer should carry.

Observation: Regime/Therapy in case of slow deterioration of (Observable Entity)
Answer List:

“X” (regime/therapy)
“Y” (regime/therapy)
“Z” (procedure)

In each scenario laid out, there is a treatment action taking place on the part of the patient that may include “Transport to emergency room”. I think the valid range of responses for the observable would be:

<< 71388002 |Procedure (procedure)| including << 243120004 |Regimes and therapies (regime/therapy)|
<< 129125009 |Procedure with explicit context (situation)|

I could be wrong, but I don’t think we would want to document these as “discussions”.

If it is done using an observable/response layout, then it is adaptable to the patient’s electronic health record patient portal so that the patient can log in and document exactly what action was taken by the patient based on the deterioration of . This information then becomes part of the medical record and could/should be available for Emergency Room and other providers to see what was done. (e.g. Administration of EpiPen)

This format could also lend itself to documentation of the patient’s plan of care.

More information about the exact implementation structure would need to be provided in order to best determine how the terminology should be employed to capture information in the optimal way.