Data Element

Information from the submission form

Obligation or Prohibition Instruction for Life Sustaining Treatment
The 2020 Interoperability Standards Advisory (ISA) includes the concept of “patient preference/consent” in the content and structure section. ( The proposed data element, Obligation or Prohibition Instruction for Life-Sustaining Treatment, is loosely related to both the data class of “patient instructions” and the data element of “care experience preference”. A patient preference regarding a treatment for which the patient has provided consent to perform (obligation) or not to perform (prohibition) is aligned with the notion of a Patient Instruction. Episodic patient instruction records a patient’s consent to have or not have a particular medical treatment under certain circumstances during an episode of care. These consents provide the patient’s care team with information needed to establish the patient’s plan of care. When a person is about to undergo a medical procedure where he or she will be sedated, or about to have an inpatient stay, or a stay at a nursing or rehab care facility, care providers may ask the patient to make episode-of-care-specific decisions about medical treatments he or she does or does not want should a circumstance arise when this choice would need to be taken into consideration. A patient may make these decisions for himself or herself, or if the patient cannot make these decisions, the surrogate decision-maker may decide. These consents are made in the present and apply to the current episode of care. They are instructions provided by the patient or a surrogate decision-maker. The patient makes these decisions by himself or herself and communicates them to the care team. There is no requirement for the patient to make decisions which are consistent with the goals, preferences, and priorities they may have previously documented in advance directives or their PACP, but it is possible their prior thoughts may influence their current choices. If the patient is unable to communicate, then a patients previously appointed healthcare agent or a surrogate decision-maker if a healthcare agent was not appointed may make these decisions on the patient’s behalf. Ideally, these decisions are informed by the values, beliefs, and quality of life priorities documented previously by the patient as advance directives or PACP. Episodic patient instructions are closely related to advance directives, in that they say, for this episode of care if x happens, then do y. Or, if x happens, do not do y. For this reason, episodic patient instructions are often recorded in the clinical record along with a person’s advance directives. However, episodic patient instructions are not advance directives because they represent actual treatment decisions not input to inform potential treatment decisions. A set of recognized obligation or prohibition instructions that a patient or his or her surrogate decision-maker may make is documented in the value set Obligation or Prohibition Instruction Type urn:oid:2.16.840.1.113883. This value set is openly available for reference in the National Library of Medicine’s Value Set Authority Center. It can be referenced using this url: •


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