| Submitted By: Rachel Eager
/ New York eHealth Collaborative
|
| Data Element Information |
| Data Element Description |
A legal document that states a person’s wishes about receiving medical care if that person is no longer able to make medical decisions because of a serious illness or injury.
An advance directive may also give a person (such as a spouse, relative, or friend) the authority to make medical decisions for another person when that person can no longer make decisions.
There are different types of advance directives, including a living will, durable power of attorney (DPA) for healthcare, and do not resuscitate (DNR) orders.
In the United States, the laws for advance directives may be different for each state, and each state may allow only certain types of advance directives.
Other forms of advanced directives include medical orders for life-sustaining treatment (MOLST).
1. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/advance-directive |
| Use Case Description(s) |
| Use Case Description |
An advance directive is only used when a person is in danger of dying and needs certain emergency or special measures to keep a person alive but the person is unable to make these decisions themselves. (2). Currently this may be sent as a PDF or faxed to a hospital or palliative care center from a designated caregiver or other personnel. However this may be burdensome and cause more costly steps to the care process rather than having the directive located within a data field in the EMR.
2. https://www.nia.nih.gov/health/advance-care-planning-health-care-directives#:~:text=Always%20remember%3A%20an%20advance%20directive,wishes%20about%20medical%20treatment%20known. |
| Estimate the breadth of applicability of the use case(s) for this data element
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This is a level 1 element since most people may have an advance directive but it may not be used in a healthcare setting unless the patent is in danger of dying and unable to make this decision for themselves. |
| Use Case Description |
A second use case is sending advanced directives to the health information exchange and allowing this data to be exchangeable for better care coordination amongst the person’s care team. In emergency cases where a patient may not expect to need an advanced directive this allows the hospital or other care providers to easily access this through a portal or through bi-directional exchange into their EMR. This would allow for the patient’s wishes to be met in an emergency. |
| Estimate the breadth of applicability of the use case(s) for this data element
|
This use case could pertain to any patient that experiences an emergency situation and their advanced directive is needed to be accessed. The exchange of this data elements would mainly be needed between a primary care and a hospital in cases such as this one. |
| Healthcare Aims |
- Improving patient experience of care (quality and/or satisfaction)
- Reducing the cost of care
- Improving provider experience of care
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| Maturity of Use and Technical Specifications for Data Element |
| Applicable Standard(s) |
LOINC
https://loinc.org/42348-3/
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| Additional Specifications |
https://build.fhir.org/ig/HL7/cda-ccda-2.2/StructureDefinition-2.16.840.1.113883.10.20.22.2.21.html |
| Current Use |
In limited use in production environments |
| Supporting Artifacts |
Advanced directives are in limited production use across the Statewide Health Information Network for New York. In one Qualified Entity, Hixny, there is a dedicated field that allows providers to note the existence and content of directives. HEALTHeLINK also has a dedicated tab to show whether the document exists and when it was created but currently does not display the content of the advanced directive. HEALTHeLINK is looking for innovative ways to receive these documents and make them available on demand in applicable settings and situations for better, real time care. Other health information exchanges are also integrating advance directives into their networks. Arizona provides this information to end-of-life care teams across the state and Quality Health Network Health Information Exchange is providing this information to hospice teams participating in the network. Therefore this element is currently being used in a limited capacity to better exchange a patient’s wishes.
https://hixny.org/pulling-the-pieces-together/ https://ehrintelligence.com/news/az-hie-integrates-advance-directives-to-inform-clinical-decision-making https://qualityhealthnetwork.org/hie-improves-access-to-hospice-care-advance-directives/
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| Extent of exchange
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4 |
| Supporting Artifacts |
Although the exact number of outside entities receiving this data is unknown. Advanced directives are important to be exchanged throughout the healthcare system for those experiencing emergencies or a serious illness. Potential outside entities include hospitals, skilled nursing facilities, primary care offices, palliative care and hospice. Currently health information exchange networks are sending this data to providers involved in a person’s end-of-life care and hospice providers.
https://ehrintelligence.com/news/az-hie-integrates-advance-directives-to-inform-clinical-decision-making https://qualityhealthnetwork.org/hie-improves-access-to-hospice-care-advance-directives/
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| Potential Challenges |
| Restrictions on Standardization (e.g. proprietary code) |
None |
| Restrictions on Use (e.g. licensing, user fees) |
None |
| Privacy and Security Concerns |
An advanced directive is very sensitive patient information that should be treated as such. It is important patient information that should be protected and has important legal implications in a person’s end of life care. |
| Estimate of Overall Burden |
Since advanced directives tend to be a paper document and only occasionally coded in LOINC, this may be difficult for some of this data to be transferred to an EMR. In addition it would be important for a primary care provider or other care team member to properly record this data for others to be able to access it. This may be an extra process for these providers but the overall impact and having this data on hand in emergency situations can not only help to adhere to the patient’s wishes but also save providers from doing costly tests and unnecessary procedures. |
Submitted by Janice on
Advance Directive as an observation?
We question whether the Observations data group is the correct location for Advance Directive data. We believe it may be more correctly grouped with patient preferences under Goals and Preferences or in its own category (with an eye toward expanding the data in the future to capture specific elements as independent structured data)