Why America Still Can't Honor End-of-Life Wishes: Closing the POLST Gap

By Forrest White

The problem isn’t whether POLST orders exist. It is whether clinicians and first responders can find them when decisions have to be made.

A few years ago, my father was living in an assisted living facility with dementia and end-stage cancer. We made sure he had an advance directive in place and that the people closest to him understood what it said.

That experience left me thinking about something a lot of people eventually grapple with: Even when wishes are documented, can the people making decisions in the moment actually find them?

Physician Orders for Life-Sustaining Treatment (POLST) programs were created to help bridge that gap. Unlike an advance directive, which expresses a person's preferences, a POLST translates those preferences into medical orders that must be followed by clinicians and EMS.

Most states have a POLST or a similar program operating under a different name. But a POLST form matters only if someone can find it the moment a clinician has to act. Too often, the order exists but not at the bedside, and the patient receives treatment that they explicitly declined and that contradicts the physician’s written order.

It's not that no one has thought about this: The technology to move data between systems already exists. What states haven't yet settled is how POLST itself gets captured and standardized in the first place. Until that's consistent, no registry or interoperability framework can fully solve the problem downstream.

The Gap Between Documentation and Action

By 2018, the Office of the National Coordinator for Health Information Technology had already documented the problem in detail, profiling how California, New York, Oregon, and West Virginia were each building POLST registries differently (e.g., web portals, direct EHR integration, fax-based intake) with no common standard between them. At the time, only two states had registries mature enough to be used at scale; two dozen more were still building theirs.

Nearly a decade later, states are still working through many of the same challenges. How information is submitted, exchanged, updated, and retrieved continues to vary across systems and care settings.

Why Timely Access Remains Elusive

An EMS crew responds to an emergency call. The patient has a POLST. But can it be located quickly enough to inform treatment decisions? Too often, the answer is “no.” 

This isn’t a “POLST problem.” It's the same information-sharing problem that shows whenever information must move between people and organizations—data trapped in an incompatible system is just as easy to lose as a form carried by hand from one facility to the next. 

Before anyone can retrieve a POLST, they must know what they're retrieving. POLST might exist as a scanned PDF, a structured machine-readable file, or something else entirely. So, if a patient sees three different specialists, the same POLST information may be captured, stored, or represented differently in each system. Potentially, all versions could be inaccessible at the point of care.

Once the POLST is captured, there's no guarantee it can be exported, moved through a health information exchange, retrieved at the bedside, or pulled up by an EMS crew at the scene. Those issues determine whether a patient's wishes are available when someone needs to make a decision about care.

What Makes a Registry Effective?

A state or national registry is a means to an end, not the goal itself. Obtaining and storing a POLST form is relatively straightforward. The harder part is ensuring the information can be trusted and retrieved when decisions need to be made.

An effective POLST system makes information available through the systems clinicians already use. And the clinician needs to be confident that they are seeing current, accurate information. 

A POLST registry is only as useful as its ability to integrate with the national interoperability frameworks already in place. That takes more than the right technology; it takes funding that outlasts the initial build, and workflows that fit how clinicians and EMS work.

States have already learned this the hard way. A centralized platform may solve a technical problem, but without a long-term sustainability plan, it can disappear as quickly as it arrives.

The Next Phase: Closing the Gap

The registry is only part of the story. The harder work comes after the information is collected: keeping it current, making it exchangeable, and making sure it reaches whoever is deciding about care, whether that's a clinician, an EMS crew, or a hospital during a transfer.

If a patient has a POLST, the people caring for them should be able to find it.

That is a solvable problem. It just hasn't been solved yet. To get there, states should focus on:

• Treating discoverability as a patient-safety issue. A POLST cannot guide care if no one can find it.
• Supporting interoperability, not just storage. The goal is not another repository; it is usable information at the point of care.
• Building for every setting where decisions happen. That includes hospitals, EMS, long-term care, and community-based care.
• Designing around real workflows. Access must align with the way clinicians and first responders work.
• Planning for sustainability. A registry needs long-term funding; clear ownership; and current, trusted data.

Closing the POLST gap means moving beyond forms and registries alone to build a sustainable, interoperable system that makes a patient’s medical orders trusted, current, and immediately available wherever care decisions are made.