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Registry aims to put terminally ill patients in control of treatment


The Delaware Health Information Network, a statewide health information exchange, is implementing an end-of-life registry that captures medical orders that describe the scope of treatment planned for a terminally ill person.

The goal is to help providers better understand patients’ wishes on how they want to die, and whether treatment should be continued—and under which circumstances—or whether treatment should be ceased. The registry was authorized by Delaware’s Legislature in 2016 and follows a trend in several other states of translating a patient’s wishes into a medical order.

While advanced directives can be created any time, medical orders are created for patients in the last year of their life, says Jan Lee, MD, CEO at the Delaware Health Information Network.

A medical order is different from a traditional advanced directive, which an individual can create at any time to specify the level of treatment to be given. An advanced directive is not a medical order, but it gives guidance to paramedics, emergency physicians and others on treatment wishes.

But executing a medical order or advanced directive can be complicated, Lee notes. Emergency personnel often are not aware of the possibility a patient may have an order or directive or believe that, in an emergency situation, they don’t have don’t have time to search for either. Sometimes a patient gets an intervention that was not wanted.

Further, published research shows that patients’ end-of-life wishes are accurately documented only 30 percent of the time, and about 25 percent of paper forms have errors that render the document unusable, according to Lee.

Still, knowing if there is a medical order and where it is, and if the patient is conscious and has a chance to change their mind about treatment options at the point of care, is critically important, and that’s why medical orders are needed, Lee emphasizes.

Consequently, the HIE considered three vendors for the medical orders registry, choosing Vynca, which specializes in advanced care planning and had the most robust software, Lee says. The product supports best practices for advanced care planning by giving providers completed documents easily accessible across provider settings as well as integration in the electronic health records of hospitals and physician practices.

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