Registry targets to put terminally ill persons in control of treatment

The Delaware Health Information Network, a statewide health information exchange (HIE), is executing an end-of-life registry that captures medical orders that describe the significance of treatment planned for a terminally ill persons.

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

While advanced directives can be developed any time, medical orders are created for terminally ill persons in the last year of their life, claims 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 isn’t a medical order, but it provides guidance to paramedics, emergency physicians and others on treatment wishes.

But implementing a medical order or advanced directive can be complex, Lee notes. Emergency personnel often aren’t aware of the possibility a sufferer 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.

Moreover, published research indicates 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 sufferer is conscious and has a chance to alter their mind about treatment options at the point of care, is critically important, and that is why medical orders are required, Lee emphasizes.

Consequently, the HIE considered 3 vendors for the medical orders registry, selecting 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.

Emergency personnel can use a smartphone to query the Medical Orders Registry to verify if a patient has an order, but first EMTs have to know about the registry, which just went live in early August, so an educational program is being developed.

Until the registry is mature and famous, although, the best way for individuals who are in the registry to ensure providers will have the information they require is to carry a paper copy of their wishes and have a copy in the home with another individual who knows where the copy is.


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