Oregon POLST registry Secures 18,000 forms

Data is at 5 months post-launch

A registry that serves as a collection point for Physician Orders for Life-Sustaining Treatment — known as POLST forms — has collected forms from about 18,000 people in Oregon since the registry went live Dec. 3, 2009, according to Susan Tolle, MD, director of the Center for Ethics in Health Care at Oregon Health & Science University (OHSU) in Portland, OR, and who leads registry educational efforts.

According to OHSU, the POLST Program was established in 1990 to help ensure people with serious illness have their wishes for medical treatment met if they are incapacitated. The POLST form, which is pink, must be completed by a physician, nurse practitioner, or physician assistant, based on patient treatment preference.

An OHSU news release explains that the form provides specific medical instructions to health care professionals at a time when the patient cannot speak for himself or herself. However, in times of crisis — in emergency situations — that information was not immediately available to emergency medical personnel.

The new registry, which is voluntary, changes that and makes medical treatment preferences available to emergency personnel on a 24/7 basis. Also, the registry, which OHSU says is the first of its kind in the nation, was established through the OHSU Department of Emergency Medicine under the auspices of the new Oregon Health Authority, which was established through Oregon's health reform bill passed by the legislature in June of last year.

"Other people have created freestanding advance directive programs, and they tend not to have the kind of impact people would hope to be used at nearly the rate our registry is being used," Tolle tells Medical Ethics Advisor. "They tend to need a PIN number, which is something only the individual has, to get in and access the data," and there is no search function using other demographic information.

For example, if EMTs in Oregon don't have the identification number for a patient, they can search for their POLST form using other demographic information, which can be an address or a primary care provider. "That process takes on average 1 minute and 7 seconds to provide this information as a computer match — to collect the parts, where we're not just scanning the document in," Tolle notes.

While many other registries are available in the United States, Tolle suggests they work "more like a safety deposit box." One aspect of the program that has worked well is that, like the color of the form itself, people who register are given a bright pink business-sized card with a magnet, which they can then keep with them at all times, if they choose.

"They're not inside health care," she says. "Our registry lives inside the statewide trauma system, so if you wanted to transfer a patient who was a Level 1 trauma patient, you would call [a particular] phone number as an EMT, and it's a number you already know."

This most recent effort is actually an expansion of an existing 24/7 registry that allows for patient form searches if the ID number for that patient's form is not readily available. It cost about $150,000 to design the computer programming.

Tolle notes that the type of emergency medical system a state has would influence how it set up the registry, so Oregon's model might have to be adapted in certain states, because every state is different.

"California is by county; we are statewide; all of those things would matter in setting up [a registry]," she says. "But people start talking about a national registry; that won't work. This is something that needs to be on the speed dial of your EMT, and it's not something that's outside the health care system."

A philanthropic model

The OHSU ethics center uses a philanthropic model "with every effort to contain conflict of interest," Tolle says.

"Everything that the ethics center does, and all of my time, are completely supported by private philanthropy, so I fund-raise to be able to do this, is the bottom line," she says. "And we do not accept gifts from [health care] industry [sources] and never have."

For example, Tolle has an endowed chair, to which 330 people donated money to fund, she says, even though the position bears an individual's name.

"So, our ethics center represents the people of our region, mostly Oregon — a little bit southwest Washington," she says. "And we are happy to give away what we create and learn, and we are, of course, rolling out the POLST program all over the country now."

"I would argue the Oregon public is more sophisticated about end-of-life options than the public in any other state," Tolle notes. "We are a part of that; we are not the whole reason. But once you reach a certain tipping point, POLST, advance care planning, [and] hospice become the norm."

She also notes that by the way everything is structured — "we will fight for you either way. You want everything at the end of life; you want some things and not others [for care]; you want more extensive limits; if you understand and are informed about what your choices are, we will fight that you have what you want."


Susan Tolle, MD, Director of the Center for Ethics in Health Care at Oregon Health & Science University in Portland, OR. To learn more about the Oregon POLST Program and the new POLST registry, visit www.polst.org.