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State first to launch electronic advance directive registry

By Suzanne Higgins
West Virgina Public Broadcasting
January 12, 2012

West Virginia is about to be the first in the nation to implement a statewide electronic registry for advance directives.

The groundbreaking system is featured in the latest edition of the Journal of the American Medical Association.

Officials at the West Virginia Center for End of Life Care in Morgantown say the e-Directive Registry project that they have shepherded for 2 years will be online March 2.

Only New York has a similar system in the works.

This will allow West Virginians’ advance directives including Living Wills, medical powers of attorney, Do Not Resuscitate Orders, and Physicians Orders for Scope of Treatment, to be available online and accessible to treating health care providers according to project director Alvin Moss, MD.

“This will be especially helpful in an emergency,” said Moss. “If the family knows Mom completed a Living Will but doesn’t know where it is, they can go online and look up the information.”

“So it’s really going to improve our ability to respect patients’ treatment wishes.” he said.

Studies show that at least 25 percent of the time paperwork for properly executed advanced directives is not available when needed, according to Moss.

“We have a communications failure sometimes in our health care system,” he said. “The people in the nursing home clearly knew what the patient wanted but when the patient gets to the hospital that information often doesn’t go with the patient.”

“Now we’ll be able to close the loop on the system and ensure patients wherever they are in the health care system will have their wishes known.”

The West Virginia e-Directive Registry will be coordinated through the WV Health Information Network, the state’s electronic medical records system. Moss says it will be compliant with privacy laws and password-protected.

“So there’s actually a lot of security.” said Moss. “People don’t have to worry that their Living Will or medical power of attorney will be general knowledge.”

“It will be behind the same password protection that all other electronic health records are protected by.”

Moss says the state is a leader in embracing the advantages of advance directives. He says surveys the center has conducted over the years consistently reveal 75 percent of West Virginians say at the end of life they don’t want to be kept alive on machines and that they would prefer to die comfortably in their home, wishes expressed in their advance directives.

“I can tell you we’ve already received 5000 forms even though the registry wasn’t officially up and going yet. Many health care providers and a lot of PEIA members have sent us their forms to be sure they are on file and available when needed,” said Moss.

Advance directives can be obtained by going to the WV Center for End of Life Care’s website. Once completed, the advance directives must be returned to the center.

“For us to have the information on line, they need to send it to us.”

Contact the Center for End of Life Care by calling 877-209-8086.

Online data entry of directives will start next week.