Kerry Fehr-Snyder
The Arizona Republic
Jan. 16, 2004 12:00 AM
A bill introduced in the state Legislature would make Arizona one of the first states in the country to have a free computer registry for residents to file end-of-life directions for medical treatment.
The health care directives registry would be maintained by the Arizona secretary of state and be accessible to hospitals and health care workers treating patients' life-threatening conditions.
The registry could help solve disputes like those in the Terri Schiavo case in Florida, which has pitted the brain-damaged woman's parents against her estranged husband. Schiavo never documented what she wanted done medically if she was to become incapacitated. As a result, she has been kept alive in a "persistent vegetative state" since 1990, when her heart stopped, temporarily cutting off oxygen to her brain. The Florida courts, Legislature and Gov. Jeb Bush have all intervened in the battle over whether she should kept alive.
"We all know how important advance directives are in deciding our fate," said Arizona Secretary of State Jan Brewer, who called approval of the registry her top priority this legislative session.
Town hall idea
The idea of an electronic registry originated in May at the Arizona Town Hall
in Prescott. When it made its way to Brewer, she took the idea and ran.
"I'm very excited about it," she said.
Brewer is a former state legislator who helped win passage of a 1984 law involving living wills. Senior medical issues have always been important for her, she said, because her district included the Sun City area.
If approved by legislators, the electronic registry would post notarized documents, including health care powers of attorney, living wills and mental health powers of attorney, on the computer Web site. The resident would be asked to review the online record and confirm that the information was accurate.
Residents then would be issued a card to carry in their wallets with a file number and a password to the site where their directives were available.
Currently, residents with living wills, medical powers of attorney and other advance medical directives must carry the forms with them at all times or keep them at home where they can be accessed in a medical emergency.
Critics worry about the online registry's privacy and security and whether unauthorized individuals could get into the site to view or change someone's medical wishes online.
"Of course, that's what everyone's concerned about because it's a life-and-death issue," said Dr. Gillian Hamilton, medical director of Hospice of the Valley and co-director of Health Care Decisions, an 18-month-old program to encourage people to complete advance medical directives.
Web site safe
Brewer said that the secretary of state's Web site cannot be hacked into and
that residents' medical forms registered there would be kept confidential.
The bigger concerns, she said, are whether someone could sue the state for financial damages after a loved one's death and how the registry would be funded. But Brewer said her office has found a way around both issues, first by placing a disclaimer on the Web site that excuses the state of liability and by asking private organizations, such as the Arizona Medical Association and Hospice of the Valley, to fund the registry.
If approved, the registry "would be in the first wave and the first one that the private sector would be so involved in," Brewer said.
At least two other states and one city have electronic registries. North Carolina was the first, establishing its registry in May 2002. Hawaii also has a registry, which is run in conjunction with an insurance company. In addition, Missoula, Mont., has a registry.
North Carolina's registry charges residents $10 per recorded document. About 1,100 of the state's 8.3 million residents have registered their documents so far.
"I wouldn't say disappointing, but it's a challenge," North Carolina Secretary of State Elaine Marshall said of registration so far.
No static in N.C.
Marshall said her office has faced no opposition about the registry. She also
said no one has been able to breach the Web site, which can be accessed with
a file number and password over the Internet.
"We are very good at public records management, database management," she said, adding that the process of backing up the files on the registry is done differently than with other documents on its Web site.
In Arizona, the registry bill's sponsor, Rep. Deb Gullett, R-Phoenix, said she foresees little, if any, opposition. The legislation, House Bill 2172, has the support of "a broad array of stakeholders," from emergency medical technicians to doctors to lawyers, Gullett said.
"I'm happy to be the sponsor of it," she added.
For her part, Hospice of the Valley's Hamilton said she is extremely excited
about this bill, adding that her group has been working for six months to help
craft the measure.