health-care providers at no cost, North Carolina -- the first state to implement a registry in 2001 -- charges $10 per advance directive scanned into its database.
What Will the Future Hold?
Advance health-care planning has gained ground steadily in state legislatures. Approximately 30 years ago, California was the only state with end-of-life care laws; today all 50 states have variations of such laws. As the nation's population becomes more technologically savvy, the impact the Internet will have on the end-of-life care movement and related legislation is promising.
Many observers hope to see the formation of interstate partnerships and standardization of signature requirements as more states adopt electronic registries. For instance, as previously mentioned, Montana requires two witnesses, and Arizona only one, as long as he or she is not blood-related to the directive applicant. Other states require that the forms be notarized.
Future registries forgo the scanning process in favor of an all Web-based secure application, something both Washington and Arizona have expressed interest in, according to Tebaldi and Ohlerking. But policies will have to be modified to keep up with technological improvements and provide adequate funding.
Whether it's with actual Web-based registries or simply with the availability of information and forms online, technology already has eased the process of filing advance directives.
The National Hospice and Palliative Care Organization (NHPCO), a nonprofit membership organization dedicated to end-of-life care professionals and facilities, successfully incorporated technology into its mission.
Jon Keyserling, vice president of Public Policy and Counsel for the NHPCO, said its Web site received 2 million hits and facilitated the download of nearly 1 million advance directive forms in the past 13 to 15 months. Although the site saw a spike in activity while Schiavo was in the headlines, Keyserling said the interest remained deep and continuous. Caringinfo.org offers advance directive forms adapted to each state's laws, and must regularly update its record to reflect states' latest signature requirements. This could change, however, if certain federal initiatives are ratified.
"Advance care planning is almost entirely a creature of individual state laws," Keyserling said, adding that the federal government tends to defer to the state where family and personal laws are concerned. "There's one exception, however," he continued. "Senator [Bill] Nelson from Florida as well as Congressman [Sander] Levin from Michigan have introduced companion federal legislation that if enacted would do several things."
According to Keyserling, the legislation would allow interstate recognition of advance directives, fund a government study to gauge and improve the effectiveness and utilization of advance directives, and establish a national clearing-house for the availability of and information on advance directives.
"It's really trying to take advance directives and advance health-care planning to the next level," Keyserling said.
Regardless of the future of electronic advance directives in state and federal laws, Keyserling believes there is still a lot more work to be done -- largely at the cultural level.
"It's fair to say that America is a death-denying culture. Advance care planning is not something people discuss while watching TV or around the dinner table. It takes concerted efforts to think through your health-care choices and to try to plan ahead and make decisions."