If you were in a hospital bed, severely brain damaged and unable to speak for yourself, would you want distraught family members to guess or, even worse, debate your end-of-life wishes?
Several state legislatures have created Web-based applications to help families avoid this situation by making advance directives accessible to physicians. Advance directives are a set of specific care instructions, pre-established by individuals to help hospital physicians and emergency-care responders honor patients' medical demands in case of incapacitation.
Such demands include artificial ventilation and nutrition, and in some cases organ donations. The most common of these directives are the living will and the durable power of attorney for health care, in which an individual designates a medical proxy.
Because these directives are often stored by lawyers and family physicians who observe regular business hours, they become virtually useless in the event of an after-hours incident. In other equally counterproductive cases, advance directives are simply kept at home, relegated to a shoebox.
Although the Terry Schiavo case is the freshest in many minds, similar high-profile cases in the mid- to late-1980s prompted private organizations to not only look for ways to educate people on the importance of advance directives, but also make them easily accessible to health-care providers. The Internet rapidly became the medium of implementation.
North Carolina, Arizona and Montana have since followed these initiatives and adapted the concept to their own legal systems. Washington state, the latest to undertake online advance directives project, will look to its predecessors in the public and private sectors for best practices.
What Would Washington Do?
On March 17, 2006, Washington Gov. Christine Gregoire signed HB 2342, requiring the state's Department of Health (DOH) to launch the state's first electronic registry for advance directives.
"We're currently reviewing the applications already in place in other states," said Jennifer Tebaldi, director of policy for Epidemiology, Health Statistics and Public Health Laboratory, a division of the DOH. "Some of them developed their own database, some of them contracted it out," she continued, adding that under the bill, which allotted the project $324,000 for fiscal 2007, Washington has both options.
The state also is discussing ways to address Web-related security issues, such as privacy and access. Tebaldi explained that the system will be password-protected to deny unauthorized access. The challenge, however, will be to allow hospital staff to access the directives in all situations.
"We're thinking about the doctor, nurses or any other health-care providers who need access," Tebaldi said. "How are they going to do that if they haven't been given the password by the persons themselves?"
Dr. Jim Shaw, medical director and staff ethicist at the Providence Center for Faith and Healing at Sacred Heart Medical Center in Spokane, Wash., said physicians regularly face situations in which patients are brought in unconscious, and their families forgot to bring or don't have their advance directives.
"If there's another way of getting them, such as online, in a quick and reliable fashion, I think it will be accepted as a step forward," Shaw said. "In those places, where physicians are not used to accessing electronic medical records, they'll probably look at this as a pie in the sky. It's going to require a lot of education and a lot of people siding for it to make it worthwhile for people to check."
Some health professionals worry about the extent of their liability if the system is unavailable, and should families, dissatisfied with doctors' treatment choices, attempt to sue. Shaw, however, said he wasn't too concerned with such issues.
"That's a question that I think people will be reassured about as they learn more about the program. The default position is always to treat the patients in a life-saving way, and when we don't have information, that's always what we're going to do."
Tebaldi said although the Legislature did not specify a statutory launch date for the Web site, the DOH hopes the system will be operational by spring 2007.
Small Town, Big Ideas
Many in the health field recognize Missoula, Mont., and its Choices Bank as pioneers of the advance directive movement. Choices Bank is a registry that lets people deposit advance directives and makes them available via a secure Web site.
was developed in 1992 by the St. Patrick Hospital and Health Sciences Center's Information Services Department. "It's been hugely successful," said Judy Gustafson, coordinator of Pain and Palliative Care Services at St. Patrick, adding that thanks to a strong push for community education, the registry now counts more than 5,000 directives.
Individuals can register by bringing their advance directives to any of 20 locations in west Montana. The bank accepts all directives as long as they conform to state law.
"In Montana, a directive is recognized as a legal document if it is witnessed by two individuals who aren't otherwise named in the document," Gustafson explained, adding that theoretically Choices Bank would accept a directive on a napkin as long as it respected signature requirements. Those who don't wish to go to these lengths can download a basic advance directive form -- the My Choices Form -- from the Choices Bank Web site.
Once received, the directive is scanned into a database, along with a deposit and release form, and the original document and signatures can be viewed online shortly thereafter.
"It takes maybe 5 minutes," said Gustafson of the scanning process, "then the original document is sent back to the individual depositing the directive along with the wallet card, and directions."
The wallet card bears a code physicians enter in the Web site to rapidly access an advance directive, and it is recommended that individuals keep the card with them at all times.
The deposit and release form addresses security concerns by offering two levels of privacy. At the standard level, Gustafson explained, advance directives are accessible via the Web site to anyone with a person's mother's maiden name, date of birth and Social Security number, or with the wallet card information. The higher privacy level allows only those with the wallet card information to access the directive.
Moreover, to allow access in case of a missing or damaged card, doctors and health-care providers of participating hospitals can log on to the database with a special permission code and match a patient with some pertinent information -- Social Security number, address, etc.
In addition, Gustafson said if an unauthorized person accessed the database -- which is encrypted by the same technology that banks use to maintain customer privacy -- he or she would not be able to make any changes. The latter can only be made by submitting a new directive, deposit and release form via the same channels as the original registration.
"The beauty of having an Internet site is if the person were traveling out of state and were in some kind of car accident, as long as they had their wallet card with them -- and say they're in California, but their residence is Montana -- the hospital in California could pull out that wallet card and have access to that advance directive," Gustafson said. She added that although the database was originally designed for Missoula residents, it has welcomed several out-of-state participants.
In light of the bank's positive results, other states have looked to Missoula when considering implementation of similar programs.
Vermont, for instance, recently signed legislation to launch an online registry, and directed its health department to explore best practices and funding options. The department conducted a survey among Choices Bank users and compiled the results in a January 2005 report.
The report indicated that 42 percent of the participants filed their first advance directives with the bank, and 97 percent of depositors were very to extremely satisfied with its services.
Inspired by the success of this private-sector effort, Montana launched the End-of-Life Registry Program on March 14, 2006. In accordance with the Montana Legislature, the state Department of Justice (DOJ) oversees maintenance of the statewide database.
Joan Eliel, program specialist for the Office of Consumer Protection and Victim Services, a division of the DOJ, said the experience is both rewarding and refreshing for her department, which usually deals with the criminal element. "People are very excited about it, just very positive and thankful that we have provided this service," Eliel said.
Within the first month, nearly 270 people registered with the program -- a relatively large number considering Montana's small population.
The End-of-Life Registry applies the same principles as Choices Bank, in terms of process, security measures, availability of online forms and open search possibilities; however, it adapted the concept statewide.
In addition to the Web site, representatives are available to answer questions 24 hours a day. "During the day, most of the time, those types of phone calls would come in to myself," said Eliel. "When I am not here, I have a backup person; and when we're gone for the evening, it goes to our 24-hour help desk."
The Legislature appropriated the DOJ $80,000 for the project. Half of the funding went to designing the Web site, a task assigned to Montana Interactive, the exclusive provider of Web portals for the state. As a result, the End-of-Life Registry is integrated in the state's home page
. The other half of the funding was allocated to community education and training doctors.
The registry, however, is facing unexpected expenses, Eliel explained. "[The registry] appeals more to probably an older population, and not everyone has a computer or can download the forms," she said. "So we are seeing an expense going out from the office, having to mail a lot of the forms. We're trying to determine what the costs of operation will be to continue this service," she said, adding that the DOJ was committed to the program and will go back to the Legislature for additional monies as needed.
In Arizona, the Advance Directive Registry was launched in May 2004 -- within a month of Gov. Janet Napolitano signing the bill mandating its creation. Two years later, the registry has more than 5,100 participants. The Office of the Secretary of State, responsible for the program, opted for a public-private partnership with the Hospice of the Valley to fund the state's database and avoid hard costs to taxpayers, according to Patricia Ohlerking, assistant director of Business Services within the Office of the Secretary of State.
"[The Hospice of the Valley is] helping to fund the position that's processing and doing the paperwork for this program," she said, adding that Hawaii-based vendor Healthcare Directive Partners manages the actual advance directive database and the scanning of directives for Arizona and several other states. According to the Arizona Secretary of State's Web site
, the program costs approximately $60,000 annually.
The Arizona database functions much like Montana's, except that it does not provide an open search option to physicians dealing with a missing or damaged wallet card. Ohlerking explained that to ensure privacy, the Office of the Secretary of State decided that advance directives should only be viewed online by those with the wallet card information.
Although Arizona and Montana offer the service to individuals and 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."