This is part of a larger project to help people effectively utilize advance care planning for behavioral health care, as well as for end-of-life and general health care, in one holistic, legally enforceable document. Despite increased public awareness of end-of-life treatment issues, only 25-30% of adults have completed an advance directive to guide their treatment; among persons with serious mental illness, fewer than 10% have done so. Research shows: when people are offered non-directive assistance ("facilitation"), most complete an advance directive; people with serious mental illness produce effective advance directives with such assistance; and people with serious mental illness who complete an advance directive for behavioral health care experience increased stability and wellness in their lives, as well as reduced instances of coercive treatment during crises. The app will provide an easy-to-use platform that can significantly enhance the capacity to reach and assist people. It will include information and guidance (including a Q&A) and the ability to choose sections/topics for which a person wants to provide instructions. With the app, a person can seamlessly complete, sign (with witnesses), save and send an advance directive to others, all without the need for a printer, paper, scanner or other device.
Although there are websites with generic advance directive forms to fill out and print, and there are apps (e.g., the ABA's "My Health Care Wishes") where people can store their advance directives, this is the only app that enables a person to electronically complete, sign (with witnesses), save and send a tailored advance directive. By enabling all of these steps to be carried out seamlessly, using technology now preferred by many adults, this app can dramatically improve the willingness and capacity of individuals to complete their advance directives and distribute them to their agents, doctors and others. Last year, one of our team partners won the American Bar Association’s “Hackness to Justice” award for his prototype of a basic AD facilitation app based on Massachusetts law. Our project seeks to grow that innovation by developing and disseminating an even more comprehensive app that includes coverage of behavioral health care.
Although this project is Virginia-based, it aims to produce information and materials that can support other jurisdictions/organizations and encourage wider adoption of advance directives that address behavioral health care, as well as general and end-of-life care. Approximately 29 other states and the District of Columbia have laws that explicitly allow the inclusion of behavioral health care instructions in ADs. Our team looks forward to freely sharing our work and expertise with other interested jurisdictions so that they can benefit from the lessons we have learned and adopt whatever might help them to avoid “reinventing the wheel." One of our partners, from Duke University, is involved in operating the National Resource Center for Psychiatric Advance Directives. Although the app we develop will be specific to Virginia law, we will make every effort to configurie this app to enhance the ability of programs in other states to adapt it to their state.
The Virginia Advance Directives project is founded on the notion that ADs, which strengthen health care recipients’ voice in their care and bridge communication gaps between providers, must be implemented through multi-stakeholder collaboration. We are fortunate to have resources and support from a variety of organizations that have been invested in the project since its beginning, including the Virginia Department of Behavioral Health and Disability Services, UVA’s Institute of Law, Psychiatry, and Public Policy, the Virginia Organization of Consumers Advocating Leadership, the disAbility Law Center of Virginia, Duke University, and more. The app project welcomes a new collaborator, Mr. Bill Palin. We have secured funding for the core team of individuals on the project each year since its inception. The Scattergood Innovation award will provide the needed funds for initiating this new area of our work, and our existing resources will allow us to sustain the innovation in the future.
By its nature, the development of an application such as this will provide the groundwork for replicating the program in other states. Our group will carefully document our own process and decision making so that we can provide a framework to others for replicating the application design process in their own jurisdictions. Mr. Palin will be able to share his expertise in terms of programming, as well as in terms of what is required by other states. Similarly, our team includes many other professionals with expertise in ADs who look forward to consulting with other states who might be interested in parsing their own AD laws and practices. Our group also hopes to seek additional funding in the future, which would allow us to provide more in-depth consultation and application design services to other states/institutions/organizations without requiring them to drum up funding or expertise from within.
The number of downloads can be tracked to determine how many people appear to be using the application. A brief survey may also be built into the app, which will ask users to provide some feedback. We will also track the number of providers to whom we introduce the application, as we hope to encourage providers to direct health care recipients to the application. We also have the ability to seek expert review and feedback from legal and health care professionals due to our many working relationships. We will also seek to track the number of ADs that are uploaded to the Virginia Advance Directive registry. We plan to build into the app a function for uploading to the registry (as well as emailing the AD to providers and loved ones), which will help encourage the important step of sharing one’s AD.