Early experience with digital advance care planning and directives, a novel consumer-driven program

Barriers to traditional advance care planning (ACP) and advance directive (AD) creation have limited the promise of ACP/AD for individuals and families, the healthcare team, and society. Our objectives were to determine the results of a digital ACP/AD through which consumers create, store, locate, and retrieve their ACP/AD at no charge and with minimal physician involvement, and the ACP/AD can be integrated into the electronic health record. The authors chose 900 users of MyDirectives, a digital ACP/AD tool, to achieve proportional representation of all 50 states by population size and then reviewed their responses. The 900 participants had an average age of 50.8 years (SD = 16.6); 84% of the men and 91% of the women were in self-reported good health when signing their ADs. Among the respondents, 94% wanted their physicians to consult a supportive and palliative care team if they were seriously ill; nearly 85% preferred cessation of life-sustaining treatments during their final days; 76% preferred to spend their final days at home or in a hospice; and 70% would accept attempted cardiopulmonary resuscitation in limited circumstances. Most respondents wanted an autopsy under certain conditions, and 62% wished to donate their organs. In conclusion, analysis of early experience with this ACP/AD platform demonstrates that individuals of different ages and conditions can engage in an interrogatory process about values, develop ADs that are more nuanced than traditional paper-based ADs in reflecting those values, and easily make changes to their ADs. Online ADs have the potential to remove barriers to ACP/AD and thus further improve patient-centered end-of-life care.