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

Area of Science:

• Gerontology
• Health Informatics
• Bioethics

Background:

• Traditional advance care planning (ACP) and advance directive (AD) creation face significant barriers.
• These limitations hinder the potential benefits of ACP/AD for patients, families, healthcare providers, and society.
• A digital platform offers a potential solution to streamline and improve the ACP/AD process.

Purpose of the Study:

• To evaluate the outcomes of a digital ACP/AD tool enabling free creation, storage, retrieval, and EHR integration.
• To assess user engagement and the nature of advance directives generated through a digital platform.
• To identify the potential of digital tools to overcome existing barriers in advance care planning.

Main Methods:

• A study involving 900 users of the MyDirectives digital ACP/AD tool was conducted.
• Participants were selected to ensure proportional representation from all 50 US states based on population.
• User responses and generated advance directives were reviewed to analyze the process and outcomes.

Main Results:

• The study population had an average age of 50.8 years, with most reporting good health.
• A high percentage of respondents desired palliative care consultation (94%), cessation of life-sustaining treatments (85%), and home/hospice care (76%).
• Significant proportions accepted CPR in limited circumstances (70%), desired autopsies (most), and wished to donate organs (62%).

Conclusions:

• Digital ACP/AD platforms facilitate nuanced value-based decision-making and easy modification of directives.
• Individuals of diverse ages and health statuses can effectively utilize these tools.
• Online ADs show promise in removing barriers to ACP/AD, thereby advancing patient-centered end-of-life care.