End-of-life decision making is a delicate and often avoided undertaking, this area of health literacy requires accessible information, open communication, as well as advocacy that supports self-determination as a basic right, throughout and at the end of life. Health literacy surveys reveal only 12% of adults have skills necessary to maintain health, prevent disease, and use the U.S. health care system. We know Information in the health-care system is challenging especially in stressful circumstances that includes end of life decision-making.
The “Thinking Ahead: Conversations Across California” project sought to gain insight into user-centered written and oral communication that would be functional for a wide range of consumers. BRC identified key audiences of end users for “focused learning” groups from five California cities. Participants included assisted living providers and residents, users and providers of in-home supports, users and providers of hospice and health care services, family members, and disability/senior advocates. Participants provided insight about end-of-life care decision making and advance planning tools that facilitate planning, and recommendations for easy to understand approaches and materials.
What became clear is that people worried about “not having choices,” or being denied the basic human right to decision making, even at the end. There appeared the disintegration of self-determination with confusion about end-of-life treatments, authority of advance planning documents, and personal preferences being ignored. There is no guarantee promises will be kept unless individuals themselves are equipped with a resourcefulness that enables loved ones, friends and medical providers to follow accordingly.
Board Resource Center’s work focuses on inclusion of end users as both project focus group participants and primary advisers so outcomes are meaningful. Stakeholders were included in all phases of the project. The final video report will follow in September 2015.