Research shows that preparation for medical decision-making that factors in patients’ values, preferences and health goals, also called advance care planning, leads to better care. Having a plan can be especially critical during a health crisis. Despite this benefit, however, about two-thirds of adults in the U.S. have not done advance care planning. Reasons include difficulty in understanding forms with complex legal language and limited clinician guidance. As a result, they and their families often face complicated choices without the preparation needed to make tough medical decisions.
To make the planning process less intimidating and more user-friendly, the University of California, San Francisco School of Medicine (UCSF), has developed a website: PREPARE For Your Care. The site is designed to take users through a brief, easy to understand five-step process that doesn’t rely on clinician input for someone to note their medical care preferences. After completing the process, patients have a unique, printable document they can share with their family and clinicians.
The results from patients’ use of the PREPARE website have been encouraging. A study by UCSF researchers published May 18, 2017, in JAMA Internal Medicine found that patients who used PREPARE in conjunction with an “easy-to-read” advance directive form had significantly higher levels of engagement in the planning process than those who used only the form. This included having more “discussions with family, friends and clinicians, and feeling more confident and ready to have these conversations,” according to a recent story from the UCSF News Center.
“These results have far-reaching implications for public health, demonstrating that we can support patients in planning for future medical care in very scalable ways,” said lead author Rebecca Sudore, M.D., professor of medicine in the Division of Geriatrics at UCSF and staff physician at the affiliated San Francisco VA Health Care System. “Advance care planning is much more than just a form; it is all about conversations and patients having a voice in their health care. What most excites us about this study is that our easy-to-use tools helped people engage in conversations about their medical wishes with their family, friends and clinicians. We want to break down barriers to advance care planning by providing resources people can use on their own. The goal is for people to be prepared for medical decision making and to feel empowered to speak up about who they are as a person and what is important to their health care.”
With support from the Moore Foundation, PREPARE is now building on its initial work with California’s advance directive and expanding to provide easy-to-read, culturally-appropriate, evidenced-based advance directives for all U.S. states. The foundation’s support for PREPARE is part of its overall mission to improve the experience and outcomes in patient care and is an important aspect of our work in serious illness care. For additional information, see our program overview.