PREPARE: an easy-to-use, online advance care planning tool

According to project leader Rebecca Sudore, associate professor at the University of California-San Francisco school of medicine, most people lack a framework to face complex medical decisions when they arise. She added that  “the healthcare establishment, admonish people to do advance care planning, by which we often mean to fill out advance directive forms focused on hypothetical scenarios and preferences for life-sustaining treatments such as CPR (cardiopulmonary resuscitation)”.

PREPARE was developed to fill  what is seen as fundamental content and functionality gaps of currently available tools, especially for older adults from culturally diverse backgrounds.

PREPARE is easy to use. It is written and presented in easy to understand language, with a voice-over of all text for individuals who have poor vision or difficulty reading, and closed-captioning of all video content for those who are hard of hearing. PREPARE also includes a short guide on how to use a computer. 

The tool aims to provide culturally balanced content as well as providing content for individuals who prefer family or group decision making, people who prefer to not be active participants in their own medical decision making, people who prefer aggressive treatments, and people who prefer comfort care.

The site guides users through a five step process:

• Choose a medical decision-maker. Many people will quickly name a spouse, child or best friend. However 10% to 15% have no one they feel comfortable naming – the site reassures users that they are not alone in this problem.
• Decide what matters most in life. Is living as long as possible the most important thing? Is comfort more important? Would you want to live if you couldn’t talk to people? Videos show how people might discuss these issues.
• Flexibility for your decision-maker? Do you want them to always do exactly what you said or would you want them to have flexibility in some situations?
• Tell others about your wishes. The list may include a decision-maker, doctors, family members and friends.
• Ask doctors the right questions. When medical choices arise, ask about risks, benefits and other options. Some people also want to ask how sick they are or how long they have to live.

Rebecca Sudore states: “I believe the tide is turning in America, and that people and their families are more open to talking about what is most important in life and for their medical care. They just need a road map.”