A New Way to PREPARE for Severe Illness and End of Life Care
January 16, 2013
An innovative new online resource guides patients through the decision making process regarding how they’d want their wishes followed if illness or failing health affected their ability to speak for themselves. PREPARE (www.prepareforyourcare.org) was launched at the beginning of January by researchers at University of California San Francisco (UCSF), led by Rebecca Sudore, MD, SFVA palliative medicine physician and geriatrician as well as associate professor in residence at UCSF School of Medicine.
“In medical school I became very interested in health education,” Dr. Sudore told Parentgiving, “I was working at a homeless shelter where we were providing health based literature, but people didn’t have the skills to read the literature that we were providing.”
Inspired, Sudore wrote a California Advanced Directive during her geriatrics fellow, still available on the Institute for Healthcare Advancement Web site in six different languages--all written at a 5th grade level.
PREPARE is written at the same, but takes user education and empowerment to new heights utilizing videos, voice overs and large text of all scripts that are intuitive and clear, never condescending. The program walks you beyond the legaleze of an Advanced Directive to the heart and soul of what matters most to us when big decisions need to be made.
“What I’ve found in my own research is that there are specific things that need to be brought up in conversation,” explained Sudore. There were five topics that people were most concerned with, so she came up with five questions to ask oneself before making these life and death decisions regarding medical care:
1. What is most important in life? Friends? Family? Religion?
2. What experiences have you had with serious illness or death?
3. Can you imagine health experiences worse than death?
4. Is it most important to you to:
Live as long as possible, even with pain or disability?
Or, try treatments for a period of time, but stop if you are suffering?
Or, focus on quality of life and comfort, even if your life is shorter?
5. Have you changed your mind about what matters most in your life over time?
Via a series of videos showing concise examples of conversations with loved ones, individuals with themselves and daunting talks with medical providers, users are provided with useful guidance. Whether appointing several medical decision makers or not ready to pick even one, these relatable videos ease the mind and show situations where awkward topics, i.e. explaining why you’ve chosen one person over the rest of your big family, aid in tackling something as difficult to talk about as end of life planning. The difficulty of even bringing up these decisions and conversations is the greatest stumbling block Sudore and researchers are hoping to diminish.
“People need to have the information, but if you decrease the deactivation energy level, just make it easy for people so that they can even sit down with their medical decision maker and not have to say anything at all,” users are much more likely to actually take action and choose a decision maker, sign the free printable forms and get copies to their doctors, close friends and family.
In preliminary studies, seniors in low income situations, many of whom had never used a computer before, rated the program at nine out of 10 in ease of use. This reporter went through the five steps herself, and is now ready to talk to her doctor about what matters most should she become too sick to make decisions. Regardless of age and health, PREPARE is a tool for the health and wellbeing of all: a brilliant gem in the rough of EoL planning.