Problem Statement: Millions of older adults and their families will face complex medical decisions over the course of advanced illness, yet most are unprepared. Lack of preparation can lead to uninformed choices, receipt of care inconsistent with personal goals, and lack of empowerment during clinical encounters, especially for individuals with limited health literacy. Conventional preparation, called advance care planning (ACP), has typically focused on having patients pre-specify preferences for life prolonging procedures, such as mechanical ventilation, and to document these choices in an advance directive (AD). Yet, ADs are hard to understand and are often not completed, especially by minorities. And, even when ADs are completed, they often fail to affect the care received at the end-of-life, decrease the stress of decision making, or result in what most experts agree is the most important component of ACP – ongoing conversations between patients, their loved ones (i.e., surrogates decision makers), and clinicians. To overcome these limitations and unmet needs, we developed a new paradigm of ACP that focuses instead on preparing diverse, older adults and their loved ones to communicate their evolving wishes over time and to make real-time, complex medical decisions over the course of chronic and advanced illness.
Innovation: To operationalize this NEW ACP paradigm, we developed the PREPARE website. PREPARE (prepareforyourcare.org) was created in partnership with English and Spanish-speaking older patients, their families and surrogate decision makers, and community stakeholders through extensive focus groups and cognitive interviews. PREPARE is based on behavioral change theoryand, unlike other ACP programs, includes preparation for decision making and videos on how to communicate with surrogates and clinicians (e.g., how to ask someone to be a surrogate and how to communicate one’s evolving goals).PREPARE is interactive and tailored to peoples’ preferences. Rather than just focus on CPR or mechanical ventilation, PREPARE preferences include detailed information about who, when, and how a surrogate should make decisions; what gives life meaning; desired involvement in medical decisions; and communication preferences. These preferences, and an action plan to complete ACP, are provided in a printed “Summary of My Wishes” for the patient, family, and clinician. PREPARE is written at a 5th grade reading level, can be completed outside of a clinic visit, and has been shown in research studies to be easy-to-use by diverse, older adults. It is has been translated into Spanish and is currently being translated into Mandarin and Cantonese.
Potential Impact: Preliminary studies show that PREPARE helps people engage in ACP without the use of a facilitator; therefore, it can be completed outside of the clinical environment. In addition, because the website prepares patients and their loved ones for medical decisions and discussions, it may save clinicians’ time as well as help facilitate new (January 2016) CMS reimbursement for ACP. PREPARE has also shown promise to improve patient and family satisfaction with clinician communication – an emerging quality metric important to UCSF. And finally, PREPARE may also decrease health disparities in ACP by providing easy-to-understand and accessible ACP information to a diverse audience of English and Spanish-speaking adults.
Current Impact: PREPARE was launched for free to the public and since then has been viewed by over 60,000 unique users with over a million page hits in over 115 countries. UCSF also has several licensing agreements with other academic institutions for research and clinical entities for use in ACP programs. Dr. Sudore has also been awarded a VA IIR grant, an NIA R01, and a PCORI grant to test the efficacy of PREPARE in 3 large randomized trials in diverse, disenfranchised English and Spanish speaking populations.
Future goals: Additional funding for 2 main efforts would greatly enhance the functionality and the reach of the PREPARE website for UCSF patients, as well as patients in Californian and nationally. First, Dr. Sudore designed and tested an easy-to-read advance directive (http://www.iha4health.org/our-services/advance-directive). Additional funds would allow the integration of this directive into PREPARE. This directive combined with the PREPARE values summary will further ensure that the patients’ wishes are honored and make it easier to meet CMS reimbursement standards for ACP. Second, we have started translating the PREPARE text into Chinese and are seeking funding to update the audio and videos into Mandarin and Cantonese.
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