Individuals with serious illness work with their clinicians to receive the medical treatments that will most likely achieve their goals. Medical treatment often is burdensome to patients and families, which makes it critical that patients are fully informed about treatment options and likely outcomes, even including what might be expected if treatments don’t work. Yet, advance care planning (ACP)—the process of discussion of end-of-life care, clarification of values and goals, and translating preferences into documents—remains uncommon, especially among disenfranchised people. As a result, seriously ill patients too often receive treatments at the end of life inconsistent with their values and goals. When this happens, patients and caregivers are less satisfied and health resources serve patients less well.
Small studies show that ACP interventions with patients and clinicians can lead to better linkage of patient wishes with medical treatments among diverse patient groups. However, these interventions have not been incorporated into busy clinic visits for patients with advanced illness across a health system. The project team proposes to compare three practical approaches to ACP for patients with cancer, heart, and lung disease at 27 clinics at three University of California (UC) sites (UCLA, UCSF, and UCI). The project aligns with a statewide initiative to improve care for patients with advanced illness and is encouraged by the UC Office of the President, which will convene meetings to coordinate the project and has pledged to disseminate the successful intervention across UC Health.
Primary care clinics at each site will be randomized to implement one of three real-world ACP interventions in English or Spanish: (1) patients receive an easy-to-read advance directive (AD) developed with input from patients, (2) patients receive the AD and are encouraged to use an interactive website proven to prepare people for medical decision making, or (3) patients receive the AD, are encouraged to use the PREPARE website and are activated to engage in ACP by specially trained care coordinators who also prompt trained physicians to discuss ACP with energized patients. ACP and treatment outcomes will be collected for all patients with advanced illness in participating clinics using a PCORI-supported data collector called pSCANNER. A subset of 900 patients and their caregivers will be surveyed up to three times about their experience with ACP and outcomes, including interviewing caregivers after a patient’s death.
The research team has successfully evaluated complex interventions for seriously ill patients and partnered with patients and caregivers to improve ACP. With the help of local patient, caregiver, and clinician advisory groups and state and national organizations, this project will compare the effect of these interventions after one year and as long as 30 months to identify how to best carry out ACP in busy clinics across a system, and then disseminate this practical intervention.
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.