PCORI has identified planning and delivery of care for patients with advanced illness and their caregivers as an important research topic. Patients, clinicians, and others want to know: How can we identify care needs and address them effectively in real-life community settings? To address this issue, PCORI launched an initiative in 2016 on Community-Based Palliative Care Delivery for Adult Patients with Advanced Illnesses and their Caregivers. The initiative funded this research project.
This research project is in progress. PCORI will post the research findings on this page within 90 days after the results are final.
What is the research about?
Patients don’t always receive health care that matches their wishes at the end of life. Advance care planning, or ACP, is when patients discuss their goals for end-of-life care with their doctor and caregivers and write them down. ACP can help patients receive end-of-life care that fits their values and preferences. Advance directives are written statements that describe a patient’s wishes for care if they aren’t able to communicate. Filling out an advance directive is part of ACP.
In this study, the research team is looking at three ways to help patients create an advance directive. The team is comparing how well the approaches work to help patients get care that matches their values and goals.
Who can this research help?
Results may help clinics and others plan ways to improve ACP for patients.
What is the research team doing?
The research team is working with 27 clinics in California improve ACP for 4,000 patients with serious illness. The team is assigning clinics by chance to offer ACP in one of three ways:
- Patients receive an easy-to-read advance directive form to fill out.
- Patients receive the advance directive form, plus access to an interactive website called PREPARE. This website helps patients clarify values and goals for end-of-life care and complete the advance directive.
- Patients receive the advance directive form and access to PREPARE. A trained care coordinator helps patients use the website. They also help patients create an advance directive and prompt doctors to discuss ACP with patients.
The research team is looking at electronic medical records to see how many patients complete an advance directive. The team is also asking 900 of the patients, including both English- and Spanish-speaking patients with serious illness, to complete surveys at the beginning of the study and again 12 and 24 months later. Caregivers complete surveys if patients are unable to or if the patient dies during the study period. The survey asks patients and caregivers how happy they were with communication with their doctor, if their care matches their values and goals, and if they feel prepared for ACP. With caregivers, the team is also asking about feelings of regret, anxiety, and depression. Finally, the team is looking at medical records of patients who die to see what kind of treatments they had and what kind of services they used, and if those treatments and services matched patients’ goals.
In this study, patient, caregiver, and clinician advisory groups and state and national organizations are helping to decide how best to carry out ACP in clinics.