Adapted from UCLA Health Newsroom article

A UCLA-led team, that includes IDRE Executive Committee member Douglas Bell, has received a five-year, $8.4 million award from the Patient-Centered Outcomes Research Institute to develop effective approaches to improve advance care planning for seriously ill patients treated in primary care clinics.

The award, one of seven granted nationally by the research institute, an independent nonprofit, nongovernmental organization, is intended to fund a research project that addresses the needs of both patients and caregivers.

UCLA, in collaboration with UC San Francisco and UC Irvine, will compare three planning approaches that could be used in primary care clinics among people with advanced cancer, heart failure and lung disease, said Dr. Neil Wenger, the project’s principal investigator. The aim is to determine which approach, or approaches, lead the patient to complete an advance directive, a legal document that describes the patient’s wishes for end-of-life care.

Advance care planning is a process involving patients, families and clinicians to foster understanding about illness and prognosis. Such planning can help clarify treatment preferences, identify a surrogate and develop goals for care during a serious illness and near the end of life.

One alternative approach to advance care planning that will be tested grew out of the UCLA Advance Care Planning and Services initiative led by Wenger and Dr. Anne Walling, co-leader of the Patient-Centered Outcomes Research project, working closely with Dr. Sam Skootsky, chief medical officer of the UCLA Faculty Practice Group and Medical Group.

Patients, family members and clinicians will guide the project in multiple clinics in California. A study advisory committee comprising state and national leaders in advance care planning and palliative care will also play a role, Walling said.

“Interventions to promote advance care planning are particularly important at academic health systems such as UCLA, UCSF and UC Irvine, where this trial will be conducted,” said Wenger, professor of medicine in the division of general internal medicine and health services research at the David Geffen School of Medicine at UCLA and director of the UCLA Health Ethics Center. “Patients at these locations expect to receive the most advanced medical treatments. It is important to target the clinical expertise and advanced technologies to achieve the specific goals of the individual patient.”

To that end, the project will employ specially developed advance care planning materials and a web-based advance care planning tool called “Prepare for Your Care” created by Dr. Rebecca Sudore, professor of medicine at UC San Francisco and study co-principal investigator.

Primary care clinics at the three university locations will test three strategies in English or Spanish:

• Patients are introduced to the advance directive
• Patients are given the advance directive and are instructed to use the Prepare for Your Care interactive website to describe their wishes
• Patients are guided by specially trained coordinators to engage with the advance directive and interactive website.

Patient-Centered Outcomes Research Institute funded the UCLA study as part of the organization’s focus on community-based palliative care delivery.

“UCLA’s project was selected for funding for its potential to fill an important gap in our understanding of palliative care delivery and to give people vital information to help them weigh the effectiveness of their care options,” said Dr. Joe Selby, the institute’s executive director.

Other project investigators include UCLA’s Dr. Douglas Bell, Ron Hays and Chi-Hong Tseng; Dr. Christine Ritchie and Dr. Rebecca Sudore of UC San Francisco; and Dr. Lisa Gibbs and Dr. Maryam Rahimi at UC Irvine. The Coalition for Compassionate Care of California, a partnership of leaders from health care, government, consumer groups and the public, will collaborate with the UC sites.

Patient-Centered Outcomes Research Institute was authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions.