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?

People with serious illnesses, their families, and their healthcare providers often have to make decisions about tests and treatments in the last year or two of life. Patients who talk with healthcare providers about what is most important to them are more likely to get the care they want when their health worsens. Primary care practices, where many people get care even when they have serious conditions, don’t always have the training or the processes to help people talk about what they want, make plans, and adjust plans as they get sicker.

The research team wants to compare two ways for primary care practices to do advance care planning for people with serious illnesses. One way is for one primary care provider to talk to a patient, set goals, and make plans. The other way is for a primary care team to share the responsibility for advance care planning.

Who can this research help?

Primary care practices can use results from this study when considering how to best handle advance care planning for people with serious illnesses.   

What is the research team doing?

The research team is working with 42 primary care practices in the United States and Canada. At each one, doctors and other staff get training and support to help them use the Serious Illness Care Program, or SICP. SICP provides a structured way to talk with patients about their illness, their goals, and what is most important to them. SICP also helps practices identify patients to talk to and ways to record what patients want and share this with other providers.

The research team is dividing the practices into two groups by chance. At half of the practices, patients talk and make plans with their primary care provider. At the other clinics, the primary care team works with patients to plan for their care. In addition to doctors, the team may include care managers, nurses, social workers, or community health workers.

The clinics are enrolling more than 800 patients in the study. Patients and their families answer questions after their first advance care planning conversation, and again 6 and 12 months later. The research team is looking at whether patients got care that matches what is important to them. The team also wants to know how much time patients spent at home.  

Patients, families, and primary care practices are working with the research team to plan and carry out the study.

Research methods at a glance