People want to spend their last months with family, not in the hospital. Most people prefer to die at home, but most do not. This project proposes to test ways to align patient preferences in the last months of life care with the health care provided. The project team hopes to identify the best model for primary care practices to develop patient-centered plans for care in patients’ last months and at the end of life.
The Serious Illness Care Program (SICP) helps patients share their goals with healthcare providers and work together to create a healthcare plan that supports these goals. Primary care practices are a natural place for SICP to happen; however, there are many challenges, such as short office visits and lack of training for clinicians. As one family member asked: How can you have frank, honest, and in-depth conversations with your patients about end-of-life care and planning? Do you have someone on staff who specializes in this? This study will compare two models for SICP—one that focuses on the primary care clinician working with patients and families and the other a team-based model in which tasks are shared with other professionals such as care managers, social workers, and community health workers.
The primary care practices for this study are members of seven practice-based research networks in the United States and Canada. These networks collaborate on research conducted in real-world primary care offices where most people receive their care most of the time. A study in two countries will combine best models and strategies to share knowledge and produce study findings that will translate across multiple care settings in both the United States and Canada.
The practices will be assigned by chance to either the clinician-focused or team-based model, trained in SICP, and given materials to support conversations. Patients and families who do SICP in primary care will be asked to participate in a research study. Those who agree to participate will be surveyed soon after enrollment and again six months and one year later.
Patients, family members, and people who work in primary care will be involved in planning and conducting this study, connecting science to real life. This study was developed in response to the needs of patients—the desire to have a voice in what happens to them, including choice and control over what treatments and tests to have and where death occurs. The study will compare two important outcomes: 1) how much time patients spend at home and not in the hospital and 2) whether care provided matches patient goals. The project team wants to be sure that patients receive the care that they want in their last months and at the end of their lives.
*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.