A training program that helps nursing homes offer advance care planning support to residents with Alzheimer’s disease and their family members is expanding to more than 170 nursing homes across the country. After a successful pilot led by Regenstrief Institute and Indiana University researchers, the National Institute on Aging announced an expected award of $3 million for the next phase of research.
Regenstrief and Indiana University scientists Kathleen Unroe, M.D., MHA, and Susan Hickman, PhD, led a team in developing an intervention called the Advance Care Specialist Program. Regenstrief researcher Wanzhu Tu, PhD, is also a co-investigator on the project. The program specially trains members of the nursing facility staff to educate other employees and implement procedures to support advance care planning for people living in the facility. The research team worked collaboratively with leaders from three partner companies who own and run nursing facilities to create and refine this program.
Advance care planning involves discussions with patients and their families about goals, values and treatment preferences. For example, one patient might prefer to avoid transfers to the hospital to focus on comfort, whereas another may want all available interventions with the goal of extending life as long as possible. Once these preferences are discussed, they will be formalized in documents such as the POLST form that can help ensure future treatment is in line with their preferences.
“Every person living in a nursing home deserves to receive care consistent with their treatment preferences,” said Dr. Unroe, co-leader of the project and research scientist at Indiana University Center for Aging Research at Regenstrief Institute. “We can’t honor preferences if we don’t know what they are, if we don’t know where to access them, or if we don’t communicate them between providers. This project aims to bring consistency and quality to the process of advance care planning.”
Expanding the ACP specialist program
This second phase of the APPROACHES (Aligning Patient Preferences – a Role Offering Alzheimer’s patients, Caregivers, and Healthcare providers Education and Support) project, will randomly assign approximately 170 nursing facilities to either implement the program or continue with their normal procedure. A corporate implementation champion will oversee the roll-out and be the primary point of contact for the ACP specialist.
“We believe ACP is essential to ensuring care that is truly patient-centered,” said Dr. Hickman, co-leader of the project and director of the Center for Aging Research. “APPROACHES is specifically designed to provide nursing facilities with the tools necessary to support residents and families in these important conversations.”
The training modules for the ACP specialists are available online and integrated with the nursing facilities’ systems. The program is designed to be scalable.
“We are very excited about this trial because it engages these companies as true partners in both design and implementation of this program,” said Dr. Unroe.
The project is grant number 4R33AG057463-03.
Other members of the team include Susan Mitchell, M.D., a professor at Harvard University, Laura Hanson, M.D., a professor at the University of North Carolina, and Laramie Mack, a research coordinator at Regenstrief Institute.
About Regenstrief Institute
Founded in 1969 in Indianapolis, the Regenstrief Institute is a local, national and global leader dedicated to a world where better information empowers people to end disease and realize true health. The Regenstrief Institute, a key research partner to Indiana University, and its researchers are responsible for a growing number of major healthcare innovations and studies. Examples range from the development of global health information technology standards that enable the use and interoperability of electronic health records to improving patient-physician communications, to creating models of care that inform practice and improve the lives of patients around the globe.
Regenstrief Institute is celebrating 50 years of healthcare innovation. Sam Regenstrief, a successful entrepreneur from Connersville, Indiana, founded the institute with the goal of making healthcare more efficient and accessible for everyone. His vision continues to guide the institute’s research mission.
About Susan Hickman, PhD
In addition to leading the IU Center for Aging Research at Regenstrief Institute, Susan Hickman, PhD, is a professor at the Indiana University School of Nursing, a professor and Cornelius and Yvonne Pettinga Chair of Aging Research at the IU School of Medicine, and the co-director of the IUPUI Research in Palliative and End-of-Life Communicating and Training (RESPECT) Signature Center.
About Kathleen Unroe, M.D., MHA
In addition to being a research scientist in the IU Center for Aging Research at Regenstrief Institute, Kathleen Unroe, M.D., MPH, is an associate professor at the IU School of Medicine and a practicing geriatrician.