A project involving nursing homes from across upstate New York will seek to establish new standards and strengthen the quality of end-of-life care. The $1.9 million project is one of the first awards from the federal Patient-Centered Outcomes Research Institute (PCORI) and the only such project in New York State.
As the US population ages, a significant and growing proportion of deaths will occur in nursing homes. It is estimated that by 2020, 40 percent of all deaths in America will occur in these settings.
“While nursing homes are increasingly becoming a place where people die, there is much evidence to suggest that these institutions are ill-prepared to provide high quality palliative and end-of-life care to their residents” said Helena Temkin-Greener, Ph.D., M.S., an associate professor in the University of Rochester Medical Center’s (URMC) Department of Public Health Sciences and principal investigator of the study.
Temkin-Greener will lead a team of ten researchers and clinicians, working with 30 area nursing homes, to develop palliative care guidelines and to test their effectiveness.
The nursing homes will be divided into two groups. One will serve as a control, meaning that the researchers will monitor performance but not intervene in its operations. The researchers will work with the other group to first establish a set of procedures and protocols for palliative care – there are currently no guidelines for palliative and end-of-life care specifically designed for nursing homes. The researchers will then work closely with the homes’ staff to train them to recognize and effectively treat symptoms requiring palliative care.
A critical component of this training is the creation of dedicated palliative care teams. Temkin-Greener and her colleagues will develop team-based models for nursing home staff, using models already employed in acute care settings such as intensive care units and in other fields such as the military. These teams will focus on effective communication and decision-making.
The researchers will compare outcomes for both sets of nursing homes, looking at information such as pain management, shortness of breath, and hospitalizations. They will also study how nursing homes may have changed the way they provide care.
“We know that teams produce better health care outcomes,” said Temkin-Greener. “The goal of this project is to combine palliative care standards with new models of organization and communication to enable nursing home staff to provide the best quality of care to their residents.”
In addition to Temkin-Greener, the project team also includes: Timothy Quill, Xueya Cai, Thomas Caprio, Sally Norton, Tobie Olsan, and Craig Sellers, Sue Ladwig, and Marcy Miceli all with URMC, as well as Dana Mukamel with the University of California, Irvine, and William Spector from the Agency for Healthcare Research and Quality.
PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund research that will provide patients, caregivers, and clinicians with the evidence-based information needed to make better-informed health care decisions. The end-of-life nursing home project was one of 25 projects to receive funding from PCORI out of more than 500 applications.