Study on how Americans die could improve their end of life

A Rutgers Health analysis of millions of Medicare records has laid the groundwork for improving end-of-life care by showing that nearly all older Americans follow one of nine trajectories during their final three years of life .

“Identifying the paths that people actually take is a necessary prerequisite for identifying the factors that send different people on different paths and for designing interventions that send more people on the path that is best for them,” she said. said Olga Jarrín, Hunterdon Professor of Nursing Research at Rutgers and corresponding author of the study published in BMC Geriatrics.

The team extracted the last three years of clinical records from a random selection of 10% of the 2 million Medicare beneficiaries who died in 2018. The analysis of how much personal care each patient received and where where they received care revealed three main groups of care: home, skilled. home care and institutional care. Each cluster contains three distinct trajectories.

About 59% of patients fell into the “at-home” category, meaning they spent most of their last three years at home while friends and family helped them with whatever tasks they did not could not accomplish it themselves. These patients typically received little professional care, either at home or in nursing homes, until the last year of their lives.

Another 27% of patients fell into the “skilled home care” category, meaning that nurses and other trained professionals helped friends and family care for them in their homes for the majority of their lives. last three years.

The remaining 14% of patients were in the “institutional care” group and spent most of their last three years either in hospitals or (more commonly) nursing homes, receiving almost all necessary care from professionals. paid.

Researchers used a group-based trajectory modeling approach, assessing associations between care trajectories and sociodemographic and health-related parameters. Patients in the skilled home care and institutional care groups were more likely than patients in the home group to be female, black, enrolled in Medicaid, or with dementia. Intensive use of skilled home care was more common in Southern states, while intensive use of institutional care was more common in Midwestern states.

“Our study not only identifies different models of care, but also sheds light on the clinical and policy factors that dictate where and when patients receive care,” said Haiqun Lin, lead author of the study and professor of biostatistics also co -director. from the Center for Health Equity and Systems Research within the Rutgers School of Nursing. “Understanding these patterns is crucial for advance care planning and, ultimately, achieving the triple aim of improving care experiences, reducing care costs, and improving care quality.” »

The study is the first of many that the researchers plan to base on their analysis of Medicare data. Now that they have identified the trajectories that people actually follow in their later years of life, they will look for the key factors that steer people towards each path and the interventions that will help more people stick to the path which they prefer.

For most, but not all, users, this means one of the original cluster paths.

“Most people want to stay at home with minimal professional help,” said Jarrín, who is also director of the Community Health and Aging Outcomes Laboratory at the Rutgers Institute for Health Care Policy health and research on aging. “However, the goal of a significant minority of people is to avoid being a burden on family and friends, and these people tend to want professional care.”

Jarrín added: “Our goal is not to force people into a particular type of care. It’s about helping them plan and get the care that’s right for them. »