Studying how Americans die may improve end-of-life care

Researchers from Rutgers Health have analyzed millions of Medicare records, uncovering vital insights into the end-of-life care trajectories of older Americans. 

“Older adults may require help managing their chronic conditions, taking medications, or performing personal care activities, such as eating, bathing, and dressing,” wrote the study authors. 

“The ability of patients, caregivers, and communities to support aging in place is impacted by advanced illness and the presence of multiple chronic conditions, including Alzheimer’s disease and other dementias.”

Improving end-of-life care 

The study presents a novel approach to improving end-of-life care by mapping out the distinct paths followed by individuals in their final years.

“Identifying which paths people actually take is a necessary precursor to identifying which factors send different people down different paths and designing interventions that send more people down whatever path is right for them,” said study co-author Olga Jarrín.

Focus of the study 

The research team evaluated the final three years of clinical records from a randomly selected group of Medicare beneficiaries who died in 2018. 

The analysis focused on the amount and location of personal care each patient received, leading to the identification of three major care clusters: home, skilled home care, and institutional care.

Key findings

The researchers found that 59 percent of patients predominantly spent their last three years at home, relying on assistance from friends and family for daily tasks, with professional care being minimal until their final year. 

Another 27 percent of patients were part of the “skilled home care” cluster, where nurses and other skilled professionals supplemented the care provided by family and friends within the patient’s home. 

The remaining 14 percent fell into the “institutional care” cluster, spending most of their last years in hospitals or nursing homes, where they received comprehensive professional care.

Additional insights

The researchers used a group-based trajectory modeling approach to correlate these care trajectories with sociodemographic and health-related metrics. They found notable differences among the clusters, with patients in the skilled home care and institutional care clusters more likely to be female, enrolled in Medicaid, or suffering from dementia. 

Geographic variations were also evident, with extensive use of skilled home care more prevalent in Southern states and institutional care more common in the Midwest.

Broader implications

Haiqun Lin, lead author of the study and a professor of Biostatistics at Rutgers, highlighted the broader implications of the findings.

“Our study not only identifies different patterns of care but also sheds light on the clinical and policy factors that dictate where and when patients receive care,” said Lin.

“Understanding these patterns is crucial for advance care planning, and ultimately, for achieving the triple aim of improving care experiences, reducing care costs, and improving care quality.”

Supportive interventions

The research lays the foundation for future studies aimed at identifying key factors that influence individual end-of-life care paths and developing interventions to support people in following their preferred trajectory. 

“Most people want to stay at home with minimal professional help,” said Jarrín. “However, the goal for a significant minority of people is to avoid being a burden to family and friends, and such people tend to want professional care.” 

“Our goal isn’t forcing people toward any particular type of care. It’s helping them to plan for and get the care that’s right for them.”

The study is published in the journal BMC Geriatrics.

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