End-of-Life Care Services for Neurodegenerative Diseases Need Improvement

Compared with people with brain or pancreatic cancer, people with neurodegenerative diseases were more likely to visit the emergency department and less likely to use inpatient and hospice services at end of life.

People with neurodegenerative diseases vs brain or pancreatic cancer are more likely to visit the emergency department (ED), but less likely to use inpatient and hospice services during the end-of-life period, according to study findings published in Neurology.

Researchers conducted a population-based retrospective cohort study to describe and compare resource utilization among decedents with neurodegenerative diseases and cancer. Medicare Part A (inpatient) and B (outpatient) beneficiaries with Alzheimer disease (AD), Parkinson disease (PD), or amyotrophic lateral sclerosis (ALS) who died in 2018 were included. Decedents with malignant brain tumors or pancreatic cancer were also included as comparators without neurodegenerative disease. Primary outcomes included outpatient ED visits with discharge to home that did not result in hospitalization or skilled nursing facility placement, admission to an acute care hospital and/or skilled nursing facility, and receipt of hospice services in the last year of life. Total health care spending was also calculated. Multivariable logistic regression models were used in statistical analysis.

This work not only has the potential to improve EoL care practices at the patient and physician levels but also to improve EoL care provision and reduce health care spending at the state and national levels.

A total of 357,926 decedents were included in the study, of whom 276,216 (median age, 88.2; women, 65.58%; White, 86.73%) were diagnosed with AD, 52,596 (median age, 83.7; women, 42.39%; White, 90.0%) with PD, 3893 (median age, 71.1; women, 45.18%; White, 87.41%) with ALS, 6618 (median age, 75.1; women, 47.78%; White, 89.94%) with a brain tumor, and 18,603 (median age, 77.1; women, 51.96%; White, 85.55%) with pancreatic cancer.

Decedents with neurodegenerative diseases vs malignant brain tumors had higher odds of ED use (AD: adjusted odds ratio [aOR], 1.17; 95% CI, 1.11-1.23; PD: aOR, 1.18; 95% CI, 1.11-1.25; ALS: aOR, 1.11; 95% CI, 1.01-1.23), but lower odds of hospitalization (AD: aOR, 0.64; 95% CI, 0.60-0.68; PD: aOR, 0.65; 95% CI, 0.61-0.69; ALS: aOR, 0.33; 95% CI, 0.30-0.37) and hospice enrollment (AD: aOR, 0.33; 95% CI, 0.31-0.36; PD: aOR, 0.33; 95% CI, 0.31-0.36; ALS: aOR, 0.41; 95% CI, 0.36-0.46).

Similarly, decedents with neurodegenerative diseases vs pancreatic cancer had greater odds of ED use (AD: aOR, 1.55; 95% CI, 1.49-1.60; PD: aOR, 1.39; 95%CI, 1.33-1.45; ALS: aOR, 1.32; 95% CI, 1.20-1.45), but lower odds of hospitalization (AD: aOR, 0.81; 95% CI, 0.78-0.84; PD: aOR, 0.75; 95% CI, 0.71-0.78; ALS: aOR, 0.29; 95% CI, 0.26-0.32) and hospice enrollment (AD: aOR, 0.39; 95% CI, 0.37-0.41; PD: aOR, 0.38; 95% CI, 0.36-0.40; ALS: aOR, 0.49; 95% CI, 0.45-0.55).

Study limitations include the lack of data regarding cause of death, unknown disease duration and stage, and inability to capture data from private insurance claims.

“This work not only has the potential to improve EoL [end of life] care practices at the patient and physician levels but also to improve EoL care provision and reduce health care spending at the state and national levels,” the study authors concluded.

References:

Aamodt WW, Sun C, Dahodwala N, et al. End-of-life health care service use and cost among Medicare decedents with neurodegenerative diseases. Neurology. 2024;103(9):e209925. doi:10.1212/WNL.0000000000209925