NeuralCipher Research overview
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IntroductionAccess to palliative care is often delayed and fragmented for patients with chronic neurological diseases. This study aimed to characterize the place and cause of death among individuals with chronic neurological diseases to help identify potential gaps in palliative care provision.MethodIn this cross-sectional study, all death certificates from the city of Munich, Germany (2020-2023) were reviewed. Cases were included if malignant brain tumours, amyotrophic lateral sclerosis (ALS) or other motor neuron diseases, Parkinson's disease (PD), multiple sclerosis (MS) or other neurodegenerative or neuromuscular diseases were recorded as the cause of death or as a comorbidity.ResultsOf 60,357 deaths, 2,536 individuals (4.2%) had at least one chronic neurological disease. The most common place of death was the hospital (43.8%), followed by nursing homes (25.9%) and the private home (25.0%), with variations among disease subgroups. Overall, the neurological disease was recorded as the immediate or underlying cause of death in 57.3% of cases, while in the remaining cases it was documented as a comorbidity, reflecting its presence without formal causal attribution to death.DiscussionThis population-level analysis provides insight into the place and circumstances of death for a large cohort of patients with chronic neurological diseases in a major German metropolitan area and highlights substantial heterogeneity in end-of-life trajectories. The findings indicate that mortality statistics based on death certificates reflect structural limitations in cause-of-death attribution. Nevertheless, place of death remains a robust indicator, showing high hospital utilization and limited hospice use across most diagnostic groups, underscoring potential gaps in goal-concordant care.
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