Background: Little is known about place of death in chronic neurological diseases. Mortality statistics are ideal for examining trends in place of death, but analyses are limited by coding rule changes.
Aim: To examine the relationship between place of death and underlying cause of death in Parkinson's disease, multiple sclerosis and motor neurone disease and the impact of coding rule changes on analysis of place of death.
Design: Population-based study. Proportion ratios for death in hospice, home, care home and hospital were calculated according to underlying cause of death, using multivariable Poisson regression.
Participants: Deaths in England (1993-2010) with any mention of Parkinson's disease, multiple sclerosis or motor neurone disease as a cause of death, identified from national mortality data.
Results: In this study, 125,242 patients with Parkinson's disease, 23,501 with multiple sclerosis, and 27,030 with motor neurone disease were included. Home deaths ranged from 9.7% (Parkinson's disease) to 27.1% (motor neurone disease), hospice deaths ranged from 0.6% (Parkinson's disease) to 11.2% (motor neurone disease) and hospital deaths ranged from 43.4% (Parkinson's disease) to 55.8% (multiple sclerosis). In Parkinson's disease and multiple sclerosis, cancer as underlying cause of death increased likelihood of hospice death (proportion ratio (PR): 18.8, 95% confidence interval (CI) = 16.1-22.0; 8.88, 95% CI = 7.49-10.5) and home death (PR: 1.91, 95% CI = 1.80-2.04; 1.71, 95% CI = 1.56-1.88). Dementia as underlying cause of death increased likelihood of care home death in Parkinson's disease (PR: 1.25, 95% CI = 1.19-1.32), multiple sclerosis (PR: 1.73, 95% CI = 1.22-2.45) and motor neurone disease (PR: 2.36, 95% CI = 1.31-4.27).
Conclusions: Underlying cause of death has a marked effect on place of death. The effects of coding rule changes are an essential consideration for all research using underlying cause of death to study place of death.
Keywords: Multiple sclerosis; Parkinson’s disease; motor neurone disease; palliative care; terminal care.