Epub: Sleeman et al. Place of death, and its relation with underlying cause of death, in Parkinson’s disease, motor neurone disease, and multiple sclerosis: A population-based study. Palliat Med. 2013 Jun 4.
Background: Little is known about place of death in chronic neurological diseases.
Results: In this study, 125,242 people 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.
“This study shows the majority of MSers are dying in hospital. Why? I assume it is because the main terminal events relate to infectious complications and MSers are being admitted to have these treated. MSers rarely take out advanced directives or living wills and therefore it left up to the medical teams and family members to make decisions about end-of-life care in emergency situations. We have done a formal research project on this issue and need to submit the results to a journal. In summary it shows that MSers want the option to discuss end-of-life issues and in general are willing to complete advanced directives or living wills. Interesting I have had comments back from several professional MS organisations about including end-of-life issues and assisted suicide in my tube map on the holistic approach to MS. What do you think?”