End of life in multiple sclerosis : Disability, causes and place of death among cases diagnosed from 1981 to 2010 in Pirkanmaa hospital district in Western Finland

Background: Mortality risk and causes of death have been widely studied in MS. Surveys on conditions related to approaching death have not been conducted before in Finland. Objective: Our aim was to sort out the possible needs for end of life (EOL) care in MS by examining causes, place of death and level of hospitalization by age and MS related disability before approaching death. Materials: Data included information for MS patients diagnosed from 1981 to 2010 in a Finnish university hospital district. Information on place and causes of death and care prior to death was based on death certificates from Statistics Finland. Decedents initial disease course, disease modifying treatment (DMT) use and MS related disability status by using EDSS were achieved from hospital records. Results: Data included 113 decedents. Level of disability showed EDSS 6.0 or higher in 54% of the patients. In relapsing onset MS (N 93, 80%) DMTs were used in 11%. Infections, respiratory or other, were the main immediate cause of death (51.3%, n 58) among cases with varying disability. Central or university hospital (42.5%) or community hospital ward (28.3%) were places of death in majority of cases and nursing home (13.3%), home (9.7%) or hospice (3.7%) less often. Place of death did not significantly differ between age-groups (Chi square p = 0.86). Mean age at death was 57 years (range 28–90, SD 13.86). Cardiovascular causes of death were reported mainly in age group 60 years or more and suicide in age group younger than 50 years. Conclusion: The level of hospitalization was high at end of life in all age-groups. High MS related disability and immobility among decedents likely relates to infections as the most common cause of death. Along with our and earlier surveys in this field, we showed that places of death and level of disability before death share similarities in both younger and older age groups highlighting the need of palliative care and end of life care plans in all MS patients with triggers of poor survival. The recently published consensus definition featuring palliative care guideline in MS is aimed at improving end of life care in MS. Our results point at need for future studies in order to assess the impact of palliative care treatment guidelines in MS.Peer reviewe