A retrospective review of specialist palliative care involvement in motor neurone disease.

The provision of specialist palliative care to Irish patients suffering from motor neurone disease has not been described in the literature. The purpose of this study was to characterize the care provided at a Dublin hospice. Consecutive referrals between 1st January 1999 and 31st December 2008 (n=72) were reviewed. At the time of data collection, 61 (84.7%) were deceased, 9 (12.5%) were alive and the status of 2 (2.7%) was unknown. At first assessment, 48 (66%) had bulbar symptoms and 35 (49%) had respiratory symptoms, 50 (70%) were receiving Riluzole, 25 (35%) had a feeding tube and 13 (18%) were using non-invasive positive pressure ventilation (NIPPV). Median survival from the point of referral was 7 months (95% CI 4.5-9.4). Of the 61 deceased patients, 22 (36%) died at home, 22 (36%) died in the inpatient unit, 9 (15%) died in hospital and 8 (13%) died in a nursing home.