Browsing by Subject "terminal care"

Abstract Background Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease with unknown pathogenesis and beyond curative treatment. Due to severe and progressive problems in swallowing, speech, respiration and mobility, palliative care has a significant role in the treatment of ALS throughout the disease trajectory. Aim To investigate the early integration of structured palliative care pathway for patients with ALS Design A retrospective follow-up study Setting The study population consisted of all ALS patients (69 patients, 35 male, median age 66) referred to the Palliative Care Unit at the Helsinki University Hospital according to the palliative care pathway in 2015 and 2016. The observation period continued until 2018 or death. The data was collected retrospectively from the patient records. Results The median time from the diagnosis to the first contact of the Unit was five months (range 0-88 months). Percutaneous endoscopic gastrostomy (PEG) was placed to 38 (55 %) patients, and 36 (52 %) used non-invasive ventilation (NIV). The median survival was 11 months (range 0-40 months) from the first contact to the Unit, and respectively 18 months (range one month - ten years) from the time of diagnosis. Fifty-seven (83 %) of the 69 patients died during the observation period. Sixty per cent of patients received specialized end of life care, and hospice was the most common place of death (47 %). Conclusions Structured palliative care pathway enables integration of palliative care into the care of ALS patients and specialized end of life care for most of the patients.