How Our Amyotrophic Lateral Sclerosis Patients Die

Introduction: In ALS patients,death is inevitable,with respiratory failure being the most frequent cause of death as published.Palliative care at the end of life, within a model of multidisciplinary care, should be available to all these patients.Objective:To analyze the causes and place of death in a Spanish cohort of ALS patients.Methods:Observational and prospective study(Dec 2005-Jan 2020)of a cohort of ALS patients being followed in a monographic consultation.Variables were collected: age, sex, onset of symptoms, type of ALS, use of NIV, PEG, "cough assist", cause of death, place of death, caregiver, palliative care program. Information was obtained from digital health history, family members, and physician and nurse assistants.Results:Out of 195 registered patients(55.2% male, 84.1% sporadic ALS),141(72%) died by the end of follow-up.The most frequent cause of death was respiratory failure:70.21% (terminal respiratory failure:69.88% and Pneumonia:11.11%),cardiac causes:7.9% and other causes:11.11 % (acute respiratory failure, sudden death, suspected PTE and unknown).Place of death:Hospital (44.68%), Home (43.26%), Institution (5.67%), Unknown (2.1%). 92.2% of the deceased had a caregiver, and only 31.2% were included in a palliative care program. At the time of death, 80.9% were receiving non-invasive ventilatory support, NIV for more than 16h:31.9%, tracheotomy:5% and 44.7% gastrostomy.Conclusions:The causes of death found in our study are consistent with those published in literature.However, the percentage of patients included in palliative care programs at the time of death is still low, as well as the percentage who die at home,so in the future, we must improve the quality of care at the end of life in our patients,