Seguimiento de pacientes con Esclerosis Lateral amiotrófica por un Equipo de Cuidados Paliativos Domiciliario

Background and objectives : Few studies have reported the end of life for patients with amyotrophic lateral sclerosis (ALS). Our main objective was to describe the end-of- life trajectory in patients monitored by a palliative home care team (PHTC). The secondary objective was to examine factors associated with place of death and survival. Setting and design: Retrospective observational study in a cohort of patients diagnosed with ALS followed by a PHCT. Sociodemographic variables, survival from the start of ventilation and gastrostomy, consumption of health resources, opioid use, care planning, place of death and cause of death were analyzed. Results: Sixty patients were included. Main symptoms were dyspnea and dysphagia. Advance care planning was possible for 83 ░ %. Fifty-two (83 ░ %) died at home or in a palliative care unit. The cause of death was respiratory failure, respiratory infection, death during sleep, and refusal of treatment for 47 ░ %, 16 ░ %, 15 ░ % and 15 ░ %, respectively. Opioids were required in 47 ░ %, and 25 ░ % palliative sedation. Average survival from the start of enteral feeding, noninvasive mechanical ventilation and invasive ventilation was 7, 13 and 12 months, respectively. Average of visits was 14 (SD 12). Having received informal support and not having been admitted to the hospital during the study period were associated with significantly increased of dying at home. Conclusions: The most frequent cause of death was respiratory failure, most cases required opioids, and one out of every four palliative sedation. Most die at home.