Auditoría clínica del manejo de la esclerosis lateral amiotrófica en situación terminal: resultados preliminares

Abstract

ObjectivesTo audit the quality of the care delivered by our Palliative Care Unit (PCU) to our patients with Amyotrophic Lateral Sclerosis (ALS), and to compare our experience with the relevant literature. Material and methodsWe report a descriptive observational retrospective study with our first 14 ALS patients who attended our PCU within an acute teaching hospital. The cases were analysed using 52 variables selected by our multiprofessional team, and then grouped into 8 categories (demographics 2, nature of illness 8, end of life 10, symptoms 11, psychological 2, ethics 10, drug therapy 6, and team 3). ResultsThe non-statistical analysis suggested that we are faced with a highly complex sample to manage with palliative care, and revealed interesting information regarding place of death, cause of death, use of advanced directives, use of mechanical ventilation and its discontinuation, and impact of the fear of choking to death in patients and family. The median equivalent daily dose of oral morphine ranged from 0 to 90mg/day on admission to PCU, and 0 to 2700mg/day on day of death. Midazolam parenteral doses ranged from 0 to 45mg/day on admission to PCU, and 0 to 415mg/day on day of death. High doses of morphine and midazolam for symptom control were associated in all cases with previous exposure to central nervous system (CNS) drugs, most notably to opioids (6 cases). ConclusionsOur initial experience validates the importance of allowing such patients to be treated within PCUs in acute teaching hospitals, and even more so if they work closely together with specific ALS units located in the same institution.