Long-term mechanical ventilation in amyotrophic lateral sclerosis

Abstract

LTMV outside ICU was possible in ten patients, seven of whom returned home. Returning home is very difficult for patients dependent on a ventilator who lack family support.

Management of respiration in MND/ALS patients: An evidence based review

“…Secondly, patients and carers should be made aware as early as possible about the benefits and limitations of mechanical ventilation and the possible choice of palliative care (11,20). Should patients decline use of non-invasive ventilation or cannot tolerate it, patients should be informed about the terminal phase, hospice referral and palliative care (7).…”

“…Non-invasive positive pressure ventilation is reported to be more favourable with MND/ALS patients than invasive ventilation and thus non-invasive ventilation should be considered before tracheostomy (7). However, there is some evidence that patients who start mechanical ventilation using non-invasive ventilators are more likely to refuse invasive ventilation in the later stages (20,52). Non-invasive ventilation such as NIPPV can reverse respiratory failure and improve symptoms in neuromuscular and chest wall diseases (12,31,(53)(54)(55), ease sleep obstructive events (53,(56)(57)(58) and improve general quality of life (9,47,(59)(60)(61)(62)(63).…”

“…Ventilator dependent patients do require much support. This can make use of invasive ventilation in the home very difficult, though it is less costly than institutional care (8,20,79,80). Use of a multidisciplinary team approach including psychological support is recommended for supporting ventilation in the home (11,79,82,83).…”

“…Forced vital capacity (FVC) is the most utilised form of monitoring respiratory function in neuromuscular patients. A decrease in vital capacity (VC) to 50% predicted is associated with respiratory symptoms (14,(17)(18)(19)(20). Vital capacity is considered to be predictive of survival time, as the lower the vital capacity the shorter the survival time in MND/ALS (7,17,21).…”

Neumólogos, ventilación mecánica y técnicas complementarias

“…. y tener presente algo que J. Escarrabill escribió hace ya años 6 : «the therapy "package" must also include the organization of care». En nuestra opinión, para perfeccionar la práctica clínica actual, los neumólogos debemos mejorar el nivel de conocimientos y gestionar cambios en algunos aspectos organizativos.…”