Place of death in patients with amyotrophic lateral sclerosis

Amyotrophic lateral sclerosis (ALS) is a degenerative neurological disorder that affects motor neurons. Involvement of respiratory muscles causes the failure of the ventilator pump with more or less significant bulbar troubles. ALS course is highly variable but, in most cases, this disease entails a very significant burden for patients and caregivers, especially in the end-of-life period. In order to analyze the characteristics of ALS patients who die at home (DH) and in hospital (DHosp) and to study the variability of clinical practice, a retrospective medical records analysis was performed (n=77 from five hospitals).

time elapsed since the onset of symptoms and the beginning of ventilation, characteristics of ventilation (device, mask and hours/day), and support devices and procedures.

In all, 14% of patients were ventilated by tracheotomy. From the analysis, 57% of patients were of DH. Mean time since the onset of symptoms was 35.93±25.89 months, significantly shorter in patients who DHosp (29.28±19.69 months) than DH (41.12±29.04) (p=0.044). The percentage of patients with facial ventilation is higher in DHosp (11.4% vs 39.4%, p<0.005). DH or not is related to a set of elements in which health resources, physician attitudes and support resources in the community play a role in the decision-making process. There is great variability between countries and between hospitals in the same country. Given the variability of circumstances in each territory, the place of death in ALS might not be the most important element; more important are the conditions under which the process unfolds.