Decision-making for assisted ventilation in amyotrophic lateral sclerosis

Amyotrophic lateral sclerosis (ALS) is a progressive neurological disease that leads to respiratory compromise and eventually death within two to five years. Even though people with ALS must make many treatment decisions, none has such a significant impact on quality of life and survival as the one pertaining to assisted ventilation. A qualitative research study was undertaken to elicit factors that are pertinent to this decision-making process. Ten individual, semi-structured interviews were conducted with individuals with ALS. Six main themes emerged from the interviews. These are: meaning of the intervention, the importance of context, values, and fears in decision-making, the need for information, and adaptation/acceptance of the intervention. Based on these findings, it is argued that a pluralistic conception of autonomy as well as a shared decision-making model is better suited to give high priority to patient autonomy in this context. Some recommendations to improve clinical practice are proposed