Decision-making for tracheostomy in amyotrophic lateral sclerosis (ALS): a retrospective study

ALS patients should discuss the issue of tracheostomy before the onset of terminal respiratory failure. While the process of shared decision-making is desirable, there are few data on the practical application of this real-life situation.

To determine how a decision-making process is actually carried out, we analysed the episodes of acute respiratory failure preceding tracheostomy.

We studied the charts of a group of ALS patients after tracheostomy. An interview focusing on the existence of anticipated directives was carried out. Tracheostomies were classified as planned or unplanned according to the presence of a decision plan.

A total of 209 ALS patients were cared for during a three-year period. Of these patients, 34 (16%) were tracheotomised. In 38% of cases, tracheostomy was planned, 41% were unplanned, and 21% remained undiagnosed.

A minority of ALS patients make a voluntary decision for tracheostomy before the procedure is conducted. The advising process of care still presents limits that have been thus far poorly addressed. In the future, we will need to develop guidelines for the timing and content of the shared-decision making process.