The Emotions Experienced by ALS Patients and Their Families When Deciding Whether to Use Ventilation

Abstract

Patients with amyotrophic lateral sclerosis (ALS) must sometimes make a difficult decision regarding whether to begin using artificial ventilation, such as tracheostomy positive-pressure ventilation (TPPV). Here we investigated the emotions experienced by ALS patients and their family members at such times, by reviewing the relevant literature. We also discuss ways that nurses can support this decision-making. We searched the Ichushi database (1980–2018) and identified nine studies, which revealed that the emotions of the ALS patients during the decision-making are as follows.

Refusal to be kept alive; distress due to disagreement with family members; desire to survive based on a fear of death; hesitation to make a life-or-death decision; self-disgust and resistance to wearing a respirator; consideration to caregivers and transfer of self-determination rights; a strong desire to stay alive. The emotions experienced by family members of ALS patients are: hope for the patient's survival; struggling with the obligation to make a decision in unavoidable circumstances; concern about the extension of the patient's life; concern about the impact of the burden of care; regret about the unexpected situation; conflicts about differing opinions; positive feelings towards the patient. In light of these results, it is necessary to intervene at an early stage for ALS patients and their families, and to support the formation of their agreement about ventilation decisions that will not be regretted later.