Amyotrophic Lateral Sclerosis Patients' Perspectives on use of Mechanical Ventilation

Abstract

Thirteen persons diagnosed with amyotrophic lateral sclerosis were interviewed to determine the factors involved in making a decision whether to use mechanical ventilatory support. All study participants believed that they alone should make the decision regarding use of mechanical ventilation. The factors they considered to be of most importance were quality of life, severity of disability, availability of ventilation by means of a nasal mask, possible admission to a long-term care facility, ability to discontinue use of mechanical ventilation, desire to live, concern for their families' emotional health, and concern for care demands placed on their families. Suggestions are offered to facilitate the patient's decision-making process through provision of more information and improved dialogue between patient and professional.