AMYOTROPHIC-LATERAL-SCLEROSIS PATIENTS PERSPECTIVES ON USE OF MECHANICAL VENTILATION

Thirteen persons diagnosed with amyotrophic lateral sclerosis were int erviewed to determine the factors involved in making a decision whethe r to use mechanical ventilatory support. All study participants believ ed that they alone should make the decision regarding use of mechanica l ventilation. The factors they considered to be of most importance we re quality of life, severity of disability, availabilty of ventilation by means of a nasal mask, possible admission to a long-term care faci lity, ability to discontinue use of mechanical ventilation, desire to live, concern for their families' emotional health, and concern for ca re demands placed on their families. Suggestions are offered to facili tate the patient's decision-making process through provision of more i nformation and improved dialogue between patient and professional.