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Published on: March 4, 2014
Amyotrophic lateral sclerosis and assisted ventilation: how patients decide
Josée Lemoignan1, Carolyn Ells
1Montreal Neurological Hospital ALS Clinic, McGill University Health Center-Montreal, Neurological Hospital, 3801 University Ave., Montreal, Quebec, Canada.
Palliative & Supportive Care
|June 19, 2010
Summary
Decisions about assisted ventilation significantly impact quality of life for amyotrophic lateral sclerosis (ALS) patients. Understanding patient values, fears, and information needs is crucial for effective decision-making support.
Area of Science:
- Neurology
- Respiratory Medicine
- Palliative Care
Background:
- Treatment decisions for amyotrophic lateral sclerosis (ALS) profoundly affect patient quality of life and survival.
- Decisions regarding assisted ventilation are among the most impactful for individuals with ALS.
Purpose of the Study:
- To explore the decision-making experiences of patients with ALS and their caregivers concerning assisted ventilation.
- To identify key factors influencing these critical life choices.
Main Methods:
- Qualitative phenomenology methodology was employed.
- Semi-structured interviews were conducted with 10 individuals with ALS and their caregivers.
Main Results:
- Six themes emerged: the meaning of ventilation (non-invasive vs. invasive), contextual factors (support, finances), personal values (autonomy, life quality), fears (respiratory distress, death), information needs (differing between patients and caregivers), and adaptation to the intervention.
- Patients distinguish between ventilation for symptom relief and life-saving invasive ventilation.
Conclusions:
- Autonomy is highly valued by ALS patients and caregivers in assisted ventilation decisions.
- Decision-making is influenced by a complex interplay of rational and emotional factors, including fears and values.
- Health professionals must anticipate these factors and engage in tailored, periodic discussions about assisted ventilation.
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