The experiences of patients with amyotrophic lateral sclerosis of their decision-making processes to invasive home mechanical ventilation-A qualitative study.
Tina Thorborg, Jeanette Finderup, Dorte Skriver Winther and 2 others
PMID 37071691WHAT IT FOUND
People with ALS deciding about invasive home ventilation kept saying 'so far' and changing their minds.
They wanted support soon after diagnosis, before speaking about it became difficult.
Key findings
01Participants repeatedly doubted their future ventilation decision, often saying 'so far' and changing their minds.
02Patients wanted support directly after diagnosis because many decisions came at once and follow-up could be delayed.
03Uncertainty about future disease course and death dominated participants' thinking, and hope was a common way to cope.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Only seven patients were interviewed, and three declined because they lacked energy, so the views may represent patients with more energy. Relatives were present in some interviews, which may have made patients less willing to share all experiences. Participants were from one Danish centre and excluded those already on invasive ventilation or with cognitive impairment, so findings may not transfer to other countries or later stages. Transcripts were not generally sent back to participants for comments, except one validation. The study reports themes, not whether support or decision aids change decisions or outcomes.
Declared interests
The authors reported no financial support and no conflicts of interest.
The easy way to misread this
Do not read this as evidence that early follow-up or decision aids improve ALS patients' decisions. The study describes seven patients' experiences and did not test any intervention.