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Food for Thought: How Do Patients With ALS Decide About Having a PEG?

University of Pittsburgh
Pittsburgh, PA

Dysphagia is a distressing problem in amyotrophic lateral sclerosis. Patients and caregivers must decide whether to use supplementary non-oral feeding. The deliberations and timing of this decision may be haphazard. The optimum time for this choice, in terms of residual (quality) life expectancy and decision competency, is unknown. Health-care workers may fear that even the offer of enteral feeding might be construed as an unwelcome landmark on the disease deterioration. This paper provides a qualitative report on the subjective experiences of 2 patients deciding whether to have a PEG or not. Semi-structured interviews were conducted with each patient and transcripts are provided for the reader to review.