Aim: To study the outcomes from initiation of percutaneous endoscopic gastrostomy (PEG) feeding in young people with profound multiple disabilities.
Methods: Observations were made on 40 adults with lifelong intellectual disability (mental retardation) and quadriplegia, in whom PEG feeding was initiated during 1990-2008. There were 20 men and 20 women aged 15-40 years at the time of the audit, living in settings with 24 h registered nurse staffing.
Results: Undernutrition and recurrent aspiration with frequent infections were cited as reasons for PEG feeding. The positive outcomes were that some were said to be more alert for a time following the procedure; and these young adults lived with PEG feeding for an average of 8.5 years, some up to 18 years. In that time, however, they all experienced complications of the PEG insertion, and of the PEG feeding process. There were no measurable improvements in cognition. There were no reductions in prescription of medications. They all required frequent daily interventions by nurses to maintain medical stability. Ten people died during this review period, from continued deterioration in neurological status, with pneumonia cited as the terminal event.
Conclusions: Unlike other people with neurological deterioration, young adults with lifelong multiple disabilities may live for many years with PEG feeding. There is little gain in quality of life.