Motor neurone disease affects around 5000 people in the UK at any given time. It is a progressive disease with a poor prognosis and carries a high symptom burden. Dyspnoea (breathlessness) is one of its most challenging yet common symptoms and occurs because of a weakening of the muscles that control breathing. This case study explores the management of a man diagnosed with amyotrophic lateral sclerosis in the community. His advance decision to refuse treatment directive to avoid non-invasive ventilation during the day was managed through a combination of opioid medication, breath stacking, positioning and other strategies recommended by the National Institute for Health and Care Excellence. Individualised care planning and maintaining quality of life was key in his management.
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