Abstract

Long-term home-based invasive ventilation in patients with motor neurone disease / amyotrophic lateral sclerosis (MND/ALS) remains rare in the UK. We describe a case of an MND/ALS patient who was treated with long-term invasive ventilation at home but subsequently requested its withdrawal despite a seemingly stable period of his illness. We also discuss the impact of the delivery of this treatment and its withdrawal on his carers, primary healthcare team, community trust managers and specialist palliative care team.

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