title: Case report: Maintaining and withdrawing long-term invasive ventilation in a patient with MND/ALS in a home setting.
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.
authors.affiliation: The Beacon Specialist Community Supportive and Palliative Care Service, Guildford, Surrey, UK. beata.lebon@fph-tr.nhs.uk
authors.forename: B
authors.initials: B
authors.lastname: LeBon
authors.forename: S
authors.initials: S
authors.lastname: Fisher
mesh_terms: D000328:Adult; D000690:Amyotrophic Lateral Sclerosis / Q000150:complications*; D017028:Caregivers / Q000193:education; D004417:Dyspnea / Q000628:therapy; D006699:Home Care Services; D006801:Humans; D006993:Hypnotics and Sedatives / Q000008:administration & dosage; D008297:Male; D011788:Quality of Life; D012121:Respiration, Artificial / Q000379:methods*; D012131:Respiratory Insufficiency / Q000209:etiology / Q000628:therapy*; D013727:Terminal Care / Q000379:methods*; D028761:Withholding Treatment / Q000592:standards
chemical_list: D006993:Hypnotics and Sedatives