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Abstract

The objective was to identify factors associated with decisions made by patients with amyotrophic lateralsclerosis (ALS) to accept or decline non-invasive ventilation(NIV) and/or gastrostomy in a prospective population based study. Twenty-one people with ALS, recruited fromthe South-East ALS Register who made an intervention decision during the study timeframe underwent a face-to facein-depth interview, with or without their informal caregiver present. Sixteen had accepted an intervention (11 accepted gastrostomy, four accepted NIV and one accepted both interventions). Five patients had declined gastrostomy. Thematic analysis revealed three main themes: (1)patient-centric factors (including perceptions of control,acceptance and need, and aspects of fear); (2) externalfactors (including roles played by healthcare professionals,family, and information provision); and (3) the concept of time (including living in the moment and the notion of‘right thing, right time’). Many aspects of these factors were inter-related. Decision-making processes for the patients were found to be complex and multifaceted and reinforce arguments for individualised (rather than ‘algorithm-based’) approaches to facilitating decision-making by people with ALS who require palliative interventions.
Original languageEnglish
Pages (from-to)1002-1013
Number of pages12
JournalJournal of Neurology
Volume262
Issue number4
Early online date17 Feb 2015
DOIs
Publication statusPublished - Apr 2015

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