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Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives

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Abstract

The objective was to identify factors associated with decisions made by patients with amyotrophic lateral sclerosis (ALS) to accept or decline non-invasive ventilation (NIV) and/or gastrostomy in a prospective population-based study. Twenty-one people with ALS, recruited from the South-East ALS Register who made an intervention decision during the study timeframe underwent a face-to-face in-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) external factors (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.

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Acknowledgments

This study was funded by the Motor Neurone Disease Association, UK. AA-C received support from the European Commission’s Health Seventh Framework Programme. AA-C and LHG receive salary support from the National Institute for Health Research (NIHR) Dementia Biomedical Research Unit at the South London and Maudsley NHS Foundation Trust and King’s College London. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. AJ has received research support from the Psychiatry Research Trust. NHM and AJ have received conference travel expenses from Brain. PNL has received other research support but not related to this study from the Medical Research Council, Motor Neurone Disease Association and the Wellcome Trust UK. LHG currently receives research support from the National Institute for Health Research (NIHR) UK.

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Correspondence to L. H. Goldstein.

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Greenaway, L.P., Martin, N.H., Lawrence, V. et al. Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives. J Neurol 262, 1002–1013 (2015). https://doi.org/10.1007/s00415-015-7665-z

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  • DOI: https://doi.org/10.1007/s00415-015-7665-z

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