Authors: L P Greenaway N H Martin V Lawrence A Janssen A AlChalabi P N Leigh L H Goldstein
Publish Date: 2015/02/17
Volume: 262, Issue: 4, Pages: 1002-1013
Abstract
The objective was to identify factors associated with decisions made by patients with amyotrophic lateral sclerosis ALS to accept or decline noninvasive ventilation NIV and/or gastrostomy in a prospective populationbased study Twentyone people with ALS recruited from the SouthEast ALS Register who made an intervention decision during the study timeframe underwent a facetoface indepth 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 patientcentric 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 interrelated Decisionmaking processes for the patients were found to be complex and multifaceted and reinforce arguments for individualised rather than ‘algorithmbased’ approaches to facilitating decisionmaking by people with ALS who require palliative interventionsThis study was funded by the Motor Neurone Disease Association UK AAC received support from the European Commission’s Health Seventh Framework Programme AAC 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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