Baxter, SK, Baird, WO, Thompson, S et al. (7 more authors) (2013) The use of non-invasive ventilation at end of life in patients with motor neurone disease: A qualitative exploration of family carer and health professional experiences. Palliative Medicine, 27 (6). 516 - 523. ISSN 0269-2163
Abstract
Background: Non-invasive ventilation improves quality and quantity of life in patients with motor neurone disease who have respiratory failure. Use of non-invasive ventilation may, however, result in complex clinical issues for end-of-life care, with concerns as to whether and how it should be withdrawn.
Aim: This study aimed to describe carer and health professional experiences of end-of-life care of motor neurone disease patients using non-invasive ventilation.
Design/participants: This article reports data from qualitative interviews with family carers and professionals following the death of patients with motor neurone disease who were using non-invasive ventilation in the final phase of the disease.
Results: Ten of the 20 patients initiated on non-invasive ventilation were using it in the end-of-life phase of their disease, with 5 using it for 24 h/day. Interviews were carried out with nine family carers and 15 professionals. Nine recurring themes were identified in the data. Both carers and health-care professionals perceived that the terminal phase of motor neurone disease was unexpectedly rapid and that this often led to unplanned interactions with the emergency services. Carers of patients who used non-invasive ventilation perceived non-invasive ventilation as aiding patient comfort and anxiety at the end of life.
Conclusions: The use of non-invasive ventilation was described as beneficial and was not perceived by carers or most professionals to have adversely impacted patient’s end-of-life experience. This study highlights variation in patient wishes regarding usage towards the end of life, uncertainty regarding appropriate management among professionals and the importance of disseminating end-of-life wishes.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2013 Sage. This is an author produced version of a paper subsequently published in Palliative Medicine. Uploaded in accordance with the publisher's self-archiving policy. |
Keywords: | Motor neurone disease; amyotrophic lateral sclerosis; non-invasive ventilation; end-of-life care; qualitative research |
Dates: |
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Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > School of Health and Related Research (Sheffield) |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 06 Aug 2013 14:06 |
Last Modified: | 06 Aug 2013 14:06 |
Published Version: | http://dx.doi.org/10.1177/0269216313478449 |
Status: | Published |
Publisher: | Sage |
Identification Number: | 10.1177/0269216313478449 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:76169 |