The impact of home mechanical ventilation on the time and manner of death for those with Motor Neurone Disease (MND): a qualitative study of bereaved family members

Caswell, Glenys; Wilson, Eleanor

Abstract

Motor neurone disease (MND) is a progressive neurodegenerative disorder which is ultimately terminal. It causes muscle weakness which can lead to the need for assistance in breathing, for some with the disease. This paper draws on qualitative research using semi-structured interviews with 32 people bereaved by the death of a family member with MND who was dependent on home mechanical ventilation, from across the United Kingdom. Interviews explored how the end-of-life of a person who had used non-invasive ventilation to assist their breathing was experienced by participants, who had cared about, and for them. Four themes are used to examine the impact of dependent ventilation technology on the experience of dying on the part of bereaved family members. Themes are: accompanied dying, planned withdrawal of ventilation, blurred time of death, time post-death. The perception and experience of time was a key component across all four themes. Ventilator technology played a critical role in sustaining life, but it could also contribute to a complex dynamic where the realities of death were mediated or obscured. This raises ethical, emotional, and existential considerations, both for the individuals receiving ventilator support and their families, as well as for healthcare professionals involved in end-of-life care.

Citation

Caswell, G., & Wilson, E. (2024). The impact of home mechanical ventilation on the time and manner of death for those with Motor Neurone Disease (MND): a qualitative study of bereaved family members. Social Science and Medicine, 360, Article 117345. https://doi.org/10.1016/j.socscimed.2024.117345

• Journal Article Type: Article
• Acceptance Date: Sep 12, 2024
• Online Publication Date: Sep 18, 2024
• Publication Date: 2024-11
• Deposit Date: Sep 5, 2024
• Publicly Available Date: Sep 19, 2025
• Journal: Social Science and Medicine
• Print ISSN: 0277-9536
• Electronic ISSN: 0277-9536
• Publisher: Elsevier
• Peer Reviewed: Peer Reviewed
• Volume: 360
• Article Number: 117345
• DOI: https://doi.org/10.1016/j.socscimed.2024.117345
• Keywords: Motor Neurone Disease (MND); Amyotrophic Lateral Sclerosis (ALS); Ventilation; dying; end-of-life; time of death; vigil
• Public URL: https://nottingham-repository.worktribe.com/output/39172745
• Publisher URL: https://www.sciencedirect.com/science/article/pii/S0277953624007998?via%3Dihub
• Additional Information: This article is maintained by: Elsevier; Article Title: The impact of home mechanical ventilation on the time and manner of death for those with Motor Neurone Disease (MND): a qualitative study of bereaved family members; Journal Title: Social Science & Medicine; CrossRef DOI link to publisher maintained version: https://doi.org/10.1016/j.socscimed.2024.117345; Content Type: article; Copyright: © 2024 The Authors. Published by Elsevier Ltd.