End of life decision making when home mechanical ventilation is used to sustain breathing in Motor Neurone Disease: patient and family perspectives

Wilson, Eleanor; Palmer, Jonathan; Armstrong, Alison; Messer, Ben; Presswood, Edward; Faull, Christina

Abstract

Background
Motor Neurone Disease (MND) leads to muscle weakening, affecting movement, speech, and breathing. Home mechanical ventilation, particularly non-invasive ventilation (NIV), is used to alleviate symptoms and support breathing in people living with MND. While home mechanical ventilation can alleviate symptoms and improve survival, it does not slow the progression of MND. This study addresses gaps in understanding end-of-life decision-making in those dependent on home mechanical ventilation, considering the perspectives of patients, family members, and bereaved families.

Methods
A UK-wide qualitative study using flexible interviews to explore the experiences of people living with MND (n = 16), their family members (n = 10), and bereaved family members (n = 36) about the use of home mechanical ventilation at the end of life.

Results
Some participants expressed a reluctance to discuss end-of-life decisions, often framed as a desire to “live for the day” due to the considerable uncertainty faced by those with MND. Participants who avoided end-of-life discussions often engaged in ‘selective decision-making’ related to personal planning, involving practical and emotional preparations. Many faced challenges in hypothesising about future decisions given the unpredictability of the disease, opting to make ‘timely decisions’ as and when needed. For those who became dependent on ventilation and did not want to discuss end of life, decisions were often ‘defaulted’ to others, especially once capacity was lost. ‘Proactive decisions’, including advance care planning and withdrawal of treatment, were found to empower some patients, providing a sense of control over the timing of their death. A significant proportion lacked a clear understanding of the dying process and available options.

Conclusions
The study highlights the complexity and evolution of decision-making, often influenced by the dynamic and uncertain nature of MND. The study emphasises the need for a nuanced understanding of decision-making in the context of MND.

• Journal Article Type: Article
• Acceptance Date: Apr 24, 2024
• Online Publication Date: May 2, 2024
• Publication Date: May 2, 2024
• Deposit Date: May 2, 2024
• Publicly Available Date: May 3, 2024
• Journal: BMC Palliative Care
• Electronic ISSN: 1472-684X
• Publisher: Springer Verlag
• Peer Reviewed: Peer Reviewed
• Volume: 23
• Issue: 1
• Article Number: 115
• DOI: https://doi.org/10.1186/s12904-024-01443-1
• Keywords: Home mechanical ventilation (HMV), Withdrawal of treatment, End-of-life, Interviews, Patient perspectives, Motor neurone disease (MND), Decision-making, Non-invasive ventilation (NIV), Family perspectives
• Public URL: https://nottingham-repository.worktribe.com/output/34347008
• Publisher URL: https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-024-01443-1
• Additional Information: Received: 6 February 2024; Accepted: 24 April 2024; First Online: 2 May 2024; : ; : Ethical approval for the study was granted by the London-Dulwich Research Ethics Committee for the NHS Health Research Authority in April 2021 (REC ref: 21/PR/0252). R&D approvals for each NHS Trust were also acquired. Informed consent was gained from all participants to undertake the interviews (further details can be found in the section).; : Informed consent was gained from all participants to take part in the interviews and for anonymised sections to be used for publication and dissemination. Pseudonyms have been used throughout this article.; : The authors declare no competing interests.