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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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>\n                      A UK-wide qualitative study using flexible interviews to explore the experiences of people living with MND (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200916), their family members (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200910), and bereaved family members (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200936) about the use of home mechanical ventilation at the end of life.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Some participants expressed a reluctance to discuss end-of-life decisions, often framed as a desire to \u201clive for the day\u201d due to the considerable uncertainty faced by those with MND. Participants who avoided end-of-life discussions often engaged in \u2018selective decision-making\u2019 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 \u2018timely decisions\u2019 as and when needed. For those who became dependent on ventilation and did not want to discuss end of life, decisions were often \u2018defaulted\u2019 to others, especially once capacity was lost. \u2018Proactive decisions\u2019, 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1186\/s12904-024-01443-1","type":"journal-article","created":{"date-parts":[[2024,5,2]],"date-time":"2024-05-02T06:01:46Z","timestamp":1714629706000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":17,"title":["End of life decision making when home mechanical ventilation is used to sustain breathing in Motor Neurone Disease: patient and family perspectives"],"prefix":"10.1186","volume":"23","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0419-5901","authenticated-orcid":false,"given":"Eleanor","family":"Wilson","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jonathan","family":"Palmer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5152-4814","authenticated-orcid":false,"given":"Alison","family":"Armstrong","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6099-6629","authenticated-orcid":false,"given":"Ben","family":"Messer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1429-0729","authenticated-orcid":false,"given":"Edward","family":"Presswood","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0064-8056","authenticated-orcid":false,"given":"Christina","family":"Faull","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,5,2]]},"reference":[{"issue":"suppl 4","key":"1443_CR1","doi-asserted-by":"publisher","first-page":"iv32","DOI":"10.1136\/jnnp.74.suppl_4.iv32","volume":"74","author":"PN Leigh","year":"2003","unstructured":"Leigh PN, Abrahams S, Al-Chalabi A, Ampong M-A, Goldstein LH, Johnson J, et al. 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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\n                      \n                      section).","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval"}},{"value":"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.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare no competing interests.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"115"}}