{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,23]],"date-time":"2026-07-23T15:02:54Z","timestamp":1784818974232,"version":"3.55.0"},"reference-count":30,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2026,7,1]],"date-time":"2026-07-01T00:00:00Z","timestamp":1782864000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2026,7,1]],"date-time":"2026-07-01T00:00:00Z","timestamp":1782864000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Chron Respir Dis"],"published-print":{"date-parts":[[2026,7]]},"abstract":"<jats:p>The option of tracheostomy and prolonged invasive mechanical ventilation (IMV) for chronic respiratory failure in myotonic dystrophy type 1 (DM1) poses challenges in decision-making. The Myotonic Dystrophy Foundation consensus recommendations on respiratory management do not directly address the implications of this intervention given the progressive physical and cognitive manifestations of DM1. Here, we consider IMV in DM1 using the ethical principles of beneficence, non-maleficence, autonomy and justice. We call for further research on post-tracheostomy morbidity, mortality, and quality of life (QOL) to help guide decision-making. Our ethical analysis has yielded programmatic changes we hope will improve patient outcomes.<\/jats:p>","DOI":"10.1177\/14799731261469849","type":"journal-article","created":{"date-parts":[[2026,7,21]],"date-time":"2026-07-21T10:29:39Z","timestamp":1784629779000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Shared decision-making about prolonged invasive ventilation for adults with myotonic dystrophy type 1"],"prefix":"10.1177","volume":"23","author":[{"ORCID":"https:\/\/orcid.org\/0009-0009-9741-0623","authenticated-orcid":false,"given":"Jalal","family":"Moolji","sequence":"first","affiliation":[{"name":"University of Alberta, Edmonton, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Erika","family":"MacIntyre","sequence":"additional","affiliation":[{"name":"University of Alberta, Edmonton, Canada"},{"name":"University of Alberta, Edmonton, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maria","family":"Castro Codesal","sequence":"additional","affiliation":[{"name":"University of Alberta, Edmonton, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Janice","family":"Richman-Eisenstat","sequence":"additional","affiliation":[{"name":"University of Alberta, Edmonton, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2026,7,21]]},"reference":[{"key":"e_1_3_3_2_2","doi-asserted-by":"publisher","DOI":"10.1159\/000524734"},{"key":"e_1_3_3_3_2","doi-asserted-by":"publisher","DOI":"10.1017\/cjn.2016.257"},{"key":"e_1_3_3_4_2","doi-asserted-by":"publisher","DOI":"10.1136\/thoraxjnl-2017-210610"},{"key":"e_1_3_3_5_2","doi-asserted-by":"publisher","DOI":"10.1159\/000505634"},{"key":"e_1_3_3_6_2","first-page":"221436022614216","article-title":"Substance use may be associated with non-adherence to non-invasive ventilation in adults with myotonic dystrophy type 1","author":"Moolji J","year":"2026","unstructured":"Moolji J, MacIntyre E, Richman-Eisenstat J. Substance use may be associated with non-adherence to non-invasive ventilation in adults with myotonic dystrophy type 1. J Neuromuscul Dis 2026; 22143602261421680. https:\/\/doi.org\/10.1177\/22143602261421680","journal-title":"J Neuromuscul Dis"},{"key":"e_1_3_3_7_2","doi-asserted-by":"publisher","DOI":"10.4187\/respcare.06113"},{"key":"e_1_3_3_8_2","volume-title":"Principles of Biomedical Ethics","author":"Beauchamp TL","year":"1979","unstructured":"Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 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