{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,17]],"date-time":"2026-08-17T11:06:42Z","timestamp":1786964802738,"version":"build-2736575974"},"reference-count":19,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2024,10,18]],"date-time":"2024-10-18T00:00:00Z","timestamp":1729209600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Evaluation Clinical Practice"],"published-print":{"date-parts":[[2025,4]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Rationale, Aims and Objectives<\/jats:title><jats:p>With absence of a cure, the mainstay of management for patients with motor neurone disease (MND) is holistic supportive care and symptom control. Non\u2010invasive ventilation (NIV) can provide relief from distressing dyspnoea which often accompanies progressive respiratory muscle weakness. Some patients using NIV will become dependent on it, with a small proportion of these patients going on to request withdrawal. Despite being legal in the UK, elective withdrawal of NIV can be emotionally and ethically challenging for the staff involved. To guide the process of symptom\u2010controlled withdrawal, in 2015 the Association for Palliative Medicine (APM) released clinical guidance. The aim of this study is to explore the experiences of the multi\u2010disciplinary team (MDT) involved in elective withdrawal of NIV in an MND cohort following the publication of this guidance.<\/jats:p><\/jats:sec><jats:sec><jats:title>Method<\/jats:title><jats:p>A qualitative, semi\u2010structured interview study of eight NHS qualified staff members (three Doctors, four Nurses, one Allied Health Professional). Clinicians were asked questions relating to their experiences of the withdrawals. After full transcription, data was analysed thematically.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Four main themes were identified, offering insight into how the withdrawals affected staff's well\u2010being and summarised via an \u2018enablers and barriers\u2019 model. The setting was important, as was the depth and longevity of the clinician's investment in the patient. Positive influences on staff's well\u2010being arose from the sense of fulfilling the patient's wishes, good teamwork, presence of an experienced clinician and awareness of the APM (2015) Guidance. Conversely, barriers to well\u2010being were expressed through the unpredictability of each scenario, moral and ethical uncertainties, external pressures on time, mismatched expectations, poor communication and the emotional intensity of the act.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Elective withdrawal is highly emotive, simultaneously positively and negatively influencing staff well\u2010being. By addressing the potential mitigating factors, the overall impact on staff's mental health and well\u2010being maybe improved and thus, subsequently, patient care.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jep.14166","type":"journal-article","created":{"date-parts":[[2024,10,18]],"date-time":"2024-10-18T07:24:36Z","timestamp":1729236276000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["A qualitative exploratory study into medical, nursing and allied health professional experiences of elective withdrawal of non\u2010invasive ventilation in a motor neurone disease cohort"],"prefix":"10.1111","volume":"31","author":[{"ORCID":"https:\/\/orcid.org\/0009-0007-9000-7597","authenticated-orcid":false,"given":"Gemma","family":"Cox","sequence":"first","affiliation":[{"name":"Musgrove Park Hospital, Somerset NHS Foundation Trust Taunton UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charlie","family":"Davis","sequence":"additional","affiliation":[{"name":"Musgrove Park Hospital, Somerset NHS Foundation Trust Taunton UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julie","family":"Woodley","sequence":"additional","affiliation":[{"name":"University of the West of England Bristol UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2024,10,18]]},"reference":[{"key":"e_1_2_8_2_1","volume-title":"Clinical guidelines 42: Motor neurone disease: Assessment and management [online]","author":"National Institute of Clinical Excellence (NICE)","year":"2016"},{"issue":"1","key":"e_1_2_8_3_1","first-page":"1","article-title":"Palliative care in motor neurone disease: where are we now?","volume":"12","author":"Oliver D","year":"2018","journal-title":"Palliat Care Res"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjspcare-2016-001139"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjspcare-2014-000826"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.57.11.2040"},{"key":"e_1_2_8_7_1","volume-title":"Withdrawal of assisted ventilation at the request of a patient with motor neurone disease [online]","author":"Association for Palliative Medicine (APM)","year":"2015"},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjspcare-2020-002383"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjspcare-2017-001464"},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12904-024-01443-1"},{"key":"e_1_2_8_11_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjspcare-2013-000470"},{"issue":"5","key":"e_1_2_8_12_1","first-page":"1","article-title":"Mechanical ventilation withdrawal in motor neurone disease: an evaluation of practice","volume":"13","author":"Faull C","year":"2022","journal-title":"BMJ Support Palliat Care"},{"key":"e_1_2_8_13_1","doi-asserted-by":"publisher","DOI":"10.3390\/brainsci12091162"},{"key":"e_1_2_8_14_1","doi-asserted-by":"crossref","unstructured":"PhelpsK RegenE OliverD McDermottC FaullC.Withdrawal of ventilation at the patient's request in MND: a retrospective exploration of the ethical and legal issues concerning relatives Nurses and Allied Health Care Professionals. (pre\u2010print). Available from: Withdrawal of Assisted Ventilation at the Patient's Request in MND\/ALS: A Retrospective Exploration of the Ethical and Legal Issues Concerning Relatives Nurses and Allied Health Care Professionals|medRxiv Preprint.2022.","DOI":"10.1101\/2022.03.14.22271768"},{"issue":"3","key":"e_1_2_8_15_1","first-page":"96","article-title":"Communication surrounding initiation and withdrawal of non\u2010invasive ventilation in adults with motor Neuron(e) disease: clinicians' and family members' perspectives","volume":"24","author":"Chapman C","year":"2021","journal-title":"Int J Care Coord"},{"key":"e_1_2_8_16_1","doi-asserted-by":"publisher","DOI":"10.12968\/ijpn.2022.28.7.298"},{"key":"e_1_2_8_17_1","volume-title":"Introducing research methodology [online]","author":"Flick U","year":"2020"},{"key":"e_1_2_8_18_1","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"e_1_2_8_19_1","volume-title":"Naturalistic inquiry [online]","author":"Lincoln Y","year":"1985"},{"key":"e_1_2_8_20_1","first-page":"1","volume-title":"Thematic analysis: Striving to meet the trustworthiness criteria","author":"Nowell L","year":"2017"}],"container-title":["Journal of Evaluation in Clinical Practice"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jep.14166","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,4,28]],"date-time":"2025-04-28T14:29:04Z","timestamp":1745850544000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/jep.14166"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,10,18]]},"references-count":19,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2025,4]]}},"alternative-id":["10.1111\/jep.14166"],"URL":"https:\/\/doi.org\/10.1111\/jep.14166","archive":["Portico"],"relation":{},"ISSN":["1356-1294","1365-2753"],"issn-type":[{"value":"1356-1294","type":"print"},{"value":"1365-2753","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,10,18]]},"assertion":[{"value":"2024-05-30","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2024-09-25","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2024-10-18","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e14166"}}