{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,25]],"date-time":"2026-08-25T08:46:35Z","timestamp":1787647595742,"version":"build-2736575974"},"reference-count":28,"publisher":"BMJ","issue":"5","license":[{"start":{"date-parts":[[2022,7,14]],"date-time":"2022-07-14T00:00:00Z","timestamp":1657756800000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["Pract Neurol"],"accepted":{"date-parts":[[2022,5,10]]},"published-print":{"date-parts":[[2022,10]]},"abstract":"<jats:p>Guidance and protocols of end-of-life care have been directed towards the care of patients with cancer. It is possible to extrapolate some of these to people with long-term neurological conditions, but there are obvious differences. Neurological conditions have widely different time courses of progression, making the timing of these discussions challenging. The common issues around end-of-life care include knowing when to start discussions, approaching advance planning, managing common symptoms, diagnosing the dying phase, withdrawing life-sustaining treatments, providing support for family and carers and judging how to involve specialist palliative care teams. End-of-life care needs close collaboration between neurology, specialist palliative care and general practice.<\/jats:p>","DOI":"10.1136\/practneurol-2022-003361","type":"journal-article","created":{"date-parts":[[2022,7,14]],"date-time":"2022-07-14T13:20:10Z","timestamp":1657804810000},"page":"385-391","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":15,"title":["End-of-life care of people with long-term neurological conditions"],"prefix":"10.1136","volume":"22","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4004-2315","authenticated-orcid":false,"given":"Krishnan","family":"Nair","sequence":"first","affiliation":[{"name":"Management, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mark","family":"Lee","sequence":"additional","affiliation":[{"name":"Palliative Medicine, South Tyneside NHS Foundation Trust, South Shields, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Esther","family":"Hobson","sequence":"additional","affiliation":[{"name":"Neurosciences, The University of Sheffield, Sheffield, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"Oliver","sequence":"additional","affiliation":[{"name":"Tizard Centre, University of Kent, Canterbury, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emma","family":"Husbands","sequence":"additional","affiliation":[{"name":"Palliative Medicine, GHNHSFT, Gloucester, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2022,7,14]]},"reference":[{"key":"2025090410361297000_22.5.385.1","unstructured":"Public Health England, National Neurology Intelligence network and National End of life Care Intelligence Network . Deaths associated with neurological conditions in England 2001 to 2014. public health England, London, 2018. Available: https:\/\/assets.publishing.service.gov.uk\/government\/uploads\/system\/uploads\/attachment_data\/file\/683860\/Deaths_associated_with_neurological_conditions_data_analysis_report.pdf [Accessed 21 Dec 2020]."},{"key":"2025090410361297000_22.5.385.2","unstructured":"World Health Organisation . WHO definition of palliative care, 2016. Available: https:\/\/www.who.int\/health-topics\/palliative-care [Accessed 21 Dec 2020]."},{"key":"2025090410361297000_22.5.385.3","first-page":"278","article-title":"White paper on standards and norms for hospice and palliative care in Europe: Part 1","volume":"16","author":"Radbruch","year":"2009","journal-title":"Eur J Palliat Care"},{"key":"2025090410361297000_22.5.385.4","doi-asserted-by":"crossref","first-page":"235","DOI":"10.12968\/bjnn.2008.4.5.29323","article-title":"Addressing palliative and end-of-life care needs in neurology","volume":"4","author":"Sutton","year":"2008","journal-title":"British Journal of Neuroscience Nursing"},{"key":"2025090410361297000_22.5.385.5","unstructured":"Department of Health Long term Conditions NSF Team . The National service framework for long term conditions. London: DH Publications, 2005."},{"key":"2025090410361297000_22.5.385.6","doi-asserted-by":"crossref","first-page":"13","DOI":"10.3109\/17482968.2012.690419","article-title":"The natural history of motor neuron disease: assessing the impact of specialist care","volume":"14","author":"Aridegbe","year":"2013","journal-title":"Amyotroph Lateral Scler Frontotemporal Degener"},{"key":"2025090410361297000_22.5.385.7","doi-asserted-by":"publisher","DOI":"10.7861\/clinmedicine.8-2-186"},{"key":"2025090410361297000_22.5.385.8","doi-asserted-by":"publisher","DOI":"10.1038\/nrneurol.2016.111"},{"key":"2025090410361297000_22.5.385.9","unstructured":"The Gold Standards Framework . Proactive Identification Guidance (PIG), 2016. Available: https:\/\/www.goldstandardsframework.org.uk\/PIG"},{"key":"2025090410361297000_22.5.385.10","unstructured":"The University of Edinburgh . The supportive and palliative care indicators tool (SPICT TM). Available: https:\/\/www.spict.org.uk\/the-spict\/ [Accessed 21 Dec 2020]."},{"key":"2025090410361297000_22.5.385.11","doi-asserted-by":"publisher","DOI":"10.1136\/bmjspcare-2012-000389"},{"key":"2025090410361297000_22.5.385.12","unstructured":"National End of Life Care Programme . End of life care in long term neurological conditions: a framework for implementation, 2010."},{"key":"2025090410361297000_22.5.385.13","doi-asserted-by":"crossref","first-page":"e844","DOI":"10.1200\/JOP.2016.018796","article-title":"REMAP: a framework for goals of care conversations","volume":"13","author":"Childers","year":"2017","journal-title":"J Oncol Pract"},{"key":"2025090410361297000_22.5.385.14","unstructured":"ReSPECT . Resuscitation Council UK. Available: https:\/\/www.resus.org.uk\/respect [Accessed 21 Dec 2020]."},{"key":"2025090410361297000_22.5.385.15","unstructured":"NHSIQ . Lessons learned: implementing an electronic palliative care co-ordination system (EPaCCS). NHS improving quality, 2014. Available: https:\/\/endoflifecareambitions.org.uk\/wp-content\/uploads\/2016\/09\/Lessons-learned-implementing-an-Electronic-Palliative-Care-Co-ordination-System-EPaCCS.pdf [Accessed 21 Dec 2020]."},{"key":"2025090410361297000_22.5.385.16","doi-asserted-by":"publisher","DOI":"10.1089\/jpm.2016.0290"},{"key":"2025090410361297000_22.5.385.17","unstructured":"British Medical Association . Responding to patient requests for assisted dying: guidance for doctors. Available: https:\/\/www.bma.org.uk\/media\/1424\/bma-guidance-on-responding-to-patient-requests-for-assisted-dying-for-doctors.pdf [Accessed 21 Dec 2020]."},{"key":"2025090410361297000_22.5.385.18","unstructured":"Association for Palliative Medicine of Great Britain and Ireland . Association for palliative medicine. withdrawal of assisted ventilation at the Request of a patient with motor neurone disease: guidance for professionals, 2015. Available: https:\/\/apmonline.org\/wp-content\/uploads\/2016\/03\/Guidance-with-logos-updated-210316.pdf [Accessed 21 Dec 2020]."},{"key":"2025090410361297000_22.5.385.19","doi-asserted-by":"publisher","DOI":"10.1136\/bmjspcare-2016-001139"},{"key":"2025090410361297000_22.5.385.20","unstructured":"Royal College of Physicians London,, General Medical Council and British Medical association . Decisions to withdraw clinically assisted nutrition and hydration (CANH) from patients in permanent vegetative state (PVS) or minimally conscious state (mcs) following sudden-onset profound brain injury: interim guidance for health professionals in England and Wales, 2017. Available: https:\/\/www.rcplondon.ac.uk\/file\/8465\/download?token=Uqr8eJgZ [Accessed 25 Mar 2022]."},{"key":"2025090410361297000_22.5.385.21","unstructured":"National Institute for Health and Care Excellence . Care of dying adults in the last days of life. 2015; NICE guideline NG31. Available: https:\/\/www.nice.org.uk\/guidance\/ng31 [Accessed 21 Dec 2020]."},{"key":"2025090410361297000_22.5.385.22","doi-asserted-by":"publisher","DOI":"10.1177\/0269216318815796"},{"key":"2025090410361297000_22.5.385.23","doi-asserted-by":"crossref","first-page":"30","DOI":"10.1111\/ene.12889","article-title":"A consensus review on the development of palliative care for patients with chronic and progressive neurological disease","volume":"23","author":"Oliver","year":"2016","journal-title":"Eur J Neurol"},{"key":"2025090410361297000_22.5.385.24","doi-asserted-by":"crossref","first-page":"292","DOI":"10.1038\/nrneurol.2013.49","article-title":"The role of palliative care in patients with neurological diseases","volume":"9","author":"Borasio","year":"2013","journal-title":"Nat Rev Neurol"},{"key":"2025090410361297000_22.5.385.25","doi-asserted-by":"crossref","first-page":"298","DOI":"10.1177\/082585971403000411","article-title":"Palliative care for people with progressive neurological disease: what is the role?","volume":"30","author":"Oliver","year":"2014","journal-title":"J Palliat Care"},{"key":"2025090410361297000_22.5.385.26","doi-asserted-by":"crossref","first-page":"7","DOI":"10.1016\/j.parkreldis.2016.10.013","article-title":"Palliative care and its emerging role in multiple system atrophy and progressive supranuclear palsy","volume":"34","author":"Wiblin","year":"2017","journal-title":"Parkinsonism Relat Disord"},{"key":"2025090410361297000_22.5.385.27","doi-asserted-by":"crossref","first-page":"675","DOI":"10.1007\/s40261-021-01054-1","article-title":"Idiopathic Parkinson\u2019s Disease at the End of Life: A Retrospective Evaluation of Symptom Prevalence, Pharmacological Symptom Management and Transdermal Rotigotine Dosing","volume":"41","author":"Hindmarsh","year":"2021","journal-title":"Clin Drug Investig"},{"key":"2025090410361297000_22.5.385.28","doi-asserted-by":"crossref","DOI":"10.3389\/fneur.2018.00595","article-title":"Practical management of epileptic seizures and status epilepticus in adult palliative care patients","volume":"9","author":"Gr\u00f6nheit","year":"2018","journal-title":"Front Neurol"}],"container-title":["Practical Neurology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1136\/practneurol-2022-003361","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,9,4]],"date-time":"2025-09-04T17:36:24Z","timestamp":1757007384000},"score":1,"resource":{"primary":{"URL":"https:\/\/pn.bmj.com\/lookup\/doi\/10.1136\/practneurol-2022-003361"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,7,14]]},"references-count":28,"journal-issue":{"issue":"5","published-online":{"date-parts":[[2022,9,26]]},"published-print":{"date-parts":[[2022,10]]}},"alternative-id":["10.1136\/practneurol-2022-003361"],"URL":"https:\/\/doi.org\/10.1136\/practneurol-2022-003361","relation":{},"ISSN":["1474-7758","1474-7766"],"issn-type":[{"value":"1474-7758","type":"print"},{"value":"1474-7766","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,7,14]]}}}