End-of-life care for patients with prolonged disorders of consciousness following withdrawal of life-sustaining treatment: Experience and lessons from an 8-year cohort
National guidelines provide advice for end-of-life care in patients with prolonged disorders of consciousness (PDOC). Following a Supreme Court judgment in July 2018, updated guidelines set out requirements to ensure that decisions to withdraw clinically assisted nutrition and hydration (CANH) are m...
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| Veröffentlicht in: | Clinical medicine (London, England) England), 2022-11, Vol.22 (6), p.559-565 |
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| creator | Turner-Stokes, Lynne Thakur, Verity Dungca, Chris Clare, Charlotte Alfonso, Ejessie |
| description | National guidelines provide advice for end-of-life care in patients with prolonged disorders of consciousness (PDOC). Following a Supreme Court judgment in July 2018, updated guidelines set out requirements to ensure that decisions to withdraw clinically assisted nutrition and hydration (CANH) are made responsibly in the absence of a mandatory application to the court.
This retrospective 8-year cohort analysis of prospectively collected clinical data examines the experience and lessons learned from implementing the guidelines in the 80 PDOC patients who have died in one tertiary centre since 2014. It also reports performance against the standards for elective withdrawal of CANH outside of court since July 2018.
CANH was withdrawn in 39/80 (49%) of the patients, over half of whom were already imminently dying. Even in a centre where patients are referred for this purpose, elective CANH withdrawal is comparatively rare (just 14 patients since 2018). The requirements were met in all cases. |
| doi_str_mv | 10.7861/clinmed.2022-0255 |
| format | Article |
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This retrospective 8-year cohort analysis of prospectively collected clinical data examines the experience and lessons learned from implementing the guidelines in the 80 PDOC patients who have died in one tertiary centre since 2014. It also reports performance against the standards for elective withdrawal of CANH outside of court since July 2018.
CANH was withdrawn in 39/80 (49%) of the patients, over half of whom were already imminently dying. Even in a centre where patients are referred for this purpose, elective CANH withdrawal is comparatively rare (just 14 patients since 2018). The requirements were met in all cases.</description><identifier>ISSN: 1470-2118</identifier><identifier>EISSN: 1473-4893</identifier><identifier>DOI: 10.7861/clinmed.2022-0255</identifier><identifier>PMID: 36427896</identifier><language>eng</language><publisher>England: Elsevier Ltd</publisher><subject>Brain research ; Cohort analysis ; Cohort Studies ; Consciousness ; Decision making ; disorders of consciousness ; end-of-life care ; Humans ; Hydration ; minimally conscious state ; Mortality ; Original Research ; Palliative care ; Patients ; Persistent Vegetative State ; Physiology ; Research ethics ; Retrospective Studies ; Terminal Care ; Trauma ; Traumatic brain injury ; Unconsciousness ; vegetative state ; Withholding Treatment</subject><ispartof>Clinical medicine (London, England), 2022-11, Vol.22 (6), p.559-565</ispartof><rights>2022 © 2022 THE AUTHORS. Published by Elsevier Limited on behalf of the Royal College of Physicians.</rights><rights>Royal College of Physicians 2022. All rights reserved.</rights><rights>Copyright Royal College of Physicians Nov 2022</rights><rights>Royal College of Physicians 2022. All rights reserved. 2022</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><cites>FETCH-LOGICAL-c388t-9f15d82baf42a7e990176ce2a21b8865480466c1d192a081dbb2a3efb471f82d3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC9761429/pdf/$$EPDF$$P50$$Gpubmedcentral$$H</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC9761429/$$EHTML$$P50$$Gpubmedcentral$$H</linktohtml><link.rule.ids>230,314,723,776,780,881,27903,27904,53769,53771</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/36427896$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Turner-Stokes, Lynne</creatorcontrib><creatorcontrib>Thakur, Verity</creatorcontrib><creatorcontrib>Dungca, Chris</creatorcontrib><creatorcontrib>Clare, Charlotte</creatorcontrib><creatorcontrib>Alfonso, Ejessie</creatorcontrib><title>End-of-life care for patients with prolonged disorders of consciousness following withdrawal of life-sustaining treatment: Experience and lessons from an 8-year cohort</title><title>Clinical medicine (London, England)</title><addtitle>Clin Med (Lond)</addtitle><description>National guidelines provide advice for end-of-life care in patients with prolonged disorders of consciousness (PDOC). Following a Supreme Court judgment in July 2018, updated guidelines set out requirements to ensure that decisions to withdraw clinically assisted nutrition and hydration (CANH) are made responsibly in the absence of a mandatory application to the court.
This retrospective 8-year cohort analysis of prospectively collected clinical data examines the experience and lessons learned from implementing the guidelines in the 80 PDOC patients who have died in one tertiary centre since 2014. It also reports performance against the standards for elective withdrawal of CANH outside of court since July 2018.
CANH was withdrawn in 39/80 (49%) of the patients, over half of whom were already imminently dying. Even in a centre where patients are referred for this purpose, elective CANH withdrawal is comparatively rare (just 14 patients since 2018). The requirements were met in all cases.</description><subject>Brain research</subject><subject>Cohort analysis</subject><subject>Cohort Studies</subject><subject>Consciousness</subject><subject>Decision making</subject><subject>disorders of consciousness</subject><subject>end-of-life care</subject><subject>Humans</subject><subject>Hydration</subject><subject>minimally conscious state</subject><subject>Mortality</subject><subject>Original Research</subject><subject>Palliative care</subject><subject>Patients</subject><subject>Persistent Vegetative State</subject><subject>Physiology</subject><subject>Research ethics</subject><subject>Retrospective Studies</subject><subject>Terminal Care</subject><subject>Trauma</subject><subject>Traumatic brain injury</subject><subject>Unconsciousness</subject><subject>vegetative state</subject><subject>Withholding Treatment</subject><issn>1470-2118</issn><issn>1473-4893</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2022</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>ABUWG</sourceid><sourceid>AFKRA</sourceid><sourceid>BENPR</sourceid><sourceid>CCPQU</sourceid><recordid>eNp9kc-OFCEQxjtG466rD-DFkHhmBZruBk1MzGb8k2ziRc-EhmKGTQ-0QO-4T-RrSu-MG714okJ9368q9TXNS0ouB9HTN2byYQ_2khHGMGFd96g5p3xoMReyfXxfE8woFWfNs5xvCKEdl_3T5qztORuE7M-bX5tgcXR48g6Q0QmQiwnNungIJaODLzs0pzjFsAWLrM8xWUgZRYdMDNn4uOQAOVfbNMWDD9t7j036oKdVtYJxXnLRPqzdkkCXfYW_RZufM6Q6xwDSwaKpYioSuRT39QMJfAc61TG7mMrz5onTU4YXp_ei-f5x8-3qM77--unL1YdrbFohCpaOdlawUTvO9ABSEjr0BphmdBSi77ggvO8NtVQyTQS148h0C27kA3WC2faieX_kzstYT2vqoklPak5-r9OditqrfzvB79Q23io59JQzWQGvT4AUfyyQi7qJSwp1Z8UGLqgUgnZVRY8qk2LOCdzDBErUmq06ZavWbNWabfW8-nu1B8efMKvg3VEA9UC3HpKq-azntT6BKcpG_x_8b4bRuzA</recordid><startdate>202211</startdate><enddate>202211</enddate><creator>Turner-Stokes, Lynne</creator><creator>Thakur, Verity</creator><creator>Dungca, Chris</creator><creator>Clare, Charlotte</creator><creator>Alfonso, Ejessie</creator><general>Elsevier Ltd</general><general>Royal College of Physicians</general><scope>6I.</scope><scope>AAFTH</scope><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>3V.</scope><scope>4T-</scope><scope>4U-</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>8AO</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>BENPR</scope><scope>CCPQU</scope><scope>EHMNL</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>K9.</scope><scope>M0S</scope><scope>M1P</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>5PM</scope></search><sort><creationdate>202211</creationdate><title>End-of-life care for patients with prolonged disorders of consciousness following withdrawal of life-sustaining treatment: Experience and lessons from an 8-year cohort</title><author>Turner-Stokes, Lynne ; Thakur, Verity ; Dungca, Chris ; Clare, Charlotte ; Alfonso, Ejessie</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c388t-9f15d82baf42a7e990176ce2a21b8865480466c1d192a081dbb2a3efb471f82d3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2022</creationdate><topic>Brain research</topic><topic>Cohort analysis</topic><topic>Cohort Studies</topic><topic>Consciousness</topic><topic>Decision making</topic><topic>disorders of consciousness</topic><topic>end-of-life care</topic><topic>Humans</topic><topic>Hydration</topic><topic>minimally conscious state</topic><topic>Mortality</topic><topic>Original Research</topic><topic>Palliative care</topic><topic>Patients</topic><topic>Persistent Vegetative State</topic><topic>Physiology</topic><topic>Research ethics</topic><topic>Retrospective Studies</topic><topic>Terminal Care</topic><topic>Trauma</topic><topic>Traumatic brain injury</topic><topic>Unconsciousness</topic><topic>vegetative state</topic><topic>Withholding Treatment</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Turner-Stokes, Lynne</creatorcontrib><creatorcontrib>Thakur, Verity</creatorcontrib><creatorcontrib>Dungca, Chris</creatorcontrib><creatorcontrib>Clare, Charlotte</creatorcontrib><creatorcontrib>Alfonso, Ejessie</creatorcontrib><collection>ScienceDirect Open Access Titles</collection><collection>Elsevier:ScienceDirect:Open Access</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Central (Corporate)</collection><collection>Docstoc</collection><collection>University Readers</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Medical Database (Alumni Edition)</collection><collection>ProQuest Pharma Collection</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>ProQuest Central (Alumni Edition)</collection><collection>ProQuest Central UK/Ireland</collection><collection>ProQuest Central</collection><collection>ProQuest One Community College</collection><collection>UK & Ireland Database</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>ProQuest Central China</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Clinical medicine (London, England)</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Turner-Stokes, Lynne</au><au>Thakur, Verity</au><au>Dungca, Chris</au><au>Clare, Charlotte</au><au>Alfonso, Ejessie</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>End-of-life care for patients with prolonged disorders of consciousness following withdrawal of life-sustaining treatment: Experience and lessons from an 8-year cohort</atitle><jtitle>Clinical medicine (London, England)</jtitle><addtitle>Clin Med (Lond)</addtitle><date>2022-11</date><risdate>2022</risdate><volume>22</volume><issue>6</issue><spage>559</spage><epage>565</epage><pages>559-565</pages><issn>1470-2118</issn><eissn>1473-4893</eissn><abstract>National guidelines provide advice for end-of-life care in patients with prolonged disorders of consciousness (PDOC). Following a Supreme Court judgment in July 2018, updated guidelines set out requirements to ensure that decisions to withdraw clinically assisted nutrition and hydration (CANH) are made responsibly in the absence of a mandatory application to the court.
This retrospective 8-year cohort analysis of prospectively collected clinical data examines the experience and lessons learned from implementing the guidelines in the 80 PDOC patients who have died in one tertiary centre since 2014. It also reports performance against the standards for elective withdrawal of CANH outside of court since July 2018.
CANH was withdrawn in 39/80 (49%) of the patients, over half of whom were already imminently dying. Even in a centre where patients are referred for this purpose, elective CANH withdrawal is comparatively rare (just 14 patients since 2018). The requirements were met in all cases.</abstract><cop>England</cop><pub>Elsevier Ltd</pub><pmid>36427896</pmid><doi>10.7861/clinmed.2022-0255</doi><tpages>7</tpages><oa>free_for_read</oa></addata></record> |
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| ispartof | Clinical medicine (London, England), 2022-11, Vol.22 (6), p.559-565 |
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| source | MEDLINE; Elektronische Zeitschriftenbibliothek - Frei zugängliche E-Journals; PubMed Central; Alma/SFX Local Collection |
| subjects | Brain research Cohort analysis Cohort Studies Consciousness Decision making disorders of consciousness end-of-life care Humans Hydration minimally conscious state Mortality Original Research Palliative care Patients Persistent Vegetative State Physiology Research ethics Retrospective Studies Terminal Care Trauma Traumatic brain injury Unconsciousness vegetative state Withholding Treatment |
| title | End-of-life care for patients with prolonged disorders of consciousness following withdrawal of life-sustaining treatment: Experience and lessons from an 8-year cohort |
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