End-of-life care policies in Flemish residential care facilities accommodating persons with intellectual disabilities
Objective This article aims to describe the presence, content and implementation strategies of written policies on end‐of‐life decisions in Flemish residential care facilities (RCFs) accommodating persons with intellectual disabilities (ID), and to describe training, education and quality assessmen...
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| Veröffentlicht in: | Journal of intellectual disability research 2010-12, Vol.54 (12), p.1067-1077 |
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| creator | D'Haene, I. Pasman, H. R. W. Deliens, L. Bilsen, J. Mortier, F. Vander Stichele, R. |
| description | Objective This article aims to describe the presence, content and implementation strategies of written policies on end‐of‐life decisions in Flemish residential care facilities (RCFs) accommodating persons with intellectual disabilities (ID), and to describe training, education and quality assessments of end‐of‐life care.
Methods A cross‐sectional mail survey was conducted among general directors of all RCFs accommodating persons with ID (n = 140) in Flanders, Belgium. Institutions were asked to provide us with a copy of their end‐of‐life care policy documents for content analysis.
Results Of the 140 institutions, 84 (60%) completed the questionnaire and 25 institutions provided 45 policy documents. Presence of policies on specific end‐of‐life decisions with a possible life‐shortening effect lay between 18% (palliative sedation) and 26% (withdrawing or withholding of life‐prolonging treatment). The content analysis showed that the focus in the majority of these policy documents is on palliative care, while end‐of‐life decisions with a possible life‐shortening effect are mentioned but rarely elaborated on. Furthermore, few documents incorporate the distinctive features and needs of persons with ID regarding end‐of‐life care. On the other hand, half of the institutions trained and educated their professional care providers in some aspects of end‐of‐life care while one‐third assessed the satisfaction of residents and families on several of these aspects. However, more than half reported explicitly that they have no plans for such assessments.
Conclusions The presence of end‐of‐life care policies is low in Flemish RCFs and their content is not very specific for persons with ID. |
| doi_str_mv | 10.1111/j.1365-2788.2010.01335.x |
| format | Article |
| fullrecord | <record><control><sourceid>proquest_cross</sourceid><recordid>TN_cdi_proquest_miscellaneous_856047728</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><ericid>EJ977941</ericid><sourcerecordid>856047728</sourcerecordid><originalsourceid>FETCH-LOGICAL-c5815-91ba87e0702ee337433388b89d49cf77f0cc229bbd1174ce82b533731502d0713</originalsourceid><addsrcrecordid>eNqNkktv1DAUhS0EotOBf4BQhIToJoOfsb3oAlUzpVVVJJ4SG8txbqiHTDLYiTr99zhkGCQWFG9s-X7n6Pj6IpQRvCBpvV4vCCtETqVSC4rTLSaMicXuAZodCg_RDOuC57Rg7Agdx7jGGBeEF4_RESVYYk7FDA3Ltsq7Om98DZmzAbJt13jnIWa-zVYNbHy8yQJEX0Hbe9tMUG2db3w_Yta5brPpKtv79lu2hRC7Nma3vr9JDj00Dbh-SLrKR1vuRU_Qo9o2EZ7u9zn6tFp-PHubX707vzh7c5U7oYjINSmtkpCyUgDGJGeMKVUqXXHtailr7ByluiwrQiR3oGgpEsaIwLTCkrA5ejX5bkP3Y4DYm_QclzLZFrohGiUKzKWk6n6S6QITQvn9JOG8oFrqRJ78kySKUcqppDihL_5C190Q2tSb5Ce0okLTBKkJcqGLMUBttsFvbLgzBJtxLszajN9vxu8341yYX3Nhdkn6fO8_lBuoDsLfg5CAl3vARmebOtjW-fiHY1wKmszm6NnEQfDuUF5eaik1Hxt-OpVvfQN3_53PXF68H09Jn096H3vYHfQ2fDeFZFKYL9fnZvX5w_XXFSUp1U9gruo2</addsrcrecordid><sourcetype>Aggregation Database</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>815982592</pqid></control><display><type>article</type><title>End-of-life care policies in Flemish residential care facilities accommodating persons with intellectual disabilities</title><source>Applied Social Sciences Index & Abstracts (ASSIA)</source><source>MEDLINE</source><source>Education Source</source><source>Wiley Online Library Journals Frontfile Complete</source><creator>D'Haene, I. ; Pasman, H. R. W. ; Deliens, L. ; Bilsen, J. ; Mortier, F. ; Vander Stichele, R.</creator><creatorcontrib>D'Haene, I. ; Pasman, H. R. W. ; Deliens, L. ; Bilsen, J. ; Mortier, F. ; Vander Stichele, R.</creatorcontrib><description>Objective This article aims to describe the presence, content and implementation strategies of written policies on end‐of‐life decisions in Flemish residential care facilities (RCFs) accommodating persons with intellectual disabilities (ID), and to describe training, education and quality assessments of end‐of‐life care.
Methods A cross‐sectional mail survey was conducted among general directors of all RCFs accommodating persons with ID (n = 140) in Flanders, Belgium. Institutions were asked to provide us with a copy of their end‐of‐life care policy documents for content analysis.
Results Of the 140 institutions, 84 (60%) completed the questionnaire and 25 institutions provided 45 policy documents. Presence of policies on specific end‐of‐life decisions with a possible life‐shortening effect lay between 18% (palliative sedation) and 26% (withdrawing or withholding of life‐prolonging treatment). The content analysis showed that the focus in the majority of these policy documents is on palliative care, while end‐of‐life decisions with a possible life‐shortening effect are mentioned but rarely elaborated on. Furthermore, few documents incorporate the distinctive features and needs of persons with ID regarding end‐of‐life care. On the other hand, half of the institutions trained and educated their professional care providers in some aspects of end‐of‐life care while one‐third assessed the satisfaction of residents and families on several of these aspects. However, more than half reported explicitly that they have no plans for such assessments.
Conclusions The presence of end‐of‐life care policies is low in Flemish RCFs and their content is not very specific for persons with ID.</description><identifier>ISSN: 0964-2633</identifier><identifier>EISSN: 1365-2788</identifier><identifier>DOI: 10.1111/j.1365-2788.2010.01335.x</identifier><identifier>PMID: 21070425</identifier><identifier>CODEN: JIDREN</identifier><language>eng</language><publisher>Oxford, UK: Blackwell Publishing Ltd</publisher><subject>Assisted living facilities ; Belgium ; Biological and medical sciences ; Case Studies ; Content Analysis ; Cross-Sectional Studies ; Death ; Decision Making ; Drug Therapy ; End of life decisions ; end-of-life care ; Foreign Countries ; Health Personnel ; Humans ; Intellectual disabilities ; Intellectual Disability ; Intellectual Disability - nursing ; Learning disabilities ; Mail Surveys ; Medical sciences ; Medical Services ; Mental health ; Mental Retardation ; Nursing Education ; Organizational Policy ; Palliative care ; Palliative Care - methods ; Palliative Care - standards ; Patient Care Planning - organization & administration ; Patient Care Planning - standards ; policies ; Policy Analysis ; Polls & surveys ; Practice Guidelines as Topic ; Prevention. Health policy. Planification ; Psychology. Psychoanalysis. Psychiatry ; Psychopathology. Psychiatry ; Quality of care ; Questionnaires ; Residential Care ; residential care facilities ; Residential Facilities - organization & administration ; Sedation ; Social psychiatry. Ethnopsychiatry ; Terminal Care - methods ; Terminal Care - standards ; Withholding Treatment - standards</subject><ispartof>Journal of intellectual disability research, 2010-12, Vol.54 (12), p.1067-1077</ispartof><rights>2010 The Authors. Journal of Intellectual Disability Research © 2010 Blackwell Publishing Ltd</rights><rights>2015 INIST-CNRS</rights><rights>2010 The Authors. Journal of Intellectual Disability Research © 2010 Blackwell Publishing Ltd.</rights><rights>Copyright Blackwell Publishing Ltd. Dec 2010</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c5815-91ba87e0702ee337433388b89d49cf77f0cc229bbd1174ce82b533731502d0713</citedby><cites>FETCH-LOGICAL-c5815-91ba87e0702ee337433388b89d49cf77f0cc229bbd1174ce82b533731502d0713</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1111%2Fj.1365-2788.2010.01335.x$$EPDF$$P50$$Gwiley$$H</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1111%2Fj.1365-2788.2010.01335.x$$EHTML$$P50$$Gwiley$$H</linktohtml><link.rule.ids>314,776,780,1411,27901,27902,30976,30977,45550,45551</link.rule.ids><backlink>$$Uhttp://eric.ed.gov/ERICWebPortal/detail?accno=EJ977941$$DView record in ERIC$$Hfree_for_read</backlink><backlink>$$Uhttp://pascal-francis.inist.fr/vibad/index.php?action=getRecordDetail&idt=23475213$$DView record in Pascal Francis$$Hfree_for_read</backlink><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/21070425$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>D'Haene, I.</creatorcontrib><creatorcontrib>Pasman, H. R. W.</creatorcontrib><creatorcontrib>Deliens, L.</creatorcontrib><creatorcontrib>Bilsen, J.</creatorcontrib><creatorcontrib>Mortier, F.</creatorcontrib><creatorcontrib>Vander Stichele, R.</creatorcontrib><title>End-of-life care policies in Flemish residential care facilities accommodating persons with intellectual disabilities</title><title>Journal of intellectual disability research</title><addtitle>J Intellect Disabil Res</addtitle><description>Objective This article aims to describe the presence, content and implementation strategies of written policies on end‐of‐life decisions in Flemish residential care facilities (RCFs) accommodating persons with intellectual disabilities (ID), and to describe training, education and quality assessments of end‐of‐life care.
Methods A cross‐sectional mail survey was conducted among general directors of all RCFs accommodating persons with ID (n = 140) in Flanders, Belgium. Institutions were asked to provide us with a copy of their end‐of‐life care policy documents for content analysis.
Results Of the 140 institutions, 84 (60%) completed the questionnaire and 25 institutions provided 45 policy documents. Presence of policies on specific end‐of‐life decisions with a possible life‐shortening effect lay between 18% (palliative sedation) and 26% (withdrawing or withholding of life‐prolonging treatment). The content analysis showed that the focus in the majority of these policy documents is on palliative care, while end‐of‐life decisions with a possible life‐shortening effect are mentioned but rarely elaborated on. Furthermore, few documents incorporate the distinctive features and needs of persons with ID regarding end‐of‐life care. On the other hand, half of the institutions trained and educated their professional care providers in some aspects of end‐of‐life care while one‐third assessed the satisfaction of residents and families on several of these aspects. However, more than half reported explicitly that they have no plans for such assessments.
Conclusions The presence of end‐of‐life care policies is low in Flemish RCFs and their content is not very specific for persons with ID.</description><subject>Assisted living facilities</subject><subject>Belgium</subject><subject>Biological and medical sciences</subject><subject>Case Studies</subject><subject>Content Analysis</subject><subject>Cross-Sectional Studies</subject><subject>Death</subject><subject>Decision Making</subject><subject>Drug Therapy</subject><subject>End of life decisions</subject><subject>end-of-life care</subject><subject>Foreign Countries</subject><subject>Health Personnel</subject><subject>Humans</subject><subject>Intellectual disabilities</subject><subject>Intellectual Disability</subject><subject>Intellectual Disability - nursing</subject><subject>Learning disabilities</subject><subject>Mail Surveys</subject><subject>Medical sciences</subject><subject>Medical Services</subject><subject>Mental health</subject><subject>Mental Retardation</subject><subject>Nursing Education</subject><subject>Organizational Policy</subject><subject>Palliative care</subject><subject>Palliative Care - methods</subject><subject>Palliative Care - standards</subject><subject>Patient Care Planning - organization & administration</subject><subject>Patient Care Planning - standards</subject><subject>policies</subject><subject>Policy Analysis</subject><subject>Polls & surveys</subject><subject>Practice Guidelines as Topic</subject><subject>Prevention. Health policy. Planification</subject><subject>Psychology. Psychoanalysis. Psychiatry</subject><subject>Psychopathology. Psychiatry</subject><subject>Quality of care</subject><subject>Questionnaires</subject><subject>Residential Care</subject><subject>residential care facilities</subject><subject>Residential Facilities - organization & administration</subject><subject>Sedation</subject><subject>Social psychiatry. Ethnopsychiatry</subject><subject>Terminal Care - methods</subject><subject>Terminal Care - standards</subject><subject>Withholding Treatment - standards</subject><issn>0964-2633</issn><issn>1365-2788</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2010</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>7QJ</sourceid><recordid>eNqNkktv1DAUhS0EotOBf4BQhIToJoOfsb3oAlUzpVVVJJ4SG8txbqiHTDLYiTr99zhkGCQWFG9s-X7n6Pj6IpQRvCBpvV4vCCtETqVSC4rTLSaMicXuAZodCg_RDOuC57Rg7Agdx7jGGBeEF4_RESVYYk7FDA3Ltsq7Om98DZmzAbJt13jnIWa-zVYNbHy8yQJEX0Hbe9tMUG2db3w_Yta5brPpKtv79lu2hRC7Nma3vr9JDj00Dbh-SLrKR1vuRU_Qo9o2EZ7u9zn6tFp-PHubX707vzh7c5U7oYjINSmtkpCyUgDGJGeMKVUqXXHtailr7ByluiwrQiR3oGgpEsaIwLTCkrA5ejX5bkP3Y4DYm_QclzLZFrohGiUKzKWk6n6S6QITQvn9JOG8oFrqRJ78kySKUcqppDihL_5C190Q2tSb5Ce0okLTBKkJcqGLMUBttsFvbLgzBJtxLszajN9vxu8341yYX3Nhdkn6fO8_lBuoDsLfg5CAl3vARmebOtjW-fiHY1wKmszm6NnEQfDuUF5eaik1Hxt-OpVvfQN3_53PXF68H09Jn096H3vYHfQ2fDeFZFKYL9fnZvX5w_XXFSUp1U9gruo2</recordid><startdate>201012</startdate><enddate>201012</enddate><creator>D'Haene, I.</creator><creator>Pasman, H. R. W.</creator><creator>Deliens, L.</creator><creator>Bilsen, J.</creator><creator>Mortier, F.</creator><creator>Vander Stichele, R.</creator><general>Blackwell Publishing Ltd</general><general>Wiley-Blackwell</general><general>Wiley Subscription Services, Inc</general><scope>BSCLL</scope><scope>7SW</scope><scope>BJH</scope><scope>BNH</scope><scope>BNI</scope><scope>BNJ</scope><scope>BNO</scope><scope>ERI</scope><scope>PET</scope><scope>REK</scope><scope>WWN</scope><scope>IQODW</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>7QJ</scope><scope>7TK</scope><scope>7X8</scope><scope>ASE</scope><scope>FPQ</scope><scope>K6X</scope></search><sort><creationdate>201012</creationdate><title>End-of-life care policies in Flemish residential care facilities accommodating persons with intellectual disabilities</title><author>D'Haene, I. ; Pasman, H. R. W. ; Deliens, L. ; Bilsen, J. ; Mortier, F. ; Vander Stichele, R.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c5815-91ba87e0702ee337433388b89d49cf77f0cc229bbd1174ce82b533731502d0713</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2010</creationdate><topic>Assisted living facilities</topic><topic>Belgium</topic><topic>Biological and medical sciences</topic><topic>Case Studies</topic><topic>Content Analysis</topic><topic>Cross-Sectional Studies</topic><topic>Death</topic><topic>Decision Making</topic><topic>Drug Therapy</topic><topic>End of life decisions</topic><topic>end-of-life care</topic><topic>Foreign Countries</topic><topic>Health Personnel</topic><topic>Humans</topic><topic>Intellectual disabilities</topic><topic>Intellectual Disability</topic><topic>Intellectual Disability - nursing</topic><topic>Learning disabilities</topic><topic>Mail Surveys</topic><topic>Medical sciences</topic><topic>Medical Services</topic><topic>Mental health</topic><topic>Mental Retardation</topic><topic>Nursing Education</topic><topic>Organizational Policy</topic><topic>Palliative care</topic><topic>Palliative Care - methods</topic><topic>Palliative Care - standards</topic><topic>Patient Care Planning - organization & administration</topic><topic>Patient Care Planning - standards</topic><topic>policies</topic><topic>Policy Analysis</topic><topic>Polls & surveys</topic><topic>Practice Guidelines as Topic</topic><topic>Prevention. Health policy. Planification</topic><topic>Psychology. Psychoanalysis. Psychiatry</topic><topic>Psychopathology. Psychiatry</topic><topic>Quality of care</topic><topic>Questionnaires</topic><topic>Residential Care</topic><topic>residential care facilities</topic><topic>Residential Facilities - organization & administration</topic><topic>Sedation</topic><topic>Social psychiatry. Ethnopsychiatry</topic><topic>Terminal Care - methods</topic><topic>Terminal Care - standards</topic><topic>Withholding Treatment - standards</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>D'Haene, I.</creatorcontrib><creatorcontrib>Pasman, H. R. W.</creatorcontrib><creatorcontrib>Deliens, L.</creatorcontrib><creatorcontrib>Bilsen, J.</creatorcontrib><creatorcontrib>Mortier, F.</creatorcontrib><creatorcontrib>Vander Stichele, R.</creatorcontrib><collection>Istex</collection><collection>ERIC</collection><collection>ERIC (Ovid)</collection><collection>ERIC</collection><collection>ERIC</collection><collection>ERIC (Legacy Platform)</collection><collection>ERIC( SilverPlatter )</collection><collection>ERIC</collection><collection>ERIC PlusText (Legacy Platform)</collection><collection>Education Resources Information Center (ERIC)</collection><collection>ERIC</collection><collection>Pascal-Francis</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Applied Social Sciences Index & Abstracts (ASSIA)</collection><collection>Neurosciences Abstracts</collection><collection>MEDLINE - Academic</collection><collection>British Nursing Index</collection><collection>British Nursing Index (BNI) (1985 to Present)</collection><collection>British Nursing Index</collection><jtitle>Journal of intellectual disability research</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>D'Haene, I.</au><au>Pasman, H. R. W.</au><au>Deliens, L.</au><au>Bilsen, J.</au><au>Mortier, F.</au><au>Vander Stichele, R.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><ericid>EJ977941</ericid><atitle>End-of-life care policies in Flemish residential care facilities accommodating persons with intellectual disabilities</atitle><jtitle>Journal of intellectual disability research</jtitle><addtitle>J Intellect Disabil Res</addtitle><date>2010-12</date><risdate>2010</risdate><volume>54</volume><issue>12</issue><spage>1067</spage><epage>1077</epage><pages>1067-1077</pages><issn>0964-2633</issn><eissn>1365-2788</eissn><coden>JIDREN</coden><abstract>Objective This article aims to describe the presence, content and implementation strategies of written policies on end‐of‐life decisions in Flemish residential care facilities (RCFs) accommodating persons with intellectual disabilities (ID), and to describe training, education and quality assessments of end‐of‐life care.
Methods A cross‐sectional mail survey was conducted among general directors of all RCFs accommodating persons with ID (n = 140) in Flanders, Belgium. Institutions were asked to provide us with a copy of their end‐of‐life care policy documents for content analysis.
Results Of the 140 institutions, 84 (60%) completed the questionnaire and 25 institutions provided 45 policy documents. Presence of policies on specific end‐of‐life decisions with a possible life‐shortening effect lay between 18% (palliative sedation) and 26% (withdrawing or withholding of life‐prolonging treatment). The content analysis showed that the focus in the majority of these policy documents is on palliative care, while end‐of‐life decisions with a possible life‐shortening effect are mentioned but rarely elaborated on. Furthermore, few documents incorporate the distinctive features and needs of persons with ID regarding end‐of‐life care. On the other hand, half of the institutions trained and educated their professional care providers in some aspects of end‐of‐life care while one‐third assessed the satisfaction of residents and families on several of these aspects. However, more than half reported explicitly that they have no plans for such assessments.
Conclusions The presence of end‐of‐life care policies is low in Flemish RCFs and their content is not very specific for persons with ID.</abstract><cop>Oxford, UK</cop><pub>Blackwell Publishing Ltd</pub><pmid>21070425</pmid><doi>10.1111/j.1365-2788.2010.01335.x</doi><tpages>11</tpages></addata></record> |
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| ispartof | Journal of intellectual disability research, 2010-12, Vol.54 (12), p.1067-1077 |
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| subjects | Assisted living facilities Belgium Biological and medical sciences Case Studies Content Analysis Cross-Sectional Studies Death Decision Making Drug Therapy End of life decisions end-of-life care Foreign Countries Health Personnel Humans Intellectual disabilities Intellectual Disability Intellectual Disability - nursing Learning disabilities Mail Surveys Medical sciences Medical Services Mental health Mental Retardation Nursing Education Organizational Policy Palliative care Palliative Care - methods Palliative Care - standards Patient Care Planning - organization & administration Patient Care Planning - standards policies Policy Analysis Polls & surveys Practice Guidelines as Topic Prevention. Health policy. Planification Psychology. Psychoanalysis. Psychiatry Psychopathology. Psychiatry Quality of care Questionnaires Residential Care residential care facilities Residential Facilities - organization & administration Sedation Social psychiatry. Ethnopsychiatry Terminal Care - methods Terminal Care - standards Withholding Treatment - standards |
| title | End-of-life care policies in Flemish residential care facilities accommodating persons with intellectual disabilities |
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