Limitations in the approach health caregivers can take in end‐of‐life care decisions
Background In the terminal stages of neuro‐metabolic diseases, parents can begin to experience a sense of loss even before the child dies, and might accept death prematurely. Cases A 2.5‐year‐old female patient with Sandoff Disease (diagnosed at 9 months of age), and a 17‐month‐old male Krabbe patie...
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| Veröffentlicht in: | Child : care, health & development health & development, 2015-11, Vol.41 (6), p.1242-1245 |
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| container_title | Child : care, health & development |
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| creator | Bülbül, S. Sürücü, M. Karavaizoğlu, C. Eke, M. |
| description | Background
In the terminal stages of neuro‐metabolic diseases, parents can begin to experience a sense of loss even before the child dies, and might accept death prematurely.
Cases
A 2.5‐year‐old female patient with Sandoff Disease (diagnosed at 9 months of age), and a 17‐month‐old male Krabbe patient (diagnosed at 5 months of age) were admitted to the hospital with hypernatraemic dehydration and bronchopneumonia, respectively, within 10 days of each other. Both patients developed respiratory arrest short after admission and were supported with mechanical ventilation. Both families gave written consent to end life support, but their wishes could not be accepted according to Turkish law.
Conclusions
Specialists are expected to communicate well with families and give continuous care while respecting the opinions of patients' families on the timing of the withdrawal of life support. However, ethical and legal regulations on the conduct of health care professionals in these circumstances are unclear in Turkey and should be developed rapidly. |
| doi_str_mv | 10.1111/cch.12171 |
| format | Article |
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In the terminal stages of neuro‐metabolic diseases, parents can begin to experience a sense of loss even before the child dies, and might accept death prematurely.
Cases
A 2.5‐year‐old female patient with Sandoff Disease (diagnosed at 9 months of age), and a 17‐month‐old male Krabbe patient (diagnosed at 5 months of age) were admitted to the hospital with hypernatraemic dehydration and bronchopneumonia, respectively, within 10 days of each other. Both patients developed respiratory arrest short after admission and were supported with mechanical ventilation. Both families gave written consent to end life support, but their wishes could not be accepted according to Turkish law.
Conclusions
Specialists are expected to communicate well with families and give continuous care while respecting the opinions of patients' families on the timing of the withdrawal of life support. However, ethical and legal regulations on the conduct of health care professionals in these circumstances are unclear in Turkey and should be developed rapidly.</description><identifier>ISSN: 0305-1862</identifier><identifier>EISSN: 1365-2214</identifier><identifier>DOI: 10.1111/cch.12171</identifier><identifier>PMID: 25039488</identifier><identifier>CODEN: CCHDDH</identifier><language>eng</language><publisher>England: Blackwell Publishing Ltd</publisher><subject>Caregivers ; Caregivers - psychology ; Child, Hospitalized ; Child, Preschool ; Consanguinity ; Consent ; Death & dying ; Decision Making ; Dehydration ; End of life decisions ; euthanasia ; Families & family life ; Family (Sociological Unit) ; Fatal Outcome ; Female ; health care provider ; Hospitalization ; Humans ; Infant ; Krabbe ; Leukodystrophy, Globoid Cell - nursing ; Life support systems ; Life sustaining treatment ; Male ; Mechanical ventilation ; Medical personnel ; Metabolic diseases ; Metabolic disorders ; Palliative care ; Physicians ; Premature babies ; Regulation ; Relatives ; Sandhoff ; Sandhoff Disease - nursing ; Specialists ; Terminal Care ; Timing ; Turkey ; Ventilation ; Withholding Treatment - legislation & jurisprudence</subject><ispartof>Child : care, health & development, 2015-11, Vol.41 (6), p.1242-1245</ispartof><rights>2014 John Wiley & Sons Ltd</rights><rights>2014 John Wiley & Sons Ltd.</rights><rights>Copyright © 2015 John Wiley & Sons Ltd</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c4931-f77586909bcf79d83d635d884c8de81a32921db842f8e7d6d3be647f79c727873</citedby><cites>FETCH-LOGICAL-c4931-f77586909bcf79d83d635d884c8de81a32921db842f8e7d6d3be647f79c727873</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%2Fcch.12171$$EPDF$$P50$$Gwiley$$H</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1111%2Fcch.12171$$EHTML$$P50$$Gwiley$$H</linktohtml><link.rule.ids>314,776,780,1411,27901,27902,30976,45550,45551</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/25039488$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Bülbül, S.</creatorcontrib><creatorcontrib>Sürücü, M.</creatorcontrib><creatorcontrib>Karavaizoğlu, C.</creatorcontrib><creatorcontrib>Eke, M.</creatorcontrib><title>Limitations in the approach health caregivers can take in end‐of‐life care decisions</title><title>Child : care, health & development</title><addtitle>Child Care Health Dev</addtitle><description>Background
In the terminal stages of neuro‐metabolic diseases, parents can begin to experience a sense of loss even before the child dies, and might accept death prematurely.
Cases
A 2.5‐year‐old female patient with Sandoff Disease (diagnosed at 9 months of age), and a 17‐month‐old male Krabbe patient (diagnosed at 5 months of age) were admitted to the hospital with hypernatraemic dehydration and bronchopneumonia, respectively, within 10 days of each other. Both patients developed respiratory arrest short after admission and were supported with mechanical ventilation. Both families gave written consent to end life support, but their wishes could not be accepted according to Turkish law.
Conclusions
Specialists are expected to communicate well with families and give continuous care while respecting the opinions of patients' families on the timing of the withdrawal of life support. However, ethical and legal regulations on the conduct of health care professionals in these circumstances are unclear in Turkey and should be developed rapidly.</description><subject>Caregivers</subject><subject>Caregivers - psychology</subject><subject>Child, Hospitalized</subject><subject>Child, Preschool</subject><subject>Consanguinity</subject><subject>Consent</subject><subject>Death & dying</subject><subject>Decision Making</subject><subject>Dehydration</subject><subject>End of life decisions</subject><subject>euthanasia</subject><subject>Families & family life</subject><subject>Family (Sociological Unit)</subject><subject>Fatal Outcome</subject><subject>Female</subject><subject>health care provider</subject><subject>Hospitalization</subject><subject>Humans</subject><subject>Infant</subject><subject>Krabbe</subject><subject>Leukodystrophy, Globoid Cell - nursing</subject><subject>Life support systems</subject><subject>Life sustaining treatment</subject><subject>Male</subject><subject>Mechanical ventilation</subject><subject>Medical personnel</subject><subject>Metabolic diseases</subject><subject>Metabolic disorders</subject><subject>Palliative care</subject><subject>Physicians</subject><subject>Premature babies</subject><subject>Regulation</subject><subject>Relatives</subject><subject>Sandhoff</subject><subject>Sandhoff Disease - nursing</subject><subject>Specialists</subject><subject>Terminal Care</subject><subject>Timing</subject><subject>Turkey</subject><subject>Ventilation</subject><subject>Withholding Treatment - legislation & jurisprudence</subject><issn>0305-1862</issn><issn>1365-2214</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2015</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>7QJ</sourceid><recordid>eNp10L1OwzAUBWALgWgpDLwAisQCQ1r_JLYzoggoUiUWkNgi174hLmlS4gTUjUfgGXkS3KYwIHEH-w6fjq4OQqcEj4mfidbFmFAiyB4aEsbjkFIS7aMhZjgOieR0gI6cW2A_PMKHaEBjzJJIyiF6mtmlbVVr68oFtgraAgK1WjW10kVQgCrbItCqgWf7Bo3zqyfqBTYUKvP18Vnn_iltDlsWGNDWbcKO0UGuSgcnu3-EHm-uH9JpOLu_vUuvZqGOEkbCXIhY8gQnc52LxEhmOIuNlJGWBiRRjCaUmLmMaC5BGG7YHHgkvNWCCinYCF30uf7m1w5cmy2t01CWqoK6cxkRHEvJMWaenv-hi7prKn-dV7EgFHNCvLrslW5q5xrIs1Vjl6pZZwRnm7ozX3e2rdvbs11iN1-C-ZU__Xow6cG7LWH9f1KWptM-8hsFoIln</recordid><startdate>201511</startdate><enddate>201511</enddate><creator>Bülbül, S.</creator><creator>Sürücü, M.</creator><creator>Karavaizoğlu, C.</creator><creator>Eke, M.</creator><general>Blackwell Publishing Ltd</general><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>7X8</scope></search><sort><creationdate>201511</creationdate><title>Limitations in the approach health caregivers can take in end‐of‐life care decisions</title><author>Bülbül, S. ; Sürücü, M. ; Karavaizoğlu, C. ; Eke, M.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c4931-f77586909bcf79d83d635d884c8de81a32921db842f8e7d6d3be647f79c727873</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2015</creationdate><topic>Caregivers</topic><topic>Caregivers - psychology</topic><topic>Child, Hospitalized</topic><topic>Child, Preschool</topic><topic>Consanguinity</topic><topic>Consent</topic><topic>Death & dying</topic><topic>Decision Making</topic><topic>Dehydration</topic><topic>End of life decisions</topic><topic>euthanasia</topic><topic>Families & family life</topic><topic>Family (Sociological Unit)</topic><topic>Fatal Outcome</topic><topic>Female</topic><topic>health care provider</topic><topic>Hospitalization</topic><topic>Humans</topic><topic>Infant</topic><topic>Krabbe</topic><topic>Leukodystrophy, Globoid Cell - nursing</topic><topic>Life support systems</topic><topic>Life sustaining treatment</topic><topic>Male</topic><topic>Mechanical ventilation</topic><topic>Medical personnel</topic><topic>Metabolic diseases</topic><topic>Metabolic disorders</topic><topic>Palliative care</topic><topic>Physicians</topic><topic>Premature babies</topic><topic>Regulation</topic><topic>Relatives</topic><topic>Sandhoff</topic><topic>Sandhoff Disease - nursing</topic><topic>Specialists</topic><topic>Terminal Care</topic><topic>Timing</topic><topic>Turkey</topic><topic>Ventilation</topic><topic>Withholding Treatment - legislation & jurisprudence</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Bülbül, S.</creatorcontrib><creatorcontrib>Sürücü, M.</creatorcontrib><creatorcontrib>Karavaizoğlu, C.</creatorcontrib><creatorcontrib>Eke, M.</creatorcontrib><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>MEDLINE - Academic</collection><jtitle>Child : care, health & development</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Bülbül, S.</au><au>Sürücü, M.</au><au>Karavaizoğlu, C.</au><au>Eke, M.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Limitations in the approach health caregivers can take in end‐of‐life care decisions</atitle><jtitle>Child : care, health & development</jtitle><addtitle>Child Care Health Dev</addtitle><date>2015-11</date><risdate>2015</risdate><volume>41</volume><issue>6</issue><spage>1242</spage><epage>1245</epage><pages>1242-1245</pages><issn>0305-1862</issn><eissn>1365-2214</eissn><coden>CCHDDH</coden><abstract>Background
In the terminal stages of neuro‐metabolic diseases, parents can begin to experience a sense of loss even before the child dies, and might accept death prematurely.
Cases
A 2.5‐year‐old female patient with Sandoff Disease (diagnosed at 9 months of age), and a 17‐month‐old male Krabbe patient (diagnosed at 5 months of age) were admitted to the hospital with hypernatraemic dehydration and bronchopneumonia, respectively, within 10 days of each other. Both patients developed respiratory arrest short after admission and were supported with mechanical ventilation. Both families gave written consent to end life support, but their wishes could not be accepted according to Turkish law.
Conclusions
Specialists are expected to communicate well with families and give continuous care while respecting the opinions of patients' families on the timing of the withdrawal of life support. However, ethical and legal regulations on the conduct of health care professionals in these circumstances are unclear in Turkey and should be developed rapidly.</abstract><cop>England</cop><pub>Blackwell Publishing Ltd</pub><pmid>25039488</pmid><doi>10.1111/cch.12171</doi><tpages>4</tpages></addata></record> |
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| source | Applied Social Sciences Index & Abstracts (ASSIA); MEDLINE; Wiley Online Library Journals Frontfile Complete; EBSCOhost Education Source |
| subjects | Caregivers Caregivers - psychology Child, Hospitalized Child, Preschool Consanguinity Consent Death & dying Decision Making Dehydration End of life decisions euthanasia Families & family life Family (Sociological Unit) Fatal Outcome Female health care provider Hospitalization Humans Infant Krabbe Leukodystrophy, Globoid Cell - nursing Life support systems Life sustaining treatment Male Mechanical ventilation Medical personnel Metabolic diseases Metabolic disorders Palliative care Physicians Premature babies Regulation Relatives Sandhoff Sandhoff Disease - nursing Specialists Terminal Care Timing Turkey Ventilation Withholding Treatment - legislation & jurisprudence |
| title | Limitations in the approach health caregivers can take in end‐of‐life care decisions |
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