Beyond Advance Directives: Addressing Communication Gaps and Caregiving Challenges at Life's End
The premise of advance directives and care planning is to help people articulate and document their wishes so surrogate decision-makers and providers can honor them. However, beyond the completion of such a document, underlying challenges are often unaddressed The overall purpose of the study was to...
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Veröffentlicht in: | Journal of pain and symptom management 2022-03, Vol.63 (3), p.415-422 |
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description | The premise of advance directives and care planning is to help people articulate and document their wishes so surrogate decision-makers and providers can honor them. However, beyond the completion of such a document, underlying challenges are often unaddressed
The overall purpose of the study was to investigate how communication, including but not limited to the completion of advance directives, and caregiving influenced family caregivers’ experiences. Communication gaps and caregiving challenges that were unaddressed by advance directives are presented.
Non-dominant simultaneous mixed-methods (QUAL-QUAN) were used to explore how end-of-life events influenced family caregivers. In-depth interviews were conducted with 108 caregivers about 4 months following the death of a family member who was in hospice care.
A majority (n = 90; 84.9%) had specific wishes about end-of-life treatment. Patients had a completed: Health Care Proxy-101 (93.3%); Living Will–43 (39.8%); Do Not Resuscitate orders (DNR)–82 (75.9%) and Medical Orders for Life Sustaining Treatment–40 (37%). A majority (n = 83; 76.9%) of caregivers said that they had “enough” or “just the right amount” of information to prepare for the patients’ death. Five themes illustrated caregivers’ experiences: Family Conflict; Patient/Family-Provider Conflict; Uncertainty, Caregiving Realities; Awareness-Avoidance of Dying.
A majority of had an advance directive, yet caregivers expressed feeling unprepared for decision-making, caregiving and discussing it with the dying person. The advance directive and care planning process fell short of providing needed communication, knowledge and preparation; it can be an opportunity for teaching, learning, preparing and supporting families at life's end. |
doi_str_mv | 10.1016/j.jpainsymman.2021.09.020 |
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The overall purpose of the study was to investigate how communication, including but not limited to the completion of advance directives, and caregiving influenced family caregivers’ experiences. Communication gaps and caregiving challenges that were unaddressed by advance directives are presented.
Non-dominant simultaneous mixed-methods (QUAL-QUAN) were used to explore how end-of-life events influenced family caregivers. In-depth interviews were conducted with 108 caregivers about 4 months following the death of a family member who was in hospice care.
A majority (n = 90; 84.9%) had specific wishes about end-of-life treatment. Patients had a completed: Health Care Proxy-101 (93.3%); Living Will–43 (39.8%); Do Not Resuscitate orders (DNR)–82 (75.9%) and Medical Orders for Life Sustaining Treatment–40 (37%). A majority (n = 83; 76.9%) of caregivers said that they had “enough” or “just the right amount” of information to prepare for the patients’ death. Five themes illustrated caregivers’ experiences: Family Conflict; Patient/Family-Provider Conflict; Uncertainty, Caregiving Realities; Awareness-Avoidance of Dying.
A majority of had an advance directive, yet caregivers expressed feeling unprepared for decision-making, caregiving and discussing it with the dying person. The advance directive and care planning process fell short of providing needed communication, knowledge and preparation; it can be an opportunity for teaching, learning, preparing and supporting families at life's end.</description><identifier>ISSN: 0885-3924</identifier><identifier>EISSN: 1873-6513</identifier><identifier>DOI: 10.1016/j.jpainsymman.2021.09.020</identifier><identifier>PMID: 34662723</identifier><language>eng</language><publisher>United States: Elsevier Inc</publisher><subject>Advance Care Planning ; Advance Directives ; Care plans ; Caregivers ; Caregiving ; Clinical decision making ; Communication ; Death ; Death & dying ; Decision makers ; Decision Making ; Do not resuscitate orders ; End of life decisions ; end-of-life caregiving ; Family conflict ; Health care ; hospice ; Hospice care ; Humans ; Life events ; Life sustaining treatment ; Living Wills ; Resuscitation Orders ; Right to die ; Teaching ; Terminal Care ; Uncertainty</subject><ispartof>Journal of pain and symptom management, 2022-03, Vol.63 (3), p.415-422</ispartof><rights>2021 American Academy of Hospice and Palliative Medicine</rights><rights>Copyright © 2021 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.</rights><rights>Copyright Elsevier Limited Mar 2022</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c405t-9655a9b9d52e763dd96421c74aec8a24c65e2f1068be13850d78da5ed372ea373</citedby><cites>FETCH-LOGICAL-c405t-9655a9b9d52e763dd96421c74aec8a24c65e2f1068be13850d78da5ed372ea373</cites><orcidid>0000-0001-8325-2147</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktohtml>$$Uhttps://dx.doi.org/10.1016/j.jpainsymman.2021.09.020$$EHTML$$P50$$Gelsevier$$H</linktohtml><link.rule.ids>315,782,786,3552,27931,27932,31006,46002</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/34662723$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Waldrop, Deborah P.</creatorcontrib><creatorcontrib>McGinley, Jacqueline M.</creatorcontrib><title>Beyond Advance Directives: Addressing Communication Gaps and Caregiving Challenges at Life's End</title><title>Journal of pain and symptom management</title><addtitle>J Pain Symptom Manage</addtitle><description>The premise of advance directives and care planning is to help people articulate and document their wishes so surrogate decision-makers and providers can honor them. However, beyond the completion of such a document, underlying challenges are often unaddressed
The overall purpose of the study was to investigate how communication, including but not limited to the completion of advance directives, and caregiving influenced family caregivers’ experiences. Communication gaps and caregiving challenges that were unaddressed by advance directives are presented.
Non-dominant simultaneous mixed-methods (QUAL-QUAN) were used to explore how end-of-life events influenced family caregivers. In-depth interviews were conducted with 108 caregivers about 4 months following the death of a family member who was in hospice care.
A majority (n = 90; 84.9%) had specific wishes about end-of-life treatment. Patients had a completed: Health Care Proxy-101 (93.3%); Living Will–43 (39.8%); Do Not Resuscitate orders (DNR)–82 (75.9%) and Medical Orders for Life Sustaining Treatment–40 (37%). A majority (n = 83; 76.9%) of caregivers said that they had “enough” or “just the right amount” of information to prepare for the patients’ death. Five themes illustrated caregivers’ experiences: Family Conflict; Patient/Family-Provider Conflict; Uncertainty, Caregiving Realities; Awareness-Avoidance of Dying.
A majority of had an advance directive, yet caregivers expressed feeling unprepared for decision-making, caregiving and discussing it with the dying person. The advance directive and care planning process fell short of providing needed communication, knowledge and preparation; it can be an opportunity for teaching, learning, preparing and supporting families at life's end.</description><subject>Advance Care Planning</subject><subject>Advance Directives</subject><subject>Care plans</subject><subject>Caregivers</subject><subject>Caregiving</subject><subject>Clinical decision making</subject><subject>Communication</subject><subject>Death</subject><subject>Death & dying</subject><subject>Decision makers</subject><subject>Decision Making</subject><subject>Do not resuscitate orders</subject><subject>End of life decisions</subject><subject>end-of-life caregiving</subject><subject>Family conflict</subject><subject>Health care</subject><subject>hospice</subject><subject>Hospice care</subject><subject>Humans</subject><subject>Life events</subject><subject>Life sustaining treatment</subject><subject>Living Wills</subject><subject>Resuscitation Orders</subject><subject>Right to die</subject><subject>Teaching</subject><subject>Terminal Care</subject><subject>Uncertainty</subject><issn>0885-3924</issn><issn>1873-6513</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2022</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>7QJ</sourceid><recordid>eNqNkc1u1DAUha0K1E4Lr4CCWNBNgv8Td9emPyCNxAbWxmPfGRwlztRORpq3x9NpUcWKlSX7O75X50PoI8EVwUR-6apua3xI-2EwoaKYkgqrClN8ghakqVkpBWFv0AI3jSiZovwMnafUYYwFk-wUnTEuJa0pW6BfN7Afgyuu3c4EC8Wtj2Anv4N0le9chJR82BTtOAxz8NZMfgzFg9mmwuRUayJs_O6J-G36HsIG8stULP0aPqfiLrh36O3a9AneP58X6Of93Y_2a7n8_vCtvV6WlmMxlUoKYdRKOUGhlsw5JTkltuYGbGMot1IAXRMsmxUQ1gjs6sYZAY7VFAyr2QW6PP67jePjDGnSg08W-t4EGOekqWgY55TTA_rpH7Qb5xjydppKpjATFPNMqSNl45hShLXeRj-YuNcE64MG3elXGvRBg8ZKZw05--F5wrwawP1NvvSegfYIQK5k5yHqZD1kAe6pf-1G_x9j_gAPa54j</recordid><startdate>202203</startdate><enddate>202203</enddate><creator>Waldrop, Deborah P.</creator><creator>McGinley, Jacqueline M.</creator><general>Elsevier Inc</general><general>Elsevier Limited</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>ASE</scope><scope>FPQ</scope><scope>K6X</scope><scope>K9.</scope><scope>NAPCQ</scope><scope>7X8</scope><orcidid>https://orcid.org/0000-0001-8325-2147</orcidid></search><sort><creationdate>202203</creationdate><title>Beyond Advance Directives: Addressing Communication Gaps and Caregiving Challenges at Life's End</title><author>Waldrop, Deborah P. ; McGinley, Jacqueline M.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c405t-9655a9b9d52e763dd96421c74aec8a24c65e2f1068be13850d78da5ed372ea373</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2022</creationdate><topic>Advance Care Planning</topic><topic>Advance Directives</topic><topic>Care plans</topic><topic>Caregivers</topic><topic>Caregiving</topic><topic>Clinical decision making</topic><topic>Communication</topic><topic>Death</topic><topic>Death & dying</topic><topic>Decision makers</topic><topic>Decision Making</topic><topic>Do not resuscitate orders</topic><topic>End of life decisions</topic><topic>end-of-life caregiving</topic><topic>Family conflict</topic><topic>Health care</topic><topic>hospice</topic><topic>Hospice care</topic><topic>Humans</topic><topic>Life events</topic><topic>Life sustaining treatment</topic><topic>Living Wills</topic><topic>Resuscitation Orders</topic><topic>Right to die</topic><topic>Teaching</topic><topic>Terminal Care</topic><topic>Uncertainty</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Waldrop, Deborah P.</creatorcontrib><creatorcontrib>McGinley, Jacqueline 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>British Nursing Index</collection><collection>British Nursing Index (BNI) (1985 to Present)</collection><collection>British Nursing Index</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Premium</collection><collection>MEDLINE - Academic</collection><jtitle>Journal of pain and symptom management</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Waldrop, Deborah P.</au><au>McGinley, Jacqueline M.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Beyond Advance Directives: Addressing Communication Gaps and Caregiving Challenges at Life's End</atitle><jtitle>Journal of pain and symptom management</jtitle><addtitle>J Pain Symptom Manage</addtitle><date>2022-03</date><risdate>2022</risdate><volume>63</volume><issue>3</issue><spage>415</spage><epage>422</epage><pages>415-422</pages><issn>0885-3924</issn><eissn>1873-6513</eissn><abstract>The premise of advance directives and care planning is to help people articulate and document their wishes so surrogate decision-makers and providers can honor them. However, beyond the completion of such a document, underlying challenges are often unaddressed
The overall purpose of the study was to investigate how communication, including but not limited to the completion of advance directives, and caregiving influenced family caregivers’ experiences. Communication gaps and caregiving challenges that were unaddressed by advance directives are presented.
Non-dominant simultaneous mixed-methods (QUAL-QUAN) were used to explore how end-of-life events influenced family caregivers. In-depth interviews were conducted with 108 caregivers about 4 months following the death of a family member who was in hospice care.
A majority (n = 90; 84.9%) had specific wishes about end-of-life treatment. Patients had a completed: Health Care Proxy-101 (93.3%); Living Will–43 (39.8%); Do Not Resuscitate orders (DNR)–82 (75.9%) and Medical Orders for Life Sustaining Treatment–40 (37%). A majority (n = 83; 76.9%) of caregivers said that they had “enough” or “just the right amount” of information to prepare for the patients’ death. Five themes illustrated caregivers’ experiences: Family Conflict; Patient/Family-Provider Conflict; Uncertainty, Caregiving Realities; Awareness-Avoidance of Dying.
A majority of had an advance directive, yet caregivers expressed feeling unprepared for decision-making, caregiving and discussing it with the dying person. The advance directive and care planning process fell short of providing needed communication, knowledge and preparation; it can be an opportunity for teaching, learning, preparing and supporting families at life's end.</abstract><cop>United States</cop><pub>Elsevier Inc</pub><pmid>34662723</pmid><doi>10.1016/j.jpainsymman.2021.09.020</doi><tpages>8</tpages><orcidid>https://orcid.org/0000-0001-8325-2147</orcidid></addata></record> |
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subjects | Advance Care Planning Advance Directives Care plans Caregivers Caregiving Clinical decision making Communication Death Death & dying Decision makers Decision Making Do not resuscitate orders End of life decisions end-of-life caregiving Family conflict Health care hospice Hospice care Humans Life events Life sustaining treatment Living Wills Resuscitation Orders Right to die Teaching Terminal Care Uncertainty |
title | Beyond Advance Directives: Addressing Communication Gaps and Caregiving Challenges at Life's End |
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