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dc.contributor.authorGolden, Sara E
dc.contributor.authorRubim, Felipe
dc.contributor.authorThammana, Rekha
dc.contributor.authorDisher, Natalie
dc.contributor.authorVranas, Kelly C
dc.contributor.authorTeno, Joan M
dc.contributor.authorIzumi, Seiko
dc.contributor.authorKim, Hyunjee
dc.contributor.authorTjia, Jennifer
dc.contributor.authorSullivan, Donald R
dc.date.accessioned2024-01-22T16:46:31Z
dc.date.available2024-01-22T16:46:31Z
dc.date.issued2023-12-04
dc.identifier.citationGolden SE, Rubim F, Thammana R, Disher N, Vranas KC, Teno JM, Izumi S, Kim H, Tjia J, Sullivan DR. Perspectives on advance care planning needs of persons with advanced dementia from their surrogates and clinicians. PEC Innov. 2023 Dec 4;3:100241. doi: 10.1016/j.pecinn.2023.100241. PMID: 38076487; PMCID: PMC10704328.en_US
dc.identifier.eissn2772-6282
dc.identifier.doi10.1016/j.pecinn.2023.100241en_US
dc.identifier.pmid38076487
dc.identifier.urihttp://hdl.handle.net/20.500.14038/52998
dc.description.abstractObjectives: This study was designed to understand the experience and needs surrounding advance care planning (ACP) discussions for surrogate decision-makers of persons with advanced dementia (PWAD). Methods: Semi-structured qualitative interviews based on end-of-life communication models with a convenience sample of 17 clinicians, and 15 surrogates of PWAD. We used a hybrid approach of deductive and inductive thematic analysis. Results: Two main themes emerged. 1)Deficits in communication: Often surrogates did not fully comprehend the disease trajectory or medical treatments, like the likelihood of pneumonia and use of mechanical ventilation, nor concepts related to ACP, particularly legal documents and orders such as Do Not Hospitalize, which made decision-making challenging as perceived by clinicians. 2)Decision-making conflicts: Clinicians perceived a disconnect between surrogates' understanding of their loved one's preferences and knowing how or when to operationalize them. Conclusions: Significant gaps in knowledge surrounding disease trajectory and complications, such as pneumonia, and aspects of ACP, exist. These gaps create decision-making challenges for surrogates and clinicians alike. Innovation: This study assessed both clinicians and surrogate decision-makers' perspectives on communication and decision-making concerning care preferences, goals, and ACP. The study findings from a national cohort can inform decision-support interventions for clinicians and surrogate decision-makers of PWAD.en_US
dc.language.isoenen_US
dc.relation.ispartofPEC Innovationen_US
dc.relation.urlhttps://doi.org/10.1016/j.pecinn.2023.100241en_US
dc.rightsPublished by Elsevier B.V. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).; Attribution-NonCommercial-NoDerivatives 4.0 Internationalen_US
dc.rights.urihttp://creativecommons.org/licenses/by-nc-nd/4.0/*
dc.subjectCaregiversen_US
dc.subjectLong-term careen_US
dc.subjectQualitativeen_US
dc.subjectQuality of lifeen_US
dc.subjectSurrogatesen_US
dc.titlePerspectives on advance care planning needs of persons with advanced dementia from their surrogates and cliniciansen_US
dc.typeJournal Articleen_US
dc.source.journaltitlePEC innovation
dc.source.volume3
dc.source.beginpage100241
dc.source.endpage
dc.source.countryNetherlands
dc.identifier.journalPEC innovation
refterms.dateFOA2024-01-22T16:46:32Z
dc.contributor.departmentPopulation and Quantitative Health Sciencesen_US


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Published by Elsevier B.V. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).; Attribution-NonCommercial-NoDerivatives 4.0 International
Except where otherwise noted, this item's license is described as Published by Elsevier B.V. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).; Attribution-NonCommercial-NoDerivatives 4.0 International