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End-of-Life Decision Making in Chronic Life-Limiting Disease: A Concept Analysis and Conceptual Model

Most deaths from chronic life-limiting diseases are preceded by end-of-life decisions, yet patients and caregivers are ill-equipped to make them. The lack of a common vocabulary surrounding end-of-life decision making and the paucity of conceptual models that explicate its components hamper improvem...

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Autores principales: Levoy, Kristin, Tarbi, Elise, De Santis, Joseph
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7742686/
http://dx.doi.org/10.1093/geroni/igaa057.1346
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author Levoy, Kristin
Tarbi, Elise
De Santis, Joseph
author_facet Levoy, Kristin
Tarbi, Elise
De Santis, Joseph
author_sort Levoy, Kristin
collection PubMed
description Most deaths from chronic life-limiting diseases are preceded by end-of-life decisions, yet patients and caregivers are ill-equipped to make them. The lack of a common vocabulary surrounding end-of-life decision making and the paucity of conceptual models that explicate its components hamper improvements in clinical practice and research. Walker and Avant’s method for concept analysis was used to investigate uses of “end-of-life decision making” in the literature in order to identify its components (antecedents, attributes, consequences), describe stakeholder roles (patients, family/caregivers, health care providers), and develop a conceptual model. An iterative search strategy resulted in 143 included sources. These encompassed 1,127,095 patients (primarily older adults), 3,384 family/caregivers, and 588 healthcare providers. Evidence revealed that end-of-life decision making is a process, not a discrete event. This begins with preparation (antecedents), which involves the designation of a decision maker and iterative patient, family/caregiver, and healthcare provider communication across the chronic illness. These preparatory processes inform end-of-life decisions, which possess three attributes: 1) serial choices in the terminal illness phase that are 2) weighed in terms of their potential outcomes 3) through patient and family/caregiver collaboration. The components impact patients’ death experiences, caregivers’ bereavement, and healthcare systems (outcomes). The resulting conceptual model highlights the larger context of preparation (beyond advance care planning) and the prominent role of caregivers in the end-of-life decision making process. Enhanced measurement must account for the dose, content, and quality of the preparation and decision components that collectively contribute to outcomes, which holds implications for practice improvements and research.
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spelling pubmed-77426862020-12-21 End-of-Life Decision Making in Chronic Life-Limiting Disease: A Concept Analysis and Conceptual Model Levoy, Kristin Tarbi, Elise De Santis, Joseph Innov Aging Abstracts Most deaths from chronic life-limiting diseases are preceded by end-of-life decisions, yet patients and caregivers are ill-equipped to make them. The lack of a common vocabulary surrounding end-of-life decision making and the paucity of conceptual models that explicate its components hamper improvements in clinical practice and research. Walker and Avant’s method for concept analysis was used to investigate uses of “end-of-life decision making” in the literature in order to identify its components (antecedents, attributes, consequences), describe stakeholder roles (patients, family/caregivers, health care providers), and develop a conceptual model. An iterative search strategy resulted in 143 included sources. These encompassed 1,127,095 patients (primarily older adults), 3,384 family/caregivers, and 588 healthcare providers. Evidence revealed that end-of-life decision making is a process, not a discrete event. This begins with preparation (antecedents), which involves the designation of a decision maker and iterative patient, family/caregiver, and healthcare provider communication across the chronic illness. These preparatory processes inform end-of-life decisions, which possess three attributes: 1) serial choices in the terminal illness phase that are 2) weighed in terms of their potential outcomes 3) through patient and family/caregiver collaboration. The components impact patients’ death experiences, caregivers’ bereavement, and healthcare systems (outcomes). The resulting conceptual model highlights the larger context of preparation (beyond advance care planning) and the prominent role of caregivers in the end-of-life decision making process. Enhanced measurement must account for the dose, content, and quality of the preparation and decision components that collectively contribute to outcomes, which holds implications for practice improvements and research. Oxford University Press 2020-12-16 /pmc/articles/PMC7742686/ http://dx.doi.org/10.1093/geroni/igaa057.1346 Text en © The Author(s) 2020. Published by Oxford University Press on behalf of The Gerontological Society of America. http://creativecommons.org/licenses/by/4.0/ This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Abstracts
Levoy, Kristin
Tarbi, Elise
De Santis, Joseph
End-of-Life Decision Making in Chronic Life-Limiting Disease: A Concept Analysis and Conceptual Model
title End-of-Life Decision Making in Chronic Life-Limiting Disease: A Concept Analysis and Conceptual Model
title_full End-of-Life Decision Making in Chronic Life-Limiting Disease: A Concept Analysis and Conceptual Model
title_fullStr End-of-Life Decision Making in Chronic Life-Limiting Disease: A Concept Analysis and Conceptual Model
title_full_unstemmed End-of-Life Decision Making in Chronic Life-Limiting Disease: A Concept Analysis and Conceptual Model
title_short End-of-Life Decision Making in Chronic Life-Limiting Disease: A Concept Analysis and Conceptual Model
title_sort end-of-life decision making in chronic life-limiting disease: a concept analysis and conceptual model
topic Abstracts
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7742686/
http://dx.doi.org/10.1093/geroni/igaa057.1346
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