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Developing an applied model for making decisions towards the end of life about care for someone with dementia

BACKGROUND: Many people with dementia reach the end-of-life without an advance care plan. Many are not ready to have conversations about end-of-life, and decision-making is left to their families and professionals when they no longer have capacity. Carers may benefit from further support with decisi...

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Autores principales: Davies, Nathan, De Souza, Tanisha, Rait, Greta, Meehan, Jessica, Sampson, Elizabeth L.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8158904/
https://www.ncbi.nlm.nih.gov/pubmed/34043728
http://dx.doi.org/10.1371/journal.pone.0252464
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author Davies, Nathan
De Souza, Tanisha
Rait, Greta
Meehan, Jessica
Sampson, Elizabeth L.
author_facet Davies, Nathan
De Souza, Tanisha
Rait, Greta
Meehan, Jessica
Sampson, Elizabeth L.
author_sort Davies, Nathan
collection PubMed
description BACKGROUND: Many people with dementia reach the end-of-life without an advance care plan. Many are not ready to have conversations about end-of-life, and decision-making is left to their families and professionals when they no longer have capacity. Carers may benefit from further support with decision-making. To develop this support, it is important to understand the decision-making process. AIM: Explore with family carers and people living with dementia the decision-making process and factors that influence decision-making in dementia end of life care, to produce a model of decision-making in the context of dementia end-of-life care. METHODS: Semi-structured interviews with 21 family carers and 11 people with dementia in England (2018–2019) from memory clinics, general practice and carer organisations. Interviews were analysed using thematic analysis and findings were mapped onto the Interprofessional Shared Decision Making model, refined to produce a modified model of decision-making in dementia. RESULTS: Participants described five key decisions towards the end-of-life as examples of decision making. We used these experiences to produce a modified model of decision-making in dementia end-of-life-care. The model considers the contextual factors that influence the decision-making process, including: personal preferences; advance care planning and Lasting Power of Attorney; capacity and health and wellbeing of the person with dementia; support from others and clarity of roles. The decision-making process consists of seven inter-linked stages: 1) identifying the decision maker or team; 2) sharing and exchanging information; 3) clarifying values and preferences; 4) managing and considering emotions; 5) considering the feasibility of options; 6) balancing preferred choice and the actual choice; and 7) implementation and reflecting on outcomes. CONCLUSIONS: The modified model breaks down the decision-making process and attempts to simplify the process while capturing the subtle nuances of decision making. It provides a framework for conversations and supporting decisions by carers.
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spelling pubmed-81589042021-06-09 Developing an applied model for making decisions towards the end of life about care for someone with dementia Davies, Nathan De Souza, Tanisha Rait, Greta Meehan, Jessica Sampson, Elizabeth L. PLoS One Research Article BACKGROUND: Many people with dementia reach the end-of-life without an advance care plan. Many are not ready to have conversations about end-of-life, and decision-making is left to their families and professionals when they no longer have capacity. Carers may benefit from further support with decision-making. To develop this support, it is important to understand the decision-making process. AIM: Explore with family carers and people living with dementia the decision-making process and factors that influence decision-making in dementia end of life care, to produce a model of decision-making in the context of dementia end-of-life care. METHODS: Semi-structured interviews with 21 family carers and 11 people with dementia in England (2018–2019) from memory clinics, general practice and carer organisations. Interviews were analysed using thematic analysis and findings were mapped onto the Interprofessional Shared Decision Making model, refined to produce a modified model of decision-making in dementia. RESULTS: Participants described five key decisions towards the end-of-life as examples of decision making. We used these experiences to produce a modified model of decision-making in dementia end-of-life-care. The model considers the contextual factors that influence the decision-making process, including: personal preferences; advance care planning and Lasting Power of Attorney; capacity and health and wellbeing of the person with dementia; support from others and clarity of roles. The decision-making process consists of seven inter-linked stages: 1) identifying the decision maker or team; 2) sharing and exchanging information; 3) clarifying values and preferences; 4) managing and considering emotions; 5) considering the feasibility of options; 6) balancing preferred choice and the actual choice; and 7) implementation and reflecting on outcomes. CONCLUSIONS: The modified model breaks down the decision-making process and attempts to simplify the process while capturing the subtle nuances of decision making. It provides a framework for conversations and supporting decisions by carers. Public Library of Science 2021-05-27 /pmc/articles/PMC8158904/ /pubmed/34043728 http://dx.doi.org/10.1371/journal.pone.0252464 Text en © 2021 Davies et al https://creativecommons.org/licenses/by/4.0/This is an open access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/) , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
spellingShingle Research Article
Davies, Nathan
De Souza, Tanisha
Rait, Greta
Meehan, Jessica
Sampson, Elizabeth L.
Developing an applied model for making decisions towards the end of life about care for someone with dementia
title Developing an applied model for making decisions towards the end of life about care for someone with dementia
title_full Developing an applied model for making decisions towards the end of life about care for someone with dementia
title_fullStr Developing an applied model for making decisions towards the end of life about care for someone with dementia
title_full_unstemmed Developing an applied model for making decisions towards the end of life about care for someone with dementia
title_short Developing an applied model for making decisions towards the end of life about care for someone with dementia
title_sort developing an applied model for making decisions towards the end of life about care for someone with dementia
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8158904/
https://www.ncbi.nlm.nih.gov/pubmed/34043728
http://dx.doi.org/10.1371/journal.pone.0252464
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