Developing an applied model for making decisions towards the end of life about care for someone with dementia.
Journal
PloS one
ISSN: 1932-6203
Titre abrégé: PLoS One
Pays: United States
ID NLM: 101285081
Informations de publication
Date de publication:
2021
2021
Historique:
received:
20
11
2020
accepted:
16
05
2021
entrez:
27
5
2021
pubmed:
28
5
2021
medline:
27
10
2021
Statut:
epublish
Résumé
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. 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. 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. 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. 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.
Sections du résumé
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.
Identifiants
pubmed: 34043728
doi: 10.1371/journal.pone.0252464
pii: PONE-D-20-36588
pmc: PMC8158904
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
e0252464Déclaration de conflit d'intérêts
The authors have declared that no competing interests exist.
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