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Dying well with reduced agency: a scoping review and thematic synthesis of the decision-making process in dementia, traumatic brain injury and frailty

Birchley, Giles; Jones, Kerry; Huxtable, Richard; Dixon, Jeremy; Kitzinger, Jenny and Clare, Linda (2016). Dying well with reduced agency: a scoping review and thematic synthesis of the decision-making process in dementia, traumatic brain injury and frailty. BMC Medical Ethics, 17, article no. 46.

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DOI (Digital Object Identifier) Link: https://doi.org/10.1186/s12910-016-0129-x
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Abstract

Background

In most Anglophone nations, policy and law increasingly foster an autonomy-based model, raising issues for large numbers of people who fail to fit the paradigm, and indicating problems in translating practical and theoretical understandings of ‘good death’ to policy. Three exemplar populations are frail older people, people with dementia and people with severe traumatic brain injury. We hypothesise that these groups face some over-lapping challenges in securing good end-of-life care linked to their limited agency. To better understand these challenges, we conducted a scoping review and thematic synthesis.

Methods

To capture a range of literature, we followed established scoping review methods. We then used thematic synthesis to describe the broad themes emerging from this literature.

Results

Initial searches generated 22,375 references, and screening yielded 49, highly heterogeneous, studies that met inclusion criteria, encompassing 12 countries and a variety of settings. The thematic synthesis identified three themes: the first concerned the processes of end-of-life decision-making, highlighting the ambiguity of the dominant shared decision-making process, wherein decisions are determined by families or doctors, sometimes explicitly marginalising the antecedent decisions of patients. Despite this marginalisation, however, the patient does play a role both as a social presence and as an active agent, by whose actions the decisions of those with authority are influenced. The second theme examined the tension between predominant notions of a good death as ‘natural’ and the drive to medicalise death through the lens of the experiences and actions of those faced with the actuality of death. The final theme considered the concept of antecedent end-of-life decision-making (in all its forms), its influence on policy and decision-making, and some caveats that arise from the studies.

Conclusions

Together these three themes indicate a number of directions for future research, which are likely to be applicable to other conditions that result in reduced agency. Above all, this review emphasises the need for new concepts and fresh approaches to end of life decision-making that address the needs of the growing population of frail older people, people with dementia and those with severe traumatic brain injury.

Item Type: Journal Item
Copyright Holders: 2016 The author(s)
ISSN: 1472-6939
Extra Information: 15 pp.
Keywords: end-of-life; good death; mental capacity; decision-making; scoping review; thematic synthesis; frailty; dementia; traumatic brain injury
Academic Unit/School: Faculty of Wellbeing, Education and Language Studies (WELS) > Health, Wellbeing and Social Care > Health and Social Care
Faculty of Wellbeing, Education and Language Studies (WELS) > Health, Wellbeing and Social Care
Faculty of Wellbeing, Education and Language Studies (WELS)
Item ID: 47303
Depositing User: Kerry Jones
Date Deposited: 26 Sep 2016 08:41
Last Modified: 11 Jun 2019 02:47
URI: http://oro.open.ac.uk/id/eprint/47303
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