Dying Well with Reduced Agency: A Scoping Review and Thematic Synthesis of the decision-making process in dementia, traumatic brain injury and frailty

Giles Birchley, Kerry Jones, Richard Huxtable, Jeremy Dixon, Jenny Kitzinger, Linda Clare

Research output: Contribution to journalArticle

8 Citations (Scopus)

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.
LanguageEnglish
Pages1
Number of pages15
JournalBMC Medical Ethics
Volume17
Issue number46
DOIs
StatusPublished - 27 Jul 2016

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dying
dementia
decision-making process
Dementia
Decision Making
brain
death
decision making
Terminal Care
Policy Making
Population
Lenses
Traumatic Brain Injury
autonomy
inclusion
paradigm
Law
experience
Group

Keywords

  • End-of-life; Good Death; Mental capacity; Decision-making; Scoping review; Thematic synthesis; Frailty; Dementia; Traumatic brain injury

Cite this

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; Clare, Linda.

In: BMC Medical Ethics, Vol. 17, No. 46, 27.07.2016, p. 1.

Research output: Contribution to journalArticle

Birchley, Giles ; Jones, Kerry ; Huxtable, Richard ; Dixon, Jeremy ; Kitzinger, Jenny ; Clare, Linda. / Dying Well with Reduced Agency: A Scoping Review and Thematic Synthesis of the decision-making process in dementia, traumatic brain injury and frailty. In: BMC Medical Ethics. 2016 ; Vol. 17, No. 46. pp. 1.
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