Advance Care Planning, Shared Medical Decision Making
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Recent papers in Advance Care Planning, Shared Medical Decision Making
This article explore the choices made in two Council of Europe member states with common law traditions, both of which have relatively recently introduced legislative frameworks for advance healthcare planning. In England and Wales, the... more
This article explore the choices made in two Council of Europe member states with common law traditions, both of which have relatively recently introduced legislative frameworks for advance healthcare planning. In England and Wales, the relevant measure is the Mental Capacity Act 2005 (MCA) which came into effect on 1 October 2007 while, in Ireland, the legislation is the Assisted Decision-Making (Capacity) Act 2015 (ADMA), which was signed in law on 30 December 2015 and is expected to come into effect in 2017.
Notwithstanding a number of similarities between the MCA and the ADMA, some interesting variations may be identified, reflecting differences in approach to the underlying principles of autonomy and protection. This article undertakes a comparative exploration of each measure, both in terms of background and also in terms of the detail of the approaches taken.
Notwithstanding a number of similarities between the MCA and the ADMA, some interesting variations may be identified, reflecting differences in approach to the underlying principles of autonomy and protection. This article undertakes a comparative exploration of each measure, both in terms of background and also in terms of the detail of the approaches taken.
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... more
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 overlapping 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.
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.
- by Giles Birchley and +1
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- Frailty, Dementia, Shared decision making, Death and dying
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