Background: Advance care planning (ACP), a process of discussion and review con-
There is a need for more high-quality outcome studies, particularly using randomized designs to control for confounding. These need to be underpinned by sufficient development work and process evaluation to clarify the appropriateness of outcome measures, explore implementation issues and identify "active elements."
BackgroundACP involving a facilitated conversation with a health or care professional is more effective than document completion alone. In policy, there is an expectation that health and care professionals will provide ACP support, commonly within their existing roles. However, the potential contributions of different professionals are outlined only broadly in policy and guidance. Research on opportunities and barriers for involving different professionals in providing ACP support, and feasible models for doing so, is currently lacking.MethodsWe identified twelve healthcare organizations aiming to offer system-wide ACP support in the United States, Canada, Australia and New Zealand. In each, we conducted an average 13 in-depth interviews with senior managers, ACP leads, dedicated ACP facilitators, physicians, nurses, social workers and other clinical and non-clinical staff. Interviews were analyzed thematically using NVivo software.ResultsOrganizations emphasized leadership for ACP support, including strategic support from senior managers and intensive day-to-day support from ACP leads, to support staff to deliver ACP support within their existing roles. Over-reliance on dedicated facilitators was not considered sustainable or scalable. We found many professionals, from all backgrounds, providing ACP support. However, there remained barriers, particularly for facilitating ACP conversations. A significant barrier for all professionals was lack of time. Physicians sometimes had poor communication skills, misunderstood medico-legal aspects and tended to have conversations of limited scope late in the disease trajectory. However, they could also have concerns about the appropriateness of ACP conversations conducted by others. Social workers had good facilitation skills and understood legal aspects but needed more clinical support than nurses. While ACP support provided alongside and as part of other care was common, ACP conversations in this context could easily get squeezed out or become fragmented. Referrals to other professionals could be insecure. Team-based models involving a physician and a nurse or social worker were considered cost-effective and supportive of good quality care but could require some additional resource.ConclusionsEffective staffing of ACP support is likely to require intensive local leadership, attention to physician concerns while avoiding an entirely physician-led approach, some additional resource and team-based frameworks, including in evolving models of care for chronic illness and end of life.
This paper critically reflects upon policy and research definitions of elder mistreatment in light of the findings of the United Kingdom Study of Abuse and Neglect of Older People that was commissioned by Comic Relief with co-funding from the Department of Health. The study uniquely comprised a national survey and follow-up qualitative research with survey respondents. This paper focuses on the findings of the qualitative component. One focus is the idea of ' expectation of trust ', with an argument being made that the concept needs clarification for different types of relationships. It is particularly important to distinguish between trust in affective relationships and 'positions of trust ' (as of paid carers), and to articulate the concept in terms that engage with older people's experiences and that are meaningful for different relationship categories. The qualitative research also found that ascriptions of neglect and abuse tend to be over-inclusive, in some instances to avoid identifying institutional and service failures. We also question the role and relevance of the use of chronological age in the notion of 'elder abuse '. Given that ' abuse ', ' neglect ' and ' expectation of trust ' are ill-defined and contested concepts, we recommend that although consistent definitions are important, especially for research into the epidemiology and aetiology of the syndrome and for informed policy discussion, they will unavoidably be provisional and pragmatic.
WordsThis article draws on a study aimed at developing theoretical and methodological understanding of the abuse and neglect (mistreatment) of older people in long-term care settings such as care homes and hospitals. It presents an interactionist account of mistreatment of older people in such establishments. Starting with an outline of definitional issues surrounding the topic, the allied concept of dignity is also briefly explored, and one important model described; we present dignity as the converse of mistreatment. The article argues for the potential of a positioning theory analysis of mistreatment. Positioning theory proposes that interactions are based on taking of 'positions', clusters of rights and duties to act in certain ways and impose particular meanings, which enable or prohibit access to certain storylines. It is argued that 'malignant' positioning can contribute to the creation of a climate that allows mistreatment to take place, or fails to prohibit its development.Mistreatment of people with dementia is used as an illustration, and it is argued that this is potentially generated by negative feedback loops of behaviour patterns, interpretations and malignant positioning by staff or family carers and subsequent response to these interpretations by the person with dementia. Positioning theory also allows for an explanation of the importance and impact of organisational cultures and social factors such as ageism. Individual staff members take positions, use meanings and develop storylines imbued with such factors. This understanding therefore overcomes some of the potential 3 confusions created by concepts such as organisational or institutional abuse, removing the need to ascribe intentions and personal responsibility to such constructs. The article concludes with some suggestions for further research to develop an understanding of the kinds of cultures that allow mistreatment and consequently to inform the development of protective measures.
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