A qualitative study: Professionals’ experiences of advance care planning in dementia and palliative care, ‘a good idea in theory but …’

Abstract

This study has identified the professional, organisational and legal factors that influence advance care planning implementation; professional training should target these specific areas. There is an urgent need for standardisation of advance care planning documentation. Greater clarity is also required on the roles and responsibilities of different professional groups. More complex aspects of advance care planning may be better carried out by those with specialist skills and experience than by generalists caring for a wide range of patient groups with different disease trajectories.

Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

“…13,14,35,53,67,87,88 Several studies suggest that, as there is uncertainty about which professional should undertake discussion of ACP, there is a tendency, particularly among GPs, to defer responsibility to someone else. 9,12,53,64,67,89 Evidence also suggests that, although patients tend to expect professionals to take the initiative, there is a tendency for professionals to wait for patients to open the discussion. 5,43,87,90 As a result of this 'bystander effect' it is likely that the discussion never happens, or may occur too late, often in response to critical events, by which time options are restricted.…”

“…While accepting the value of ACP in principle, professionals express uncertainty about how it should be implemented, and the feasibility of incorporating end of life discussions into routine practice. 53,89 Practical considerations such as lack of time, or a suitable and private location to hold discussions, which may be difficult and lengthy, are additional constraints. 11,67,87 The difficulty of prognostication emerges as one of the most important barriers to professional initiation of ACP, particularly in relation to patients with long-term conditions such as heart failure and chronic obstructive pulmonary disease (COPD) which are characterised by prolonged frailty and dwindling.…”

“…35,88 Respondents tended to shift perspective in different contexts, acknowledging that ACP was a good idea in principle, but moving to describe its limitations in practice. 53,89 Professionals were aware of organisational and financial incentives to meet quality appraisal targets relating to avoidance of hospitalisation, maintaining the GSF register and documenting PPOD. There were also some concerns, especially among GPs, about the imposition of ACP as a bureaucratic 'tick box' task, which undermined clinical judgement and autonomy.…”

“…However, it is difficult to see how a more substantial exploration of goals and preferences for ACP, especially as this relates to future incapacity, could easily be incorporated within existing constraints of time, resources and professional engagement in generalist community care settings. 89 An alternative would be to develop ACP as a discrete and specialist referral, in line with the Respecting Choices programme originating in Wisconsin and widely implemented in areas of Canada and Australia. 44,137,191 This allows patients to decide if they wish to take part in one or more discussions of ACP with a trained facilitator, involving detailed exploration of goals and preferences for DISCUSSION AND CONCLUSIONS NIHR Journals Library www.journalslibrary.nihr.ac.uk future care, not just at the end of life.…”

Ethical issues for older people in the emergency department

“…A key barrier identified in a qualitative study of professionals in relation to ACP in dementia was concern that the current provision of healthcare services does not always allow us to meet the preferences individuals may express in an ACP (24). This challenge is real and relies on teams caring for patients to access information, support and services out with the hospital setting.…”