Barriers and facilitators for GPs in dementia advance care planning: A systematic integrative review

Abstract

BackgroundDue to the disease’s progressive nature, advance care planning (ACP) is recommended for people with early stage dementia. General practitioners (GPs) should initiate ACP because of their longstanding relationships with their patients and their early involvement with the disease, however ACP is seldom applied.AimTo determine the barriers and facilitators faced by GPs related to ACP with people with dementia.Data sourcesWe systematically searched the relevant databases for papers published between January 1995 and December 2016, using the terms: primary healthcare, GP, dementia, and ACP. We conducted a systematic integrative review following Whittemore and Knafl’s method. Papers containing empirical data about GP barriers and/or facilitators regarding ACP for people with dementia were included. We evaluated quality using the Mixed-Method-Appraisal-Tool and analyzed data using qualitative content analysis.ResultsTen qualitative, five quantitative, and one mixed-method paper revealed four themes: timely initiation of ACP, stakeholder engagement, important aspects of ACP the conversation, and prerequisites for ACP. Important barriers were: uncertainty about the timing of ACP, how to plan for an uncertain future, lack of knowledge about dementia, difficulties assessing people with dementia’s decisional capacities, and changing preferences. Facilitators for ACP were: an early start when cognitive decline is still mild, inclusion of all stakeholders, and discussing social and medical issues aimed at maintaining normal life.ConclusionDiscussing future care is difficult due to uncertainties about the future and the decisional capacities of people with dementia. Based on the facilitators, we recommend that GPs use a timely and goal-oriented approach and involve all stakeholders. ACP discussions should focus on the ability of people with dementia to maintain normal daily function as well as on their quality of life, instead of end-of-life-discussions only. GPs need training to acquire knowledge and skills to timely initiate collaborative ACP discussions.

Five-year risk of admission to long-term care home and death for older adults given a new diagnosis of dementia: a population-based retrospective cohort study

“…However, discussions about advanced care planning -which should incorporate the high likelihood for admission to a longterm care home and death -have several barriers. 36 Studies consistently find that individuals with dementia are far less likely to receive palliative care than individuals with other diseases, [37][38][39][40] which reflects sub optimal endoflife care for patients and may lead to families being unprepared for their loved one's death. 41 Our approach to displaying death rate visually (Figure 3) may be useful for informing conversations between health care providers and persons with dementia.…”

Initiation of advance care planning in newly admitted nursing home residents in Flanders, Belgium: A prospective cohort study

“…Earlier studies confirm that residents are less likely to participate in ACP if they have cognitive impairment . This “delayed” initiation can be explained by difficulties in determining the optimal timing of ACP due to prognostic uncertainty, or unwillingness to participate in ACP because the resident is in denial of their diagnosis or they do not feel the urge to discuss their preferences for future care . When this resident loses their decision‐making capacity, end‐of‐life decisions will have to be made by a family member or proxy decision maker.…”

“…23 This "delayed" initiation can be explained by difficulties in determining the optimal timing of ACP due to prognostic uncertainty, or unwillingness to participate in ACP because the resident is in denial of their diagnosis or they do not feel the urge to discuss their preferences for future care. 28 When this resident loses their decision-making capacity, end-of-life decisions will have to be made by a family member or proxy decision maker. In this context, it is vital that preferences are known and residents are engaged in ACP before their health deteriorates and/or the first signs of dementia appear.…”

A narrative review of facilitating and inhibiting factors in advance care planning initiation in people with dementia

“…However, despite the numerous benefits of ACP and recommendations, initiating ACP remains a challenge [12,13]. Although more countries are encouraging the use of ACP, or even legalising advance directives (AD) which is a document that enables any individual to state their preferred treatments in the future, they are still not fully utilised [4].…”

“…Although more countries are encouraging the use of ACP, or even legalising advance directives (AD) which is a document that enables any individual to state their preferred treatments in the future, they are still not fully utilised [4]. This may come from several causes: a lack of ACP awareness [13], lack of confidence in initiating ACPs amongst HCPs [14], or an ACP discussion format that focuses mainly on medical and end-of-life issues, thus reducing ACPs to a tick-box exercise for HCPs [12,15]. Furthermore, contextual factors such as limited access to care [16] and cultural and religious beliefs may also be barriers to embedding ACPs as an integral part of care [17].…”