Implementing advance care planning with community-dwelling frail elders requires a system-wide approach: An integrative review applying a behaviour change model

Background: Facilitating advance care planning with community-dwelling frail elders can be challenging. Notably, frail elders’ vulnerability to sudden deterioration leads to uncertainty in recognising the timing and focus of advance care planning conversations. Aim: To understand how advance care planning can be better implemented for community-dwelling frail elders and to develop a conceptual model to underpin intervention development. Design: A structured integrative review of relevant literature. Data sources: CINAHL, Embase, Ovid Medline, PsycINFO, Cochrane Library, and University of York Centre for Reviews and Dissemination. Further strategies included searching for policy and clinical documents, grey literature, and hand-searching reference lists. Literature was searched from 1990 until October 2018. Results: From 3043 potential papers, 42 were included. Twenty-nine were empirical, six expert commentaries, four service improvements, two guidelines and one theoretical. Analysis revealed nine themes: education and training, personal ability, models, recognising triggers, resources, conversations on death and dying, living day to day, personal beliefs and experience, and relationality. Conclusion: Implementing advance care planning for frail elders requires a system-wide approach, including providing relevant resources and clarifying responsibilities. Early engagement is key for frail elders, as is a shift from the current advance care planning model focussed on future ceilings of care to one that promotes living well now alongside planning for the future. The proposed conceptual model can be used as a starting point for professionals, organisations and policymakers looking to improve advance care planning for frail elders.


What this paper adds?
• • Implementing advance care planning for frail elders requires a system-wide approach that recognises the importance of living well now, relationality and early engagement. • • All stakeholders (frail elders, families and professionals) have educational needs around the impact of frailty on the life course and why advance care planning is relevant for frail elders. • • The proposed conceptual model can be used as a starting point for professionals, organisations and policymakers looking to improve advance care planning for frail elders.
Implications for practice, theory or policy • • Frail elders need to be engaged early with advance care planning to give them the greatest chance to engage physically and cognitively, at their own pace, and make and revise decisions. • • Reframing advance care planning as something that promotes living well now as well as planning for the future would relate more readily to frail elders' daily lives. • • Professionals need to be given the opportunity to develop the skills and competencies required to recognise, proactively use and create advance care planning facilitation opportunities throughout frail elders' end-of-life trajectories.

Background
Frailty is a syndrome of ageing affecting around 10% of those aged above 65, 1 increasing to around 65% of those aged 90 and above. 2 Characterised by a progressive, gradual decline in physical, psychological and social functions, 3 frailty increases vulnerability to sudden deterioration 4,5 and reduces recovery potential. 6 Compared to fit older people, those with frailty are at greater risk of disability, care home admission, hospitalisation and death. 7,8 Frail elders are projected to become one of the largest users of palliative care services, 9 although currently frail elders are often not recognised as having palliative care needs. 10 Conversations about end-of-life care, or advance care planning (ACP), are promoted in many high-income countries as a strategy to improve end-of-life care. [11][12][13][14][15] However, ACP is relatively uncommon in frail elders. [16][17][18] Priorities are often not discussed prior to significant deteriorations 19 when frail elders are unlikely to be able to voice their preferences. 20 Lack of engagement is due to multiple complex challenges. [16][17][18] These include uncertainty of prognostication, therefore recognising when to initiate ACP, 21,22 misunderstandings around what ACP means, 23 and frail elders and their families not wanting to discuss death and dying because the topic feels taboo or challenges the frail elders' coping strategies. 24,25 One previous review explored ACP in communitydwelling frail elders. 19 Sharp et al.'s 2013 review, 19 set within general practice, found that most frail elders would value discussing ACP and that general practitioners recognised ACP as part of their professional responsibility. However, conversations often did not occur due to multiple time pressures and barriers. This integrative review aims to understand how ACP can be better implemented for community-dwelling frail elders (frail elders whose main residence is home or a long-term care facility) and for all relevant multidisciplinary professionals. The review underpins a larger study to develop an intervention to facilitate ACP in this population using the COM-B behaviour change model. The literature analysis is mapped to key stakeholder groups: frail elders; families, including friends and significant others; and professionals, including health and social care professionals.

Behaviour change theory
To develop an intervention that successfully influences behaviours to bring about sustained change requires an understanding of current behaviours. 26 This review uses the COM-B 27 behaviour change model as a conceptual framework to support the identification of necessary ACP behaviours. COM-B 27 argues that for a person to change and sustain a change in behaviour, three interlinking elements are required ( Figure 1). Capability relates to the physical and psychological knowledge and skills required to engage in a behaviour. Opportunity relates to physical and social opportunities that exist independently from the individual, such as the environment, resources and interpersonal influences that facilitate a behaviour. Motivation relates to an individual's psychological processes that automatically, or reflectively, direct or encourage the behaviour, including conscious, analytical decision-making and unconscious or habitual responses. COM-B was selected as it is designed to be comprehensive and pragmatic so that it can be used with all behaviours in diverse settings, [28][29][30][31][32] links to the taxonomy of existing behaviour change theories, 33 and maps to the larger Behaviour Change Wheel, 34 thus supporting the translation of behaviour identification into behavioural interventions. 31

Rationale
Whittemore and Knafl's 35 systematic integrative review method enabled the synthesis of a wide range of experimental and non-experimental evidence from diverse sources [36][37][38][39] including policy and theoretical documents alongside empirical studies. The narrative synthesis of findings enables a more comprehensive understanding of what is a complex, and at times nebulous, phenomenon. 39

Literature search
Multiple search methods were used (Supplementary Data 1). Search terms were developed and refined through a preliminary scoping review and by reviewing key words of relevant papers. The search strategy (Supplementary Data 2) was tailored to each database. Medical Subject Headings (MeSH) were used, where available, to efficiently identify the most relevant data, 40 alongside freetext synonyms and truncation. The Boolean term 'OR' was used to combine multiple terms within a concept and 'AND' to combine concepts. 41 The search, screening and selection, conducted by the first author (S.C.), were verified by the research team, and one author (C.J.N.) completed an independent screen of 10% of papers at both screening and selection stages. Following paper identification and de-duplication, titles and abstracts were screened, and full papers were assessed for eligibility guided by the inclusion criteria (Table 1).
Searches were limited to papers from 1990 when ACP first appeared in the literature 15 to October 2018, but not limited by source. The concept of, and process for, quality assessment is complex in integrative reviews with diverse sources, particularly when non-empirical sources are included. 35 The complexity of this review is increased as multiple conceptualisations of frailty and ACP exist internationally and over time. To ensure all relevant evidence was incorporated, papers were considered based on their relevance to the review's aim, and so no quality appraisal was conducted. This enabled the inclusion of papers that discussed concepts in their broadest sense, for example, where authors described participants as frail, and residence in long-term care homes was used as a frailty proxy ( Figure 2).

Data analysis
This focussed on the identification and synthesis of attitudes to, and necessary behaviours for, implementing ACP with community-dwelling frail elders. COM-B 27 was used as a theoretical framework to inform analysis. Using the constant comparison method, 42 codes and subthemes iteratively emerged within the three COM-B elements of Capability, Opportunity and Motivation. 27 Codes were then mapped to the three stakeholder groups (frail elders, families and professionals) to better target behaviours and intervention strategies. Analysis was conducted by S.C. and discussed and reviewed with the research team throughout the process, with final themes agreed by consensus.
The main behavioural components from the narrative synthesis are presented within the three COM-B themes in Table 3 and discussed below. Themes are interrelated, and while they are presented separately here for clarity, they should be considered holistically.

Capability: physical and psychological capabilities that enable ACP engagement
Discussed by all but one paper, 61 this theme was the least nebulous of the three themes and is represented by two subthemes: (1) Education and training -packages to improve ACP engagement for all stakeholders, and (2) Personal ability -individual knowledge and skills to enable engagement with ACP.

Opportunity: key messages
Frail elders are more likely to engage with ACP if it becomes part of everyday practice as part of an integrated, comprehensive, system-wide approach that occurs over time, rather than as a one-off event. Professionals need to recognise, act on, and create opportunities for frail elders to engage with ACP throughout their end-of-life trajectory. To enable this, professionals need support from engaged leaders within their organisations and the wider system, including the provision of all necessary resources such as staffing, finances, education and common documentation.

Motivation: psychological processes that encourage or direct individual ACP engagement
Discussed by all but four papers, 46,62,77,82 this theme related to all stakeholders. It is represented by four closely related subthemes: (1) Conversations on death and dying -difficulties inherent in engaging with ACP conversations; (2) Living day to day -frail elders' focus on living in the moment rather than planning for the future; (3) Personal beliefs and experience -how these influence ACP engagement; (4) Relationality -the impact of living within relationships.

Main findings
The main behavioural components, factors and requirements necessary to conduct successful ACP with community-dwelling frail elders are represented conceptually below (Figure 3). This proposed conceptual model includes the interrelated stakeholder behaviours and factors as well as the organisational and system requirements found to be important influencers particularly in enabling professional's opportunity behaviours.
The model demonstrates the complexity inherent in ACP facilitation for community-dwelling frail elders, with all elements required for successful ACP implementation. It recommends an approach that recognises the importance of early engagement, relationality, living well now, and stakeholder education, particularly educating professionals to develop the knowledge and skills required to recognise, create and use ACP facilitation triggers throughout frail elders' end-of-life trajectories. These core recommendations are discussed further below.

Capability
Early engagement, which provides frail elders the greatest chance of being able to engage physically and cognitively with ACP, is the key Capability. If successful, early engagement enables frail elders to engage at their own pace, to understand necessary concepts and how these relate to them, to put meaningful plans in place, to revise decisionmaking, and to develop trusting relationships with professionals. While finding the 'right time' to start ACP is difficult, 6,21 early engagement promotes the concept of ACP as an ongoing process that takes place over time and is revisited regularly throughout the frail elders' life course. 85,86 To enable early engagement, all stakeholders require ongoing education. Notably, professionals needed to develop the knowledge and skills required to recognise, create and use triggers to facilitate ACP throughout frail elders' end-of-life trajectories. Evidence suggests that professionals often require knowledge and communication-based training to enable ACP 85 as conversations can be challenging. 87 The requirement to create and use triggers is also strongly influenced by Opportunity, as frail elders often have little professional contact and few perceived end-of-life needs. 16,88 Opportunity ACP as part of everyday practice and something that occurs over time, rather than a single event, is the key Opportunity. This is reflected in the model's recommendation of the vital necessity of a system-wide approach, and with it, the necessary resources to support it at every level. This takes forward Sharp et al.'s 19 review which suggested policymakers and healthcare professionals need to address multiple issues to promote personal autonomy, such as informed decision-making, within healthcare systems with limited resources. The concept of an integrative, comprehensive, system-wide approach to ACP for frail elders supports the call for more integrated care systems to better meet the needs of older people. 89 The model also aligns with the public health palliative care approach, which raises community awareness and engagement with end-of-life issues and influences social views of death and dying. 90 This approach presents an opportunity for behavioural change in ACP and may help challenge the conceptualisation of ACP as a failure of medical care by some. 91 As with this public health palliative movement, to effect long-term ACP change requires a system-wide approach, incorporating national campaigns and policy, through to the involvement and commitment of multiple community leaders, organisations and individuals. 92

Motivation
Relationality and living well now are the key Motivations. Individual autonomy is promoted throughout current ACP policies and literature and the current measurable activities system of incentivising health and social care. 91 However, the model challenges the concept of autonomy as the sole motivating factor for frail elders' ACP engagement. The findings demonstrate the importance frail elders place on living and making decisions within relationships, sometimes choosing that others will make ACP decisions for them. This review demonstrates that often frail elders focus on maintaining current quality of life rather than on ACP, with future planning seen as irrelevant for some within the context of their uncertain physical and psychological trajectory. This links strongly with Capability and Opportunity, emphasising the need to start conversations early and continue them over time, providing frail elders opportunities to change their views as their trajectory changes. These findings are supported by much of the ageing literature which suggests that many older people prioritise trusting relationships and relational decision-making over autonomy, 85,93,94 valuing living well now above future planning. 23,95 Reframing ACP for frail elders to become something that promotes living well now in addition to future planning and recognising the importance of relational autonomy by supporting frail elders to make decisions within relationships would relate more readily to their daily lives. This reframing may be key to successful ACP implementation in this population.

Behavioural change theory
The model calls for system-wide, multi-level implementation, the recommended approach for successful behaviour change interventions, 96 but current health and social care resource limitations mean this is challenging. While policy, for example, the UK long-term care plan, demonstrates the importance of personalised care at end of life, the UK community sector is experiencing increasing workloads, patient complexity, and lack of funding. 97,98 This has led to the prioritisation of core care, such as diagnosis and treatment, over more holistic needs 99 such as ACP. The global picture is similar, particularly regarding end-of-life and palliative care, 100 with priorities often focussed on more fundamental needs such as access to analgesia. 101 However, an incremental approach, making pragmatic decisions by focussing on fewer behaviour changes and building on the success of these, 34 can also be used to facilitate ACP with frail elders. This strategy can be demonstrated by the concept of early engagement, which could be supported by making ACP part of everyday practice and providing targeted materials for frail elders to read in their own time. This would reduce the need for professional involvement at every step of the decision-making process, thus minimising the use of health and social care resources, and as a by-product could promote trusting relationships and relational decision-making.

Strengths and limitations
The proposed conceptual model is limited by the literature. The study exclusion criteria may have meant some relevant papers were missed, particularly papers prior to 1990, those not in English, and those where older participants self-identified as healthy. The use of a proxy for frailty, particularly the proxy of residence in long-term care homes, may have skewed the data away from the needs of frail elders living in domestic settings. The voices of frail elders and families were reduced as literature mainly focussed on behaviours and factors influencing professionals. Furthermore, minimal literature explored early engagement, public health models or moving beyond professional responsibility for ACP within this population. The strength of the review, and therefore the proposed conceptual model, is its rigorous methods; use of a research team to discuss, review and verify the process; and the use of a theoretical model. Using COM-B 27 as a framework ensured a focus on implementation throughout the review and synthesis, and that individualand system-level behaviours were considered. While some behaviours were influenced by more than one COM-B element, this demonstrates the complexity of the topic and the multidimensional, interdependent behaviours that require targeting for the success of any wholesystem intervention.

Implications for clinical practice and research
The conceptual model can be used as a starting point for professionals, organisations and policymakers when looking to improve ACP for frail elders. The themes and key necessary requirements are displayed at stakeholder, organisation and system levels to help target relevant behaviours or requirements depending on the reader's purpose. This is demonstrated above with the example of early engagement. Further targets that do not require significant health and social care resource but are likely to have a significant impact on successful ACP facilitation are providing opportunities for professionals to develop skills to recognise, proactively use and create facilitation opportunities; professionals' understanding and working with relationality, including developing trusting relationships and enabling relational decision-making; and reframing ACP for frail elders to focus on living well now as well as future planning.

Conclusion
This review is the first to define the necessary requirements to enable ACP for community-dwelling frail elders and synthesise these into a proposed conceptual model. The model can be used as a starting point for professionals, organisations and policymakers looking to improve ACP for community-dwelling frail elders. Key messages are that frail elders should be engaged early in the process of ACP, that ACP should be reframed as a discussion of current care goals as well as future planning, and that professionals need the opportunity to develop the skills and competencies required to recognise, proactively use and create ACP opportunities throughout frail elders' end-oflife trajectories. Further research will focus on refining and testing the model in practice, prior to collaborative intervention development with stakeholders.

Author contributions
S.C., C.J.N., K.G. and C.N. made substantial contributions to the study design. The search, screening and selection of papers was conducted by S.C., verified by the research team, with C.J.N. completing an independent screen of 10% of papers at both screening and selection stages. Data analysis and synthesis was conducted by S.C. and discussed and reviewed with C.J.N., C.N. and K.G. throughout the review. Final themes and the conceptual model were agreed by consensus. S.C. prepared the manuscript and C.J.N., C.N. and K.G. revised it critically for important intellectual content. All authors approved the final version of the manuscript.

Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This article presents independent research funded by the National Institute for Health Research (NIHR) and Health Education England. The views expressed are those of the author(s) and not necessarily those of the National Health Service (NHS), the NIHR or the Department of Health.

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