Libby Sallnow

An introduction to advance care planning in practice

#### Summary points Advance care planning has been defined as a process of formal decision making that aims to help patients establish decisions about future care that take effect when they lose capacity.1 It recently gained increased importance in the United Kingdom, after being recommended by the end of life care strategy.2 The first national guidance for health and social care staff in the UK was produced in 2007 and revised in 2011.3 Before this, terms and concepts used in the UK had included “living wills” and “advance directives,” which have been replaced by terminology outlined in the national guidance and the Mental Capacity Act 2005.4 Advance care planning differs from general care planning in that it is usually used in the context of progressive illness and anticipated deterioration. This has implications for its acceptability to patients. It is a voluntary process and may result in a written record of a patient’s wishes, which can be referred to by carers and health professionals in the future. If a patient loses capacity, health and social care professionals should make use of information gleaned from the advance care planning process to guide them in decision making when needed. The Royal College of Physicians and other national …

The impact of a new public health approach to end-of-life care: A systematic review

Background: Communities play an increasingly significant role in their own health and social care, and evidence demonstrates the positive impact of this work on a range of health outcomes. Interest is building regarding the application of the principles of the new public health approach to those facing the end of life and their families and communities. Aim: To review the evidence relating to the impact of a new public health approach to end-of-life care, specifically as this applies to efforts to strengthen community action. Design: A systematic review employing narrative synthesis. Both meta-ethnography and the use of descriptive statistics supported analysis. Data sources: Eight databases (AMED, ASSIA, BiblioMap, CINAHL, Cochrane Reviews, EMBASE, MEDLINE and PsycINFO) were searched from the earliest record to March 2015 using set eligibility criteria. Results: Eight articles were included in the analysis. Three main themes emerged from the meta-ethnography: making a practical difference, individual learning and personal growth and developing community capacity. The quantitative findings mapped to the meta-ethnography and demonstrated that engaging communities can lead to improved outcomes for carers such as decreased fatigue or isolation, increase in size of caring networks and that wider social networks can influence factors such as place of death and involvement of palliative care services. Conclusion: Evidence exists for the impact of community engagement in end-of-life care. Impact assessment should be an integral part of future initiatives and policy makers should recognise that these approaches can influence complex issues such as carer support, community capacity, wellbeing and social isolation.

Understanding community engagement in end-of-life care: developing conceptual clarity

Over the past decade, public health approaches to end-of-life care have received increased literature, policy and practice focus. These developments recognise the significance of community engagement activities and their contribution to end-of-life care. In the United Kingdom, community engagement is a priority for the majority of hospices. Nevertheless, there exists some ambiguity about the range of different practice that exists under this heading, the principles underpinning it and the outcomes for the work. Conceptual clarity is an essential next step in the development of this emergent field. The aim of this paper is to present a definition and a conceptual model of community engagement for end-of-life care services and the communities they serve. A spectrum of community engagement in end of life care is presented, derived from models in the general community engagement literature. Types of engagement extend on a continuum from informing through consulting, co-producing, collaborating to empowerment, with the later levels capable of achieving more penetrating health and social change. The factors that affect the type and nature of engagement are represented in boxes at either end, demonstrating that it is not the influence of a single factor, but the overall balance of factors that determines the quality and outcomes of the engagement work. This spectrum is designed to aid professional services and the communities they serve to embark on community engagement projects with an open awareness of the requirements and key components underpinning their success and a shared understanding and language.

Promoting palliative care in the community: Production of the primary palliative care toolkit by the European Association of Palliative Care Taskforce in primary palliative care

Background: A multidisciplinary European Association of Palliative Care Taskforce was established to scope the extent of and learn what facilitates and hinders the development of palliative care in the community across Europe. Aim: To document the barriers and facilitators for palliative care in the community and to produce a resource toolkit that palliative care specialists, primary care health professionals or policymakers, service developers, educationalists and national groups more generally could use to facilitate the development of palliative care in their own country. Design: (1) A survey instrument was sent to general practitioners with knowledge of palliative care services in the community in a diverse sample of European countries. We also conducted an international systematic review of tools used to identify people for palliative care in the community. (2) A draft toolkit was then constructed suggesting how individual countries might best address these issues, and an online survey was then set up for general practitioners and specialists to make comments. Iterations of the toolkit were then presented at international palliative care and primary care conferences. Results: Being unable to identify appropriate patients for palliative care in the community was a major barrier internationally. The systematic review identified tools that might be used to help address this. Various facilitators such as national strategies were identified. A primary palliative care toolkit has been produced and refined, together with associated guidance. Conclusion: Many barriers and facilitators were identified. The primary palliative care toolkit can help community-based palliative care services to be established nationally.

Public health approaches to end of life care in the UK : an online survey of palliative care services

Aims and objectives The public health approach to end-of-life care has gained recognition over the past decade regarding its contribution to palliative care services. Terms, such as health-promoting palliative care, and compassionate communities, have entered the discourse of palliative care and practice; examples exist in the UK and globally. This scoping study aimed to determine if such initiatives were priorities for hospices in the UK and, if so, provide baseline data on the types of initiatives undertaken. Methods An online survey was designed, piloted and emailed to 220 palliative care providers across the four UK countries. It included a total of six questions. Quantitative data were analysed using descriptive statistics. Qualitative data were analysed thematically. Findings There was a 66% response rate. Of those providers, 60% indicated that public health approaches to death, dying and loss were a current priority for their organisation. Respondents identified a range of work being undertaken currently in this area. The most successful were felt to be working with schools and working directly with local community groups. The findings demonstrate the relevance of a public health approach for palliative care services and how they are currently engaging with the communities they serve. Although the approach was endorsed by the majority of respondents, various challenges were highlighted. These related to the need to balance this against service provision, and the need for more training and resources to support these initiatives, at both national and community levels.

Understanding the impact of a new public health approach to end-of-life care: a qualitative study of a community led intervention

Abstract Background Social isolation is recognised for its substantial impact on mortality, ranking above many established public health threats. The end of life can compound this problem; with escalating acute care costs due to poor social support and rising numbers of deaths, new solutions are needed. Examples of peers providing social support exist within end-of-life care but have not been well characterised. We aimed to understand the impacts and facilitative processes of a home visiting intervention. Methods A qualitative study with mixed methods of data collection (in-depth interviews, participant observation, documentary analysis) was done. Volunteers and beneficiaries matched for more than three home visits, staff members leading the project, and family carers were included. Data were analysed according to modified grounded theory. Participants were recruited by theoretical sampling, and recruitment was concluded when theoretical saturation was reached. Ethics approval was obtained. Findings Data included 21 in-depth interviews, 19 episodes of participant observation, and 19 documents. Three central impacts emerged from the data. Participants stated that peer-support filled a gap in social support that neither professionals nor family could meet. Participants described becoming socially connected and linked this connection to increased wellbeing. Volunteers viewed themselves and those they visited as peers, despite differences in age or diagnosis. This view explained how compassion could be expressed, instead of a more detached form of empathy. A key facilitative process was the development of a relationship based on mutuality rather than passivity and dependence. On this basis, the relationship could be reconstructed outside the professional domain and could develop a depth and sustainability beyond the formal intervention. Interpretation This study highlights the role of social networks in promoting wellbeing at the end of life. For sustainable changes to occur, relationships must be reciprocal rather than passive. These findings have important implications for how social care interventions are structured at the end of life. Peer support networks are a sustainable and appropriate care model, and this study provides evidence of their utility and sheds light on the fundamental components of compassionate care. Funding None.

Conceptualisation of volunteering in palliative care: a narrative synthesis of the literature

Background Volunteering in the UK has recently been embraced under the banner of the ‘Big Society’ but its history has long been aligned to the development of the hospice movement. As the philosophy of palliative care has spread throughout the world, volunteer roles have evolved differently, influenced by local needs, local structures and the available resources. Although it is widely believed that volunteering makes important contributions to patients, their families, hospice organisations, individual volunteers and the wider society, attempts to quantify its impact or outcomes have been limited. This study aimed to develop a conceptual model through which volunteering in palliative care could be understood. Methods Narrative synthesis was used to develop a conceptual model of volunteering in palliative care based on a systematic review of the literature regarding volunteering in palliative care. Results A systematic search of the literature identified 5613 papers, of which 126 met the inclusion criteria. The review revealed three inter-related themes: (1) the impact of volunteering; (2) motivations of those volunteering; (3) the locus of control in volunteering in palliative care. Meta-ethnographic analysis produced a theoretical model in which satisfaction in volunteering is conceived as a continual process of negotiation between seeking to improve outcomes for the patient, family or organisation as well as to improve personal fulfilment and self-esteem of the individual volunteer. These aspects of volunteering may be in alignment or in opposition. Conclusion This review identifies the range of influences that may act on an individual volunteering within an organisation, and suggests that the traditional processes of engaging and managing volunteers require reappraisal. Greater focus should be placed on understanding the benefits of volunteering both for the organisation and the individual and the measurement of both the process and outcomes associated with volunteering.

WA7 Refining and sharing our methods - how to research the public health approach to palliative care?

According to the WHO, public health has a mandate to: 1) Assess and monitor the health of communities and populations to identify health problems and priorities, 2) assure that all populations have access to appropriate and cost– effective care, 3) devise public policies and actions to solve identified local and national health problems and priorities. In line with this, public health has increasingly provided a framework for descriptive and epidemiological palliative care research, related to the first two mandates. Demographic, epidemiological, and sociological changes are increasingly asking for a broader public health approach to palliative care research, one that incorporates the principles of health promotion. This workshop will be led by an international collaborative group interested in how these different mandates relate to one another in developing a public health and palliative care research agenda. The first presentation will focus on the more traditional public health and epidemiological research approach and how it has addressed some public health challenges in palliative care but has missed or ignored others. The second presentation will focus on the New Public Health approach and how this has been translated into research evaluating health promoting palliative care and related interventions, but faces the major challenge of developing an appropriate thorough methodological and evidence base. The presentations will examine the contribution of each tradition and determine how they can inform and strengthen one another. The workshop will conclude with a panel discussion to engage participants to develop a research agenda for the future.

Managing malignant ascites at home

Abstract A case is described of rapidly re-accumulating malignant ascites managed with repeated drainage at home. This approach provided the best symptomatic relief since it was safe, well-tolerated, cost-effective and allowed the patient to stay with her family during the final stage of her illness. We discuss the pathogenesis, classification, clinical features and management based on the current literature, with particular reference to the developing world. We conclude that repeated abdominal paracentesis in the home is safe, cost-effective and an appropriate strategy for the management of recurrent malignant ascites.