Heather Richardson

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 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.

Collaboration: Securing a future for palliative care research

There is potentially something to be gained for everyone by increasing palliative care research collaboration. In a recent editorial in BMJ Supportive & Palliative Care, Higginson1 reviews current challenges for palliative care research, both in terms of the UK’s research agenda responsiveness to national policy and through key messages to funding agencies to ensure that research effectively translates into better patient and family care at the end of life. A specific call for greater collaboration (both nationally and internationally) is made. She is not the first. An editorial by Stein Kaasa2 in 2008 at the advent of the European Palliative Care Research Collaborative (EPCRC) called for ‘an international arena for palliative care research’. Has this been achieved? Particularly at this time of confusion for the United Kingdom in light of the recent referendum decision to leave the European Union (EU) and the vacuum that leaves in terms of a clear understanding of its implications for future research partnership, it is critical to understand how robust international collaboration can be achieved and what practical steps are needed to …

Heart failure care or palliative care? Patients want and need both

Introduction People with advanced heart failure have significant symptom/disease burden. Optimal models of care have not yet been widely tested and evaluated. We aimed to test a novel combined heart failure palliative care service model. Method A mixed-method feasibility study, including comparison with an age- and gender-matched cohort receiving specialist palliative care. Results 27 male and 13 female patients (mean age 84 years, range 60–99) were recruited. Integrated Palliative care Outcome Scale scores, compared with an age- gender- matched specialist palliative care population, demonstrated significantly higher levels of fatigue (mean score 2.6 v 1.9, p = 0.01), poor mobility (2.75 v 1.6, p = 0.00), drowsiness (2.03 v 0.6, p = 0.00), breathlessness (2.2 v 0.9 , p = 0.00), sore/dry mouth (1.4 v 0.6, p = 0.004), depression (1.4 v 0.5, p = 0.002) and not feeling at peace (1.6 v 0.9, p = 0.02). 67% (95% CI: 49–79%) were severely/overwhelmingly affected by poor mobility and 50% (95% CI: 34–65%) were affected by weakness/fatigue in the previous week. In qualitative interviews (8 patients, 6 carers and 2 joint), patients sought heart failure care critical for optimal symptom control, and whilst realistic about the limitations of therapies, wanted parallel support to prepare for and manage future deterioration. Conclusion People with advanced heart failure have considerably greater needs than an age-matched palliative care population. They have realistic expectations about interventions available but identify practical support and appropriately skilled healthcare teams as important to their care. Professionals skilled in both heart failure and palliative care interventions in an integrated service model are needed. References Hogg KJ, Jenkins SMM. Prognostication or identification of palliative needs in advanced heart failure: where should the focus lie? BMJ 2012;98(7):523524 Nordgrena L, Soerensen S. Symptoms experienced in the last six months of life in patients with end-stage heart failure. Eur J Cardiovasc Nurs 2003;2(1):213217 Pattenden JF, Mason AR, Lewin RJP. Collaborative palliative care for advanced heart failure: outcomes and costs from the ‘Better Together’ pilot study. BMJ Support Palliat Care 2013;3(1):69–76 Selman L, Harding R, Beynon T, et al. Modelling services to meet the palliative care needs of chronic heart failure patients and their patients: current practice in the UK. Palliat Med 2007;21(5):385–390

6 Compassionate neighbours – an innovative model building caring communities

Introduction In 2014 St Joseph’s Hospice set up compassionate neighbours (CN) to address social isolation for those experiencing a chronic or terminal illness. Built on foundations of community development principles the neighbours provide emotional and social support to community members. With significant funding from Nesta we are upscaling the project with seven other hospices. Aim Our aim is to build a wider network of CN who are supporting people in their local communities; we will test and learn how the project can be replicated in other areas. Our ultimate aim is to create a social movement establishing a network of CNs across the country. Method We are training and mentoring other hospice adopters to replicate the project in their own areas whilst testing which ingredients are key to the success of the project. Our review of the programme including formal evaluation will form the basis for a potential national roll out across the country. Results Review of our progress including a recent conference for CN feedback from hospice CEOs and project leads describes ongoing interest in the CN programme. There is additional interest from other hospices and other organisations outside of the Nesta programme. That said challenges exist around local implementation of a model shaped elsewhere translation of particular principles underpinning the CN programme and concerns around long-term sustainability and ownership of the network. Conclusion Further thought is required about how to build the social movement and whether this effort should sit within the hospice sector or within a community development context in the future.

2 Learning from a new model of end of life care for older people with frailty/multi-morbidities – the challenges and opportunities for specialist palliative care services

Introduction Bromley Care Coordination (BCC) at St Christopher’s Hospice is an innovative nurse-led community based service to enable patients with advanced illness or frailty thought to be in the last year of life to receive timely and well- coordinated care at home. Commissioned in 2014 by Bromley CCG reaches people who would not traditionally be seen by hospice community care teams. The Bromley Care Coordination Centre offers 24/7 telephone support and home visits to patients providing symptom control pain control and psychological support. Aim To understand patient characteristics end of life needs and BCC service response in order to refine service delivery. Methods Service evaluation using routine collected service data notes and case reviews. Results Results since Jan 2014: 2200 people have been referred (55% from GP 26% from Hospital 19% other) Of those who have died 70% have died in their own home/care home Average age of patients referred 86 The ratio of non-cancer to cancer diagnoses is 85%: 15% 86% of patients have no other current health care intervention apart from the GP and occasionally a social care agency/provider (16/17 data) 39% of patients live alone many more patients live with a spouse who is also frail and elderly. Conclusions Learning has led to working with a different skill mix developing a ‘stratification’ tool introducing the role of care navigators and volunteers. BCC has extended the hospice’s reach by 50% in one CCG. The next stages are embedding sustainability and implementation in other areas.

OA11 Public health and hospices: what is really possible?

Introduction Whilst a growing number of hospices are proactively engaging in the public health agenda, questions remain about whether this is an approach that hospices can adopt successfully. (Sallnow et al . 2014). The experience of St Christopher’s in the development of its social hub (The Anniversary Centre) offers insights into the challenges and how these are best addressed. Background The Anniversary Centre was established to provide a more open and flexible approach to end of life care and to challenge and change public attitudes towards death and dying. It sought, also, to contest an existing culture of care, shifting from professional management of problems to one in which people take a lead in their own care and wellbeing. Methods A review of the progress of the Centre in achieving these aims has been undertaken five years after its establishment. Questions focus on: The degree to which the centre has engaged more of the local communities How much its users are able to determine their own priorities, care and wellbeing through attendance at the centre What evidence of a public health approach exists in the support it provides. Results The Centre offers a new and alternative way of supporting people living with a life threatening condition. Although successes have been achieved, organisational and historical cultural barriers continue to limit progress. Conclusion Hospice culture can prohibit public health approaches to palliative care. However, related innovation is possible when clear values and stories are shared, champions are identified and professional assumptions are challenged. Reference Sallnow L, Paul S. Understanding community engagement in end-of-life care: developing conceptual clarity. Crit Public Health 2015;25(2):231–8.