Title: Rapid Response Service Models in End of Life Care: What Works for Whom and in Which Circumstances?
Funder: Marie Curie

Abstract: Background: End of life care (EoLC) policies are closely aligned to the Five Year Forward View and the need to lead and deliver care with a primary care focus; recognising the importance of integrating health and social care systems, accessibility of services and care delivery based on local decision-making and the facilitation of patient choice.1,2,3,4,5 Such polices are seen as an effort to respond to the increasing incidence of chronic disease and frailty; a challenge which requires significant resources, planning of care and a shift to acknowledge when patients are reaching the end of their lives.6 Central Government also highlight the challenge of achieving cost improvements and restricted funding for quality care at the EoL.7 Research identifies that EoLC should be person-centred rather than disease specific; but, for patients and their families, there is a chronic under-representation of services to support people as their reach the end of life, particularly a shortage of out-of-hours services.8,9,10,11 Indeed, Marie Curie identifies the need for significant improvement in community services.12 Whilst innovative multi-agency community services are emerging, research to date on different service models is limited.13,14,15,16,17, 18 One such service is the Marie Curie Rapid Response Service (RRS) based in primary care; aiming to enable patient choice to maximise their days at home for as long as it feels right, to help reduce pressure on primary health care teams and services, cut the risk of unplanned hospital admissions and minimise delayed discharges.12 There is little UK evidence about the contextual conditions that enable RRSs to work to enhance EoL experiences and outcomes for patients and their families living in the community nor on the economic impact of the different models of RRSs on individuals and society. The existing evidence about the resource implications of RRSs for health and social care providers is sparse, making it particularly difficult for policy makers who are charged with developing agile and responsive services. Our aim is to undertake a realist evaluation of Rapid Response models in EoLC to uncover what works, for whom, and in which circumstances and to estimate their relative resource consequences. Methodology: Realist evaluation acknowledges that interventions take place within complex social systems and is well-suited to studying interventions, such as the RRS models, which operate at the nexus where a variety of practice, policy, resource and experiential forces operate. Realist evaluations base explanation of outcomes on the fact that interventions (RRSs) are implemented in different contexts (e.g. personal, familial, care). This combination of intervention and context triggers the activation of a mechanism (e.g. attitudinal, behavioural) which leads to the outcomes observed. Design: The project will be undertaken in three phases (P1-3) across two NHS Foundation Trusts in North East England which operationalise two contrasting RRS models. P1 will develop initial programme theories to guide data collection; including scoping the literature and system mapping to detail who is reached by the different RRS models across the sites. This will identify the key contexts (geographical, cultural, political, societal, economic/financial conditions) within which RRSs operate, and explain how outcomes occur. P2 will test these initial programme theories with empirical data and investigate the outcomes (both intended and unintended) of the RRSs for stakeholders from a realist perspective. P3 will conduct a realist economic evaluation to inform decision makers about the relative effectiveness of the RRS models, depending on context and how context impacts cost-effectiveness. In all phases, Purposive Sampling of RRS stakeholders will be used; e.g. bereaved carers, RRS staff, other health and social care professionals who interact with the services, and commissioners (number up to 100). We arrived at these numbers following discussion with practice partners about the feasibility of achieving these. Mixed Methods will be used to gather data via focus groups, interviews, questionnaire and pre-existing outcome data from Clinical Commissioning Groups (CCGs). Findings are intended to elucidate outcomes at a variety of levels – the individual level (e.g. people living with terminal illness, their carers and health professionals) and the broader service landscape level (e.g. enabling capacity in primary care, capitalising on resources) for wider societal benefit). The resulting theory will aid in understanding the direct/indirect contribution of the different RRS models on stakeholders (whether intended or unintended).

Lay abstract: "When people reach the end of their lives, it is really important that they can be where they want to be; for many people, this will be in their own home, surrounded by their friends and family. To make this choice possible, it is important that the services delivering end of life care are available at a time and place when the patient and their family need support. The problem is that we need to understand better what people need at the end of their lives, when they need it and how health and social services can support them. Patients are particularly vulnerable at the end of life and, when they need help, they need it to be quick and accessible. This research will look at how teams that are called Rapid Response Services (RRSs) work. We will compare two different RRSs in the North of England. We will try to understand if and how they help patients and their families, how they assist teams that already work in the community with patients and if they save money for the National Health Service (NHS). Professionals involved in delivering end of life care in the Rapid Response Services will be asked how their service supports people and, importantly we will ask bereaved carers whether it made a difference to them and their family member. We are also interested in finding out how the Covid-19 pandemic has affected these services. It appears that existing health and social differences have continued or been worse during the Pandemic;* for example, amongst people over the age of 80, men, and certain ethnic groups. This will be done through a number of ways, including interviews, focus groups and a questionnaire and using numerical information from the services themselves. Alternatives to face-to-face interviews and focus groups will be offered; e.g. tele-conferencing, telephone interviews (according to Covid-19 guidance and people’s own preferences). We will involve carers in the development of questions and we have a carer on the team who has used a Rapid Response Service. Findings should help us to understand better how to develop RRSs to support patients and their carers during Covid-19 and beyond. *Public Health England (2020) Disparities in the risk and outcomes of Covid-19. "

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES;7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE