Introduction

Context

Hospice and palliative care services in England

The UK is world-leading in hospice and palliative care (H&PC) services, which care for people with life-limiting health conditions and those approaching the end of their lives.1 These services are small or extremely small players operating in a complex system of health and social care that people approaching the end of life must use and navigate. Hospice services in the UK historically began in the charitable sector, and most of the funding for H&PC services continues to be derived from charitable sources. H&PC organisations are also in receipt of NHS funding (on average, the NHS contributes 32% of total funding to hospices in England2) and are subject to NHS commissioning processes. These factors, together with their small size, provide a range of challenges for H&PC organisations in terms of funding and sustainability.

Individual H&PC services have developed in localities as a result of voluntary activity led by key local people. There is a strong sense of ownership in communities of their ‘local hospice’, which continues to be vital for fundraising activities and generates a large supply of willing volunteers. The reputation of the hospice, both as a worthy, local charity and for excellence in care, is held very dear for all of these reasons . The public’s sense of identification with its local hospice tends to focus on the bricks and mortar building, and there is often less awareness or understanding of palliative care community services, including hospice at home (HAH) services.

National strategic direction

National strategy in England sets further context in terms of the drive towards encouraging choice about where people receive care and increasing the opportunities to be cared for and to die at home (moving away from the acute hospital sector).3 This would seem to be in step with public preferences; evidence suggests that the majority of people would wish to die at home,4 and also indicates that the number of people expressing this wish is increasing.5,6 Identifying how care can be delivered and maintained at home was a top research priority in a public consultation by the James Lind Alliance in 2015.7 However, in 2019, only 24.4% of all deaths in England occurred at home (not including care home deaths)8 and it seems that, overall, health and social care services are not well equipped to meet this demand.9

Another direction of national strategy that provides context for this study is that towards the integration of health and social care. H&PC services lend themselves naturally to this integration because holistic care, recognising the physical, psychological, social and spiritual aspects of people’s needs, has long been a basic precept of good palliative care. H&PC services routinely employ social care professionals, counsellors and spiritual care staff in addition to health-care professionals (HCPs).

Broader cultural and societal issues

Although H&PC services are prized and respected, as described previously, the reality of talking about and accepting death and dying in contemporary health care is more of a challenge. The public increasingly demands more and better acute, interventional health care into older and older age, staving off the inevitability of the ending of life. In this context, HCPs may lack the skills or confidence to open discussions about curtailing interventional medical care when it can no longer offer benefit and about planning for death and dying. H&PC services, which are so explicitly geared to death and dying, may therefore struggle to be accepted and to attract referrals of people who could benefit from their care. This issue may have even more impact in some cultural or faith communities or among those with diseases other than cancer, which are not as clearly identified with dying.

In addition to these influences, caring for and enabling people to die at home is affected by significant societal changes that have been under way over many decades. It can no longer be assumed that families will live nearby or have the resources to provide unpaid care. Home-based care of any description is heavily dependent on family/informal care, and those without such support have a more limited range of options.

Hospice at home services and the evolution of this project

Hospice at home services sit within this web of factors as a subset of H&PC services, often, but not always, linked to a local hospice organisation and building. Most of these services explicitly aim to support care and dying at home when this is the preferred place of death (PPOD).

In 2007, Pilgrims Hospices in East Kent decided to increase community palliative care provision to enable more patients to die in their own homes. To ensure that these service changes were in line with the best available evidence, a literature review of the evidence for HAH services was commissioned from the University of Kent. The literature review10 indicated that the evidence base for the efficacy of such services was weak, with few controlled studies, although many qualitative studies indicated that such services were appreciated by patients and families. The characteristics of services that appeared to produce the most favourable outcomes included care given by palliative care specialists, out-of-hours (OOH) availability, crisis intervention and rapid-response capability. Based on the findings from the literature review, the hospice designed and implemented a new HAH service.

A successful application to the National Institute for Health and Care Research (NIHR) Research for Patient Benefit funding stream was made to evaluate the impact of the new service. The evaluation used a quasi-experimental cluster design and the results have been published.11,12 This new service did not improve patients’ chances of dying in their preferred place (> 60% of patients died in their preferred place in both the intervention and the control groups), although patients in areas where the HAH service was operating had a significantly higher rate of a preference to die at home.

From the results of this study, a number of questions remained unanswered:

• Is there a better service configuration than the one examined here that would allow more patients to die where they prefer and to have a good quality of death?
• One of the gaps in this service was difficulty accessing medications, which was, in part, due to challenges in working with other community providers – how can we improve this with our partners in the community?
• What would be the highest level of achievement of PPOD we could hope to reach, that is what is a realistic gold standard and what services are able to deliver this?

Our collaboration with the National Association for Hospice at Home (NAHH) for this current study confirmed that these questions, and the overall question of ‘what does an optimal HAH service look like?’, were commonly debated across the sector.

An updated literature review confirmed that the published evidence for HAH services continued to demonstrate wide variation in HAH service provision and the settings in which such services operated around England. Services that had been evaluated often demonstrated positive benefits for patients, such as increased choice and dying at home.13,14 However, the published studies reported such a range of different outcome measures that there was no opportunity to synthesise the data or to make useful comparisons. It was also unclear what elements of HAH services delivered which outcomes and to what extent such outcomes were delivered in conjunction with other services that formed part of the whole system of care. This lack of clarity about what aspects of services produce the desired outcomes for patients (and their families/informal carers) makes sharing good practice between HAH services difficult and limits efficient service development.

Aim and objectives

Parts of this section have been reproduced from Butler et al.15 © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted. This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: https://creativecommons.org/licenses/by/4.0/. The text below includes minor additions and formatting changes to the original text.

The aim of this study was to investigate the impact of the organisation, delivery and settings of different models of HAH on patient and carer outcomes and experiences of end-of-life care (EOLC) in England. Given the complexity of the whole system of care used by patients at the end of life, the range and variation of HAH services themselves, and the many different settings in which they operate, a realist evaluation methodology was chosen.16,17 This theory-driven methodology uses iterative, qualitative data analysis, supplemented in this study by quantitative data, to identify the underlying generative mechanisms that produce outcomes in complex systems. In addition, the study looked at the financial cost of care in the different services and settings.

The overarching research question that the study addressed was as follows: what are the features of HAH models that work, for whom and in what circumstances?

The detailed study objectives were as follows:

• phase 1
  • identify the range and variation of HAH services operating across England
  • categorise the HAH services into models according to key features and setting
• phase 215
  • assess the impact of each model on patient and carer outcomes
  • investigate the resource implications and costs of patient care in each model
  • explore the experiences of patients, family carers, and providers and commissioners of the different HAH models
  • identify the enablers of and barriers to embedding HAH models as part of service delivery.

Report structure

Chapter 2 describes the published literature about evaluations of HAH services in England. As a spin-off from this study, a realist-informed review of the literature was also undertaken and was utilised in the qualitative analysis.18 Chapter 3 includes information about realist methods, descriptions of the three-phase study design with diagrammatic illustrations and details about the mixed-methods data analysis. Chapter 4 describes the development, management and contribution of patient and public involvement (PPI) in the study. Chapters 5–7 present the results: Chapter 5 presents the results of the survey undertaken in phase 1, Chapter 6 presents the quantitative data and the health economics results and Chapter 7 presents the results of the qualitative data analysis. The synthesis of the overall mixed-methods data set is addressed in Chapter 8, alongside the discussion. Chapter 9 presents the study conclusions, implications for health care, limitations and recommendations for future research.