Title: Optimum ‘Hospice at Home’ Services for End of Life Care
Funder: Department of Health and Social Care

Abstract: Evidence has shown that the number of patients wishing to die at home is increasing [1,2,3]. Providing patients with choice about where they receive their care at the end of life is central to UK policy [4]. Much effort has been invested in health services to support care in this setting, including services called Hospice at Home (HAH) which aim to offer the quality and ethos of hospice care at home. There is minimal consensus regarding what constitutes or defines a HAH service and a lack of evidence on what HAH features promote better care and outcomes at the end of life. The James Lind Alliance has identified this topic as a priority in its work: Palliative and end of life care Priority Setting Partnership: Putting patients, carers and clinicians at the heart of palliative and end of life care research [5]. Our aim is to investigate the impact of the organisation and delivery of different models of HAH services on patient and carer outcomes and experiences of end of life care. Our research question is: What are the features of HAH service models that work, for whom, and under what circumstances? The study objectives are to: 1. Identify the range and variation of HAH models operating across England. 2. Categorise the models by type, key features and setting. 3. Assess the impact of each model type on patient and carer outcomes. 4. Investigate the resource implications and costs of patient care in each model. 5. Explore the experiences of patients, family carers, providers and commissioners of the different HAH models. 6. Identify the enablers and barriers to embedding HAH models as part of service delivery. Our research design is informed by realist evaluation [6]; it will be used to identify candidate programme theories that will be tested and refined throughout the proposed research in order to address our objectives. The research will be conducted in 3 phases: 1:Survey. A national telephone survey of all known HAH services in England to map the range and variation of HAH services to develop a typology of models. The analysis will be used to develop a sampling framework to identify case study sites and to inform phase 2 data collection. 2:Case studies. We will purposively select up to 6 case studies of HAH services that vary in type and location. Sixty six (66) patients per case study will be recruited and tracked over time. The primary outcome will be Quality of Dying and Death (QODD), a validated interview instrument conducted with bereaved carers [7-9]. Secondary outcomes will include holistic patient assessment (iPOS) [10], bereaved carer assessment of care (VOICES) [11] and service use (ACHR) [12]. Regression methods will be used to isolate the impact of each service model on quantitative outcomes. An embedded economic analysis will capture resource use and calculate costs. Barriers and enablers to service provision will be explored through in depth interviews with carers, commissioners and providers. Analysis will be iterative with the aim of testing and refining programme theories and to develop provisional context-mechanism-outcome (CMO) configurations. Normalisation Process Theory (NPT) will be used to understand why a model has or has not been embedded within a whole system of care [13]. 3:National consensus workshops. Provisional CMO configurations will be presented and discussed with stakeholders in two workshops to validate interpretation of the data and to refine our understanding of what works, for whom, and under what circumstances. Guidelines will be developed for services/commissioners to help develop HAH services to match their local needs. References 1. Sheppherd S, Wee B, Straus SE. Hospital at home: home-based end of life care (Cochrane Review) 2012 www.thecochranelibrary.com 2. Gomes B, Calanzani N, Gysels M, Hall S Higginson IJ. Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliative Care 2013, 12:7 3. Higginson IJ, Sarmento VP, Calanzani N, Benalia H and Gomes B. Dying at home - is it better: A narrative appraisal of the state of the science, Palliative Medicine 2013 27 (10) 918-924 4. Department of Health. End of Life Care Strategy – promoting high quality care for all adults at the end of life. 2008 London: HMSO. 5. Palliative and end of life care Priority Setting Partnership: Putting patients, carers and clinicians at the heart of palliative and end of life care research. Final Report. January 2015. http://www.palliativecarepsp.org.uk/wpcontent/ uploads/2015/01/PeolcPSP_Final_Report.pdf (accessed 03/02/2015). 6. Pawson, R. Evidence-based Policy: A Realist Perspective, 2006 Sage, London 7. Curtis JR, Patrick DL, Engelberg RA, Norris K, Asp C, Byock I. A measure of the quality of dying and death. Initial validation using after-death interviews with family members. J Pain Symptom Manage. 2002 Jul;24(1):17-31. 8. Albers G, Echteld MA, de Vet HC, Onwuteaka-Philipsen BD, van der Linden MH, Deliens L. Evaluation of quality-of-life measures for use in palliative care: a systematic review. Palliative Medicine. 2010 Jan;24(1):17-37. 9. Hales S, Zimmermann, Rodin G. The quality of dying and death: a systematic review of measures. Palliative Medicine. 24(2) 127–144 10. Integrated Palliative Outcome Scale (IPOS) http://pos-pal.org/ (accessed 03/02/2015) 11. Office of National Statistics. National Survey of Bereaved People (VOICES) 2013. Statistical Bulletin July 2014. http://www.ons.gov.uk/ons/dcp171778_370472.pdf (accessed: 03/02/2015). 12. Guerriere DN & Coyte.The Ambulatory and Home Care Record: A Methodological Framework for Economic Analyses in Endof- Life Care. Journal of Aging Research, Volume 2011. http://dx.doi.org/10.4061/2011/374237 13. May C, Finch T, Ballini L, MacFarlane A, Mair F, Murray E, Treweek S, Rapley T: Evaluating complex interventions and health technologies using normalization process theory: development of a simplified approach and web-enabled toolkit. BMC Health Services Research 2011, 11(1):245.

Lay abstract: Background to the study Offering people a choice about where they receive their care at the end of life is central to UK policy and the number of people wishing to die at home is increasing. We also know from work undertaken with the general public that care at home is an important concern for many people. Much effort has been invested in health services to support care at home, including services called “Hospice at Home” (HAH) which aim to offer hospice care in the individual’s home. The aim of hospice care is to improve the quality of life of people who have an incurable illness up to the point of death. This includes medical, emotional, social, practical, psychological, and spiritual care, as well as addressing the needs of the person’s family and carers. Currently a range of different HAH services exist in the UK and it is unclear which features of these services enable better care and outcomes at the end of life for patients and families. Therefore the research question we will ask is: What are the features of Hospice at Home service models that work, for whom, and under what circumstances? Study design The study will start with a national telephone survey of all HAH services in England to find out about the services they provide. We will ask for information on how they are funded, which health care professionals work for them and what kind of roles they have, and whether they provide care overnight and at weekends. We will identify the services to participate in the survey through the Hospice UK directory. Services will then be categorized into ‘model’ type, and 4-6 cases (1-2 case studies per model) will be selected for in-depth investigation. A method called ‘realist evaluation’ will be used to gain an understanding of how the services delivered within the different models impact on patients and carers and whether they are supported and cared for as well as possible. We will also compare the costs of delivering services in the different models and talk to providers of services about local issues that help or hinder the delivery of a good service. Our findings will be presented at two national workshops. At these workshops, we will seek feedback on the implications of our findings from the audiences including HAH providers, local health service planners, and service user representatives. By combining all this information we will assess which models are likely to lead to the best outcomes and represent best value for money. How will we make sure the research is on the right track for patients and families? We are aware that this needs to be done sensitively and we are experienced in undertaking research with bereaved people. Additionally we will work closely with our PPI (patient and public involvement) advisory group who will advise us on the most sensitive approaches. Our team includes two lay co-applicants who have experienced bereavement and they will have a key role in the team to ensure a thoughtful and ethically sound approach. How will we make the research findings available? A project report and summaries for lay audiences will be produced. Guidelines will be developed for services to help plan HAH services in the future. We will reach professional audiences through articles in peer-reviewed journals and through presentations. The people who will benefit will be NHS patients at the end of life, and their families and carers.

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