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Headline
This study found that Hospice at Home services overall provided care likely to deliver ‘a good death’ and identified features of different models that deliver best patient outcomes.
Abstract
Background:
Many people prefer to die at home when the time comes. Hospice at home services aim to support patients to achieve this. A range of hospice at home services exist; some services have been evaluated, but there has been limited evidence synthesis.
Objectives:
The main objective was to find out what models of hospice at home services work best, for whom and in what circumstances. Other objectives supported this aim, including an analysis of the health economic costs of hospice at home models.
Design:
The study was an overarching, non-interventional, realist evaluation comprising three phases. Phase 1 was a survey of hospice at home services. Phase 2 involved 12 case studies, grouped into four models on the basis of size and 24 hours per day, 7 days per week (24/7), operations, from which quantitative and health economics data were gathered. Qualitative interview data from bereaved carers, commissioners and providers were analysed to generate context–mechanism–outcome configurations. Phase 3 comprised stakeholder consensus meetings.
Setting:
Hospice at home services across England.
Participants:
A total of 70 hospice at home managers responded to the survey. A total of 339 patient and family/informal carer dyads were recruited; 85 hospice at home providers and commissioners were interviewed. A total of 88 stakeholders participated in consensus meetings.
Main outcome measures:
The quality of dying and death of patients was assessed by bereaved carers (using the Quality of Dying and Death questionnaire). A patient’s use of services was collected using the Ambulatory and Home Care Record.
Results:
Hospice at home services varied; two-thirds were mainly charitably funded, and not all operated 24/7. Most patients (77%) had cancer. Hospice at home services overall provided care that was likely to deliver ‘a good death’, and 73% of patients died in their preferred place. Six context–mechanism–outcome configurations captured factors relevant to providing optimum hospice at home services: (1) sustainability (of the hospice at home service); (2) volunteers (use of, in the hospice at home service); (3) integration and co-ordination (with the wider health and social care system); (4) marketing and referral (of the hospice at home service); (5) knowledge, skills and ethos (of hospice at home staff); and (6) support directed at the carer at home. Key markers of a good service included staff who had time to care, providing hands-on care; staff whose knowledge and behaviour promoted supportive relationships and confidence through the process of dying; and services attending to the needs of the informal carer. Areas of potential improvement for most hospice at home services were the use of volunteers in hospice at home, and bereavement care.
Limitations:
The study had the following limitations – heterogeneity of hospice at home services, variations in numbers and patient clinical statuses at recruitment, a low Quality of Dying and Death questionnaire response rate, and missing data. Only patients with an informal carer involved on a daily basis were eligible for the study.
Conclusions:
Hospice at home services delivered high-quality care and a ‘good death’, with the majority of patients dying in their stated preferred place. Hospice at home providers can improve their impact by focusing on the features identified that deliver the best patient outcomes. Commissioners can facilitate patient preference and reduce the number of hospital deaths by working with hospice at home services to secure their financial sustainability and increase the numbers and range of patients admitted to hospice at home services.
Future research:
Future research should explore the use of volunteers in the hospice at home setting and evaluate approaches to bereavement support.
Funding:
This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 10, No. 24. See the NIHR Journals Library website for further project information.
Contents
- Plain English summary
- Scientific summary
- Chapter 1. Introduction
- Chapter 2. Review of the literature
- Chapter 3. Methodology
- Chapter 4. Patient and public involvement
- Chapter 5. National survey results and identification of service models
- Chapter 6. Case study findings: patient and carer outcomes and costs
- Recruitment of participants within hospice at home and service models
- Data availability for analysis
- Characteristics of participants at recruitment, by service model
- Outcomes
- Service-level analysis of resources and costs
- Patient-level analysis of service use
- Completion of Ambulatory and Home Care Records
- Service use
- Costs
- Summary and conclusions
- Chapter 7. Qualitative results from the case studies
- Chapter 8. Discussion
- Chapter 9. Conclusions
- Acknowledgements
- References
- Appendix 1. Literature search strategy
- Appendix 2. Service use data manipulation
- Appendix 3. Unit costs used in the economic analysis
- Appendix 4. Phase 3 report
- Appendix 5. Hypotheses for quantitative analysis generated from qualitative data
- Appendix 6. Lay guide to realist evaluation
- Appendix 7. Patient and public involvement feedback documents
- Appendix 8. Characteristics of hospice at home services
- Appendix 9. Characteristics of participants at recruitment
- Appendix 10. Summary statistics for Integrated Palliative care Outcome Scale variables for all 339 patients recruited
- Appendix 11. Number and percentage of Quality of Dying and Death questionnaires returned, by hospice and by model
- Appendix 12. Frequency of responses to individual Quality of Dying and Death questionnaire questions
- Appendix 13. Summary statistics for each outcome, by hospice at home service
- Appendix 14. Responses to Quality of Dying and Death questionnaire questions, part A, by service model
- Appendix 15. Responses to Quality of Dying and Death questionnaire questions, part B, by service model
- Appendix 16. Variables used in the analysis of the Quality of Dying and Death questionnaire scores and number of observations
- Appendix 17. Progress of patients through the study and provision of Ambulatory and Home Care Records (service use data), by model and hospice at home
- Appendix 18. Number of patients for whom there was Ambulatory and Home Care Record availability, by hospice at home service and days before death
- Appendix 19. Ambulatory and Home Care Record service use data available, by service model and days before death
- Appendix 20. Use per day of services by three time periods (0–14, 15–28, > 28 days) and service model
- Appendix 21. Box plots for hospice service use by individual hospice at home services
- Appendix 22. Box plots for hospice service use by hospice at home model
- Appendix 23. Cost per day for each service use item by three time periods and service model
- Appendix 24. Box plots for hospices’ summary costs by three time periods
- Appendix 25. Costs per day of main items of service use by time period and service model
- Appendix 26. Interview breakdown by quadrant and site
- Appendix 27. Carer interviewee characteristics
- Appendix 28. Site descriptions and patient flows
- Appendix 29. Initial programme theories
- Appendix 30. Full context–mechanism–outcome configuration tables
- Glossary
- List of abbreviations
- List of supplementary material
About the Series
Declared competing interests of authors: Vanessa Abrahamson has declared employment as a research associate at the University of Kent for the duration of this project and has received funding from the OPtimum hospice at home services for End of Life care (OPEL) project to attend and present OPEL findings at the (online) 2021 International Conference for Realist Research, Evaluation and Synthesis (February 2021). Charlotte Brigden has declared facilitating a support group for clinicians and academics involved in palliative care research projects (the Kent and Medway Palliative Care Research Group). Brooke Swash has declared research funding for other projects from Macmillan Cancer Support (London, UK) and Marie Curie (London, UK) and additional employment as senior lecturer at the University of Chester. Bee Wee has declared that her employer (Oxford University Hospitals NHS Foundation Trust) is reimbursed for her time as National Clinical Director for End of Life Care, NHS England and NHS Improvement.
Article history
The research reported in this issue of the journal was funded by the HSDR programme or one of its preceding programmes as project number 14/197/44. The contractual start date was in February 2017. The final report began editorial review in March 2021 and was accepted for publication in November 2021. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HSDR editors and production house have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.
Last reviewed: March 2021; Accepted: November 2021.
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