Professor Claire Butler MA, M,B BChir, FRCP

CHSS Clinical Professor of Palliative Medicine

c.butler-779@kent.ac.uk
01227 816086

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I joined CHSS early in 2017 as Clinical Professor of Palliative Medicine, and am leading a project researching Hospice at Home services in England, funded by the National Institute for Health Research. I also work clinically as Consultant and clinical lead in Palliative Care at Medway Community Healthcare CIC. In my clinical setting, I participate in research as a local Principal Investigator for national portfolio studies in palliative care.
My other work at CHSS includes supervision for PhD and ICAP students and support for the Palliative Care Research Interest Group.
Education:
The Lady Eleanor Holles School, Hampton 1968-78
Newnham College, University of Cambridge 1979-82
St Thomas’ Hospital Medical School 1982-5

Memberships and Professional Bodies:
Fellow of the Royal College of Physicians of London
Member of the Association for Palliative Medicine
General Medical Council

Also view these in the Kent Academic Repository

Articles

Barker, R. J., Wilson, P. and Butler, C. (2023) 'How can the priorities of older, frail patients and their carers be used to inform policy and practice at the end of life? Insights from qualitative research across multiple settings', BMJ Open. BMJ Publishing Group. doi: 10.1136/bmjopen-2022-068751.

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Objectives: The paper reports on experiences from older patients and their carers of current provision of end-of-life care in England. It draws on data from a study that sought to explore the extent to which national policy for end-of-life care in England was aligned with the aspirations of stakeholders. Specifically, the study explored the balance between clinical healthcare vs social and relational care asking how this was aligned to patient priorities at this time of life. Here, we examine the extent to which the patient voice is attended to when health and social care services are delivered to older people and consider how the experiences of patients and carers could be used to improve outcomes. Design: The work draws on data collected as part of a realist informed study using a case study approach to gather data. Setting: Clinical Commissioning Groups were used as boundaries of the three case studies and within these geographical areas data was collected in hospitals, care homes, hospices and patient homes. Participants: This paper reports on in-depth interviews conducted with 21 patients at the end of life and 22 relatives/cares (n=43). Results: While the medical care patients received was generally praised, it was reported that relational care, particularly in respect to adult social care received at home, was fragmented and of varying quality. Relational and social support were key to the patient and carer experience yet appeared to be hard to access. Conclusion: The work highlights the misalignment between the availability of different types of care at the end of life and patient priorities. More attention should be paid to the voice of older patients and their carers, drawing on their experiences to influence the way policy is translated into practice.

Butler, C., Wilson, P. M., Abrahamson, V., Mikelyte, R., Gage, H., Williams, P., Brigden, C. L., Swash, B., Rees-Roberts, M., Silsbury, G. and others. (2022) 'Optimum models of hospice at home services for end-of-life care in England: a realist-informed mixed-methods evaluation.', NIHR Journals Library. NIHR. doi: 10.3310/MSAY4464.

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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

Barker, R., Wilson, P. M. and Butler, C. (2020) 'Does national policy in England help deliver better and more consistent care for those at the end of life?', Journal of Health Service Research and Policy. Sage. doi: 10.1177/1355819620914939.

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Objectives: To explore the extent to which national policy in end of life care in England influences and guides local practice, to ensure that care for patients over the age 75 years is of a consistently good quality. Method: This paper reports on phase one of a larger study and focuses its discussion on the high level (macro) determinants emerging from the analysis. Fifteen in-depth interviews were conducted with professionals involved in the development of English policy in end of life care. Results: Factors influencing the quality of end of life care were stratified into three system levels: meso, macro and micro. English national policy was reported to be an important macro-level determinant of effective outcomes and examples were provided to demonstrate how policy was influencing practice. Yet the complexity of the area and the range of interacting contributory factors mean the value of policy alone is hard to assess. At the macro-level concern was voiced around: whether policy was effective in tackling rising inequity; lack of mandatory leverage to exert change relating to end of life outcomes; the impact of ongoing infrastructural change on statutory services; workforce pressures; over-reliance on acute services; and continued abdication of responsibility for end of life care to medical professionals supported by the continued dominance of the medical model of care. Conclusions: The links between the existence of policy at the macro-level of the system, and the effective enactment of good practice remain unclear although strategies are suggested to help achieve greater national consistency in end of life care outcomes. Policymakers must pay attention to the following: controlling the rise in localism and its contribution to regional inequalities; the impact of continuous infrastructural change together with increasing workforce pressures; encouraging broader professional and public responsibility for recognition; and care of those at the end of life.

Hashem, F., Brigden, C. L., Wilson, P. M. and Butler, C. (2020) 'Understanding what works, why and in what circumstances in Hospice at Home Services for End of Life Care: applying a realist logic of analysis to a systematically searched literature review', Palliative Medicine. Sage, pp. 16-31. doi: 10.1177/0269216319867424.

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Background: We have undertaken a systematically searched literature review using a realist logic of analysis to help synthesise the diverse range of literature available on hospice at home services. Aim: To find out in the existing literature what features of hospice at home models work best, for whom and under what circumstances. Design: A realist logic of analysis was applied to synthesise the evidence focusing on mechanisms by which an intervention worked (or did not work). An initial programme theory was developed using the National Association for Hospice at Home standards, Normalisation Process Theory and through refinement using stakeholder engagement. Data sources: PubMed, Science Direct, AMED, BNI, CINAHL, EMBASE, Health Business Elite, HMIC, Medline, PsychINFO, SCOPUS, Web of Science, DARE, Google Scholar, NHS Evidence, NIHR CRN portfolio database, NIHR journal library of funded studies, including searches on websites of relevant professional bodies [August 2014, June 2017, June 2019]. Results: Forty-nine papers were reviewed, of which 34 wereincluded contributing evidence to at least one of eight theory areas: marketing and referral, sustainable funding model, service responsiveness and availability, criteria for service admission, knowledge and skills of care providers, integration and co-ordination, anticipatory care, support directed at carers. Conclusions: Our literature review showed how it was possible to develop a coherent framework and test it against 34 published papers and abstracts. Central to this review was theory building, and as further evidence emerges, our programme theories can be refined and tested against any new empirical evidence.

Rees-Roberts, M., Williams, P., Hashem, F., Brigden, C. L., Greene, K., Gage, H., Goodwin, M., Silsbury, G., Wee, B., Barclay, S. and others. (2019) 'Hospice at Home services in England: a national survey', BMJ Supportive and Palliative Care. BMJ Publishing Group, pp. 1-7. doi: 10.1136/bmjspcare-2019-001818.

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OBJECTIVE: Hospice at home (HAH) services aim to enable patients to be cared for and die at home, if that is their choice and achieve a "good death". A national survey, in 2017, aimed to describe and compare the features of HAH services and understand key enablers to service provision. METHODS: Service managers of adult HAH services in the 'Hospice UK' and National Association for Hospice at Home directories within England were invited to participate. Information on service configuration, referral, staffing, finance, care provision and enablers to service provision were collected by telephone interview. RESULTS: Of 128 services invited, 70 (54.7%) provided data. Great diversity was found. Most services operated in mixed urban/rural (74.3%) and mixed deprivation (77.1%) areas and provided hands-on care (97.1%), symptom assessment and management (91.4%), psychosocial support (94.3%) and respite care (74.3%). Rapid response (within 4 hours) was available in 65.7%; hands-on care 24 hours a day in 52.5%. Charity donations were the main source of funding for 71.2%. Key enablers for service provision included working with local services (e.g. district nursing, GP services), integrated health records, funding and anticipatory care planning. Access to timely medication and equipment was critical. CONCLUSION: There is considerable variation in HAH services in England. Due to this variation it was not possible to categorise services into delivery types. Services work to supplement local care using a flexible approach benefitting from integration and funding. Further work defining service features related to patient and/or carer outcomes would support future service development.

Holdsworth, L. M., Gage, H., Williams, P. and Butler, C. (2018) 'Adaptation of the Ambulatory and Home Care Record for collecting palliative care service utilization data from family carers in the UK: a pilot study', Pilot and Feasibility Studies. Springer, pp. 1-10. doi: 10.1186/s40814-018-0332-2.

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Background: Measuring service use and costs is an important aspect of service delivery evaluation. In end-of-life care, there is heavy reliance on care by family/friends (informal carers) and this should be reflected in the total cost of care alongside formal services. The Ambulatory and Home Care Record, developed in Canada, is both comprehensive in coverage and validated for collecting data on formal and informal caring. This study aimed to adapt and pilot the Ambulatory and Home Care Record questionnaire for use in the UK within a study evaluating a new palliative care service. The objectives were to test if family carers could be recruited and assess acceptability and usability of data gathered. Methods: Single cohort pilot study using a structured telephone questionnaire carried out every other week. Family carers of patients newly added to the palliative care register or referred to hospice services in the South East of England were invited to participate by mail. Volunteers remained in the study for a maximum of six interviews or until the patient died. Results: In total, 194 carers were invited by mail to participate in the study, of which 23 (11.8%) completed at least one interview and 16 (8.2%) completed all possible interviews. Recruitment to the study was lower than anticipated, but most participants seemed to find the interviews acceptable. The modified questionnaire produced usable and relevant data for an economic evaluation of formal and informal caring costs. Conclusions: Modifications are needed to the process of recruitment as a postal recruitment strategy did not have a high response rate. The Ambulatory and Home Care Record has proved a viable tool for use in the UK setting, with a few minor modifications, and will be used in a larger study comparing hospice models.

Butler, C., Brigden, C. L., Gage, H., Williams, P., Holdsworth, L. M., Greene, K., Wee, W., Barclay, S. and Wilson, P. M. (2018) 'Optimum hospice at home services for end-of-life care: protocol of a mixed-methods study employing realist evaluation', BMJ Open. BMJ. doi: 10.1136/bmjopen-2017-021192.

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Introduction: Hospice at home (HAH) services aim to enable patients to be cared for and die in their place of choice, if that is at home, and to achieve a 'good death'. There is a considerable range of HAH services operating in England. The published evidence focuses on evaluations of individual services which vary considerably, and there is a lack of consistency in terms of the outcome measures reported. The evidence, therefore, does not provide generalisable information, so the question 'What are the features of hospice at home service models that work, for whom, and under what circumstances?' remains unanswered. The study aims to answer this question. Methods and analysis: This is a mixed-methods study in three phases informed by realist evaluation methodology. All HAH services in England will be invited to participate in a telephone survey to enable the development of a typology of services. In the second phase, case study sites representing the different service types will collect patient data and recruit carers, service managers and commissioners to gather quantitative and qualitative data about service provision and outcomes. A third phase will synthesise and refine the results through consensus workshops.

Gage, H., Holdsworth, L. M., Flannery, C., Williams, P. and Butler, C. (2015) 'Impact of a hospice rapid response service on preferred place of death, and costs', BMC Palliative Care. BMC. doi: 10.1186/s12904-015-0065-4.

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Background: Many people with a terminal illness would prefer to die at home. A new palliative rapid response service (RRS) provided by a large hospice provider in South East England was evaluated (2010) to provide evidence of impact on achieving preferred place of death and costs. The RRS was delivered by a team of trained health care assistants and available 24/7. The purpose of this study was to (i) compare the characteristics of RRS users and non-users, (ii) explore differences in the proportions of users and non-users dying in the place of their choice, (iii) monitor the whole system service utilisation of users and non-users, and compare costs. Methods: All hospice patients who died with a preferred place of death recorded during an 18 month period were included. Data (demographic, preferences for place of death) were obtained from hospice records. Dying in preferred place was modelled using stepwise logistic regression analysis. Service use data (period between referral to hospice and death) were obtained from general practitioners, community providers, hospitals, social services, hospice, and costs calculated using validated national tariffs. Results: Of 688 patients referred to the hospice when the RRS was operational, 247 (35.9 %) used it. Higher proportions of RRS users than non-users lived in their own homes with a co-resident carer (40.3 % vs. 23.7 %); more non-users lived alone or in residential care (58.8 % vs. 76.3 %). Chances of dying in the preferred place were enhanced 2.1 times by being a RRS user, compared to a non-user, and 1.5 times by having a co-resident carer, compared to living at home alone or in a care home. Total service costs did not differ between users and non-users, except when referred to hospice very close to death (users had higher costs). Conclusions: Use of the RRS was associated with increased likelihood of dying in the preferred place. The RRS is cost neutral.

Holdsworth, L. M., Gage, H., Coulton, S., King, A. and Butler, C. (2015) 'A quasi-experimental controlled evaluation of the impact of a hospice rapid response community service for end-of-life care on achievement of preferred place of death', Palliative Medicine. SAGE, pp. 817-825. doi: 10.1177/0269216315582124.

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Background: Rapid response services operating 24?h a day have been advocated in UK health policy to support dying patients at home, though there is limited evidence of their effectiveness. Aim: To assess the impact of a rapid response hospice at home service (intervention) on people dying in their preferred place, and carer quality of life, compared to usual care (control). Design: Quasi-experimental multi-centred controlled evaluation. Patient data were collected from hospice records; carers completed postal questionnaires to report quality of life, anxiety and depression. Setting and participants: Community served by one hospice (three contiguous sites) in South East England; 953 patients who died with a preferred place of death recorded and 64 carers who completed questionnaires. Results: There was no significant difference between control and intervention groups in proportions achieving preferred place of death (61.9% vs 63.0% (odds ratio: 0.949; 95% confidence interval: 0.788–1.142)). People living at home alone were less likely to die where they wanted (0.541; 95% confidence interval: 0.438–0.667). Carers in the intervention group reported worse mental health component summary scores (short form-12, p?=?0.03) than those in the control group; there were no differences in other carer outcomes. Conclusion: The addition of a rapid response hospice at home service did not have a significant impact on helping patients to die where they wanted in an area already well served by community palliative care. Recording preferences, and changes over time, is difficult and presented challenges for this study.

Butler, C., Holdsworth, L. M., Gage, H., Coulton, S. and King, A. (2014) 'Results of a controlled evaluation of a hospice rapid response community service for end of life care', BMJ Supportive & Palliative Care. The 10th Palliative Care Congress, BMJ. doi: 10.1136/bmjspcare-2014-000654.26.

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Background When faced with a life-limiting condition, most people would prefer to die at home but more than half continue to die in hospital. A 2011 systematic review concluded that there is only moderate evidence to show that home-based end of life teams reduce the likelihood of dying in hospital, though observational and descriptive studies suggest that home-based care with the capacity to respond rapidly to crises may improve the likelihood of dying at home. Aims The primary aim of the study was to assess the impact of a new rapid response service (in addition to usual hospice and community palliative care services) on patients dying in their preferred place of death (PPD). Secondary objectives were to evaluate carers' quality of life and the overall cost of providing end of life care. Methods Intervention: Hands-on care provided by trained Healthcare Assistants available day and night at 4 hours notice to support patients dying at home. Design: Quasi-experimental, multi-centred, controlled evaluation with embedded cost analysis. Results 953 patients died with a PPD recorded and 155 carers completed questionnaires. The number of people achieving their PPD was not statistically significantly different in the intervention and control groups (about 60%). Patients in the intervention group were more likely to wish to die at home and significantly more patients in the intervention group died at home. The carers of patients in the intervention group experienced more problems with their mental and emotional health than those in the control group. The rapid response service did not significantly add to the costs of providing end of life care in the intervention group compared to the control group. Conclusions Access to the rapid response service did not significantly affect whether patients died where they preferred.

Butler, C. and Holdsworth, L. M. (2013) 'Setting up a new evidence-based hospice-at-home service in England', International Journal of Palliative Nursing. MA Healthcare Limited, pp. 355-359. doi: 10.12968/ijpn.2013.19.7.355.

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A hospice service in south east England determined to develop a new hospice-at-home service to enable greater patient choice and facilitate patients dying at home, which is often a patient's preferred place. As a first step, a literature review was commissioned to establish the evidence base to inform the design of the new service. A range of research had been reported on hospice-at-home services, but the service configurations evaluated in these studies and the context in which they operated had not been described in detail. This paper briefly summarises the results of the literature review and then describes the new service that was established, including the setting and context. Experiences with the service in terms of activity, acceptability, and problems are described. The aim is to assist providers and commissioners seeking to establish or develop similar services and to help them predict the likely impact of such services.

Butler, C., Holdsworth, L. M., Coulton, S. and Gage, H. (2012) 'Evaluation of a hospice rapid response community service: a controlled evaluation', BMC Palliative Care. Biomed Central, pp. 11-16. doi: 10.1186/1472-684X-11-11.

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Abstract (provisional) Background While most people faced with a terminal illness would prefer to die at home, less than a third in England are enabled to do so with many dying in National Health Service hospitals. Patients are more likely to die at home if their carers receive professional support. Hospice rapid response teams, which provide specialist palliative care at home on a 24/7 on-call basis, are proposed as an effective way to help terminally ill patients die in their preferred place, usually at home. However, the effectiveness of rapid response teams has not been rigorously evaluated in terms of patient, carer and cost outcomes. Methods The study is a pragmatic quasi-experimental controlled trial. The primary outcome for the quantitative evaluation for patients is dying in their preferred place of death. Carers' quality of life will be evaluated using postal questionnaires sent at patient intake to the hospice service and eight months later. Carers' perceptions of care received and the patient's death will be assessed in one to one interviews at 6 to 8 months post bereavement. Service utilisation costs including the rapid response intervention will be compared to those of usual care. Discussion The study will contribute to the development of the evidence base on outcomes for patients and carers and costs of hospice rapid response teams operating in the community.

Monographs

Holdsworth, L. M., King, A., Butler, C., Gage, H. and Coulton, S. (2015) Evaluation Of Pilgrims Hospices Rapid Response Hospice At Home Service: Summary of findings March 2015. Centre for Health Services Studies. Available at: http://www.kent.ac.uk/chss/docs/Hospice-at-Home-Summary.pdf.

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When faced with a life-limiting illness, most people say they would prefer to spend the end of their lives and die at home. However, we know that about half the people with cancer or long-term illnesses still die in hospital. Fewer than a quarter die in their own home. Patients are often admitted to hospital because of a crisis such as uncontrolled symptoms, carer fear or stress, or not having medication available when needed. Community based palliative care teams can help in such situations. In 2008 Pilgrims Hospices commissioned a review of the literature to understand what kinds of home care services provide the most benefit to patients at the end of their lives and their families. Though good quality evidence was scarce, the findings of the review suggested that successful services are able to respond rapidly, focus on supporting family carers at home and are available 24 hours a day seven days a week. Following these conclusions, Pilgrims Hospices developed the Rapid Response Hospice at Home service (Hospice at Home) to support people who are at the end of life and would like to die at home. The Hospice at Home service operates in addition to established hospice community services and is staffed by healthcare assistants (HCAs) who have been trained at the hospice. The HCAs are available day and night at four hours' notice to support patients in the last days of their lives or when they experience a crisis.

Conference or workshop items

Abrahamson, V., Butler, C., Wilson, P. M., Mikelyte, R., Brigden, C. L., Silsbury, G. and Goodwin, M. (2019) 'Optimum Hospice at Home Services for End-of-Life care: realist evaluation and co-production', in. International Conference for Realist Research, Evaluation and Synthesis 2021. Available at: https://www.youtube.com/watch?v=fQX6-ka1VwU.

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Overview: Hospice at home (H@H) services aim to enable people to have a "good death" at home. While this accords with UK policy, statutory services are ill-equipped to meet this demand and there is limited evidence from the perspective of service users, as participants or co-producers, of what aspects are most helpful. Our evaluation asked what features of H@H models work, for whom, how and under what circumstances? We combined a realist evaluation with co-production embedded throughout: phase 1 - a national survey to map service provision and models of H@H care; phase 2 - qualitative and economic data collection with commissioners, service providers and patient-carer dyads; phase 3 - national consensus workshops with stakeholders. The funding application was developed in partnership with ten public members. Two of these became co-applicants, both former carers with experience of hospice services. Utilising a co-production approach, the lay co-applicants contributed to all stages of the research process and were an integral part of the project team. This paper focuses on their role in qualitative data analysis (phase 2); developing and refining programme theories and testing context-mechanism-outcome (CMO) configurations. Key points: The co-applicants initially participated in clearly delineated tasks such as commenting on patient/carer resources. At the end of phase 1, they requested greater involvement, which translated into participating in data analysis. Additional training in realist philosophy and data analysis was provided. The co-applicants attended team coding meetings. Preparation included listening to and reading carer interviews, and coded according to provisional CMOs. Co-applicants fed back at coding meetings as part of the iterative process of refining CMOs. They provided a fresh perspective on the data, reflecting on the underlying narrative that proved invaluable in helping researchers to step back from the minutiae of coding and consider the carer's perspective. Implications: Public members as an integral part of a realist research team add a different lens to interrogating CMO configurations, enhancing rigour in developing programme theories. While the process evolved overtime, we would recommend early discussions around what activities co-applicants would like to participate in, training requirements, time commitment and emotional demands.

Brigden, C. L., Goodwin, M., Sisbury, G., Rees-Roberts, M., Butler, C., Greene, K., Hayes, C., Hashem, F., Gage, H., Williams, P. and others. (2018) 'Patient and Public (PPI) Involvement in Hospice research: an example of co-production in action', in. National Association for Hospice at Home Annual Conference 2018.

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Rees-Roberts, M., Mikelyte, R., Hayes, C., Hashem, F., Brigden, C. L., Gage, H., Williams, P., Greene, K., Wee, B., Barclay, S. and others. (2017) 'Optimum Hospice at Home Services for End of Life Care (OPEL H@H): Results of survey data from hospice at home services in England', in. National Association for Hospice at Home Annual Conference 2017.

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Optimum Hospice at Home services for end of life care

What are the features of Hospice at Home models that work, for whom, and under what circumstances? Offering people a choice about where they receive their care at the end of life is central to UK policy and the numbers 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. Professor Claire Butler based at CHSS is leading a national study to answer: What are the features of Hospice at Home models that work, for whom, and under what circumstances? The project is led by the University of Kent in collaboration with the University of Cambridge, University of Surrey, Oxford University Hospitals NHS Foundation Trust, Pilgrim’s Hospice and the National Association for Hospice at Home. The project is spearheaded by a team of post-doctoral researchers based at the University of Kent and the University of Cambridge. Start date: 01/02/2017 End date: 22/03/2021 Funding: National Institute for Health Research: Health Services and Delivery Research (project 14.197.44) £760,162 More about this project: 1. Study Design The study started with a national telephone survey of all HAH services to find out about the services they provide. We contacted hospice at home service managers identified through the Hospice UK and National Association of Hospice at Home directories to take part in a survey. We asked the service managers to provide 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 had a fantastic response to our phase 1 survey with 70 HAH services taking part (see map of survey responders left). The results of this survey helped us to understand the different types of HAH services running nationally and to select a number of HAH services as case study sites for in depth investigation in Phase 2 of the project. A method called ‘realist evaluation’ is being 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. The final phase of the project (Phase 3) will involve presentation of our initial findings and discussion 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. These consensus events will help to develop our findings into guidelines for services and commissioners for developing HAH services matched to local needs. 2. How will we make sure the research is on the right track for patients and families? We are aware that the project needs to be conducted sensitively and we are experienced in undertaking research with bereaved people. We are working closely with patients and members of the public to advise us on the most sensitive approaches. Our team includes two lay co-applicants who are members of the project team and involved in co-producing the research with us. Both have experienced bereavement as a carer and they have a key role in the team to ensure a thoughtful and ethically sound approach. One of our lay co-applicants recently presented with Charlotte Brigden (Pilgrims Hospice), at the RDS South East/INVOLVE UK event in London. They showcased the OPEL H@H study as an example of public co-production in research. The project also benefits from input from independent experts and public members who sit on the Project Oversight Group for the study. This group oversees the project progress and ensures the study delivers on its objectives, produce findings relevant to the public and national healthcare services. It also ensures that the study has involved public and patient input throughout. Throughout the project we have been reviewing and documenting the PPI input in to the project and how this has changed the project and our approach over time. See a link to this overview below. PPI feedback Year 1 PPI feedback Year 2 3. How will we make the research findings available? Publication of the full and complete account of the research will be in the NIHR HS&DR Journal. This will allow the research to be freely and publically available via the NIHR journals library website. We will also publish our findings as they arise in peer reviewed journals such as BMJ, Social Science and Medicine and British Journal of General Practice to reach broad audience coverage in community services, and Health Services Journal to reach service commissioners. See below for links to what we have published so far. We will present our findings through presentations or posters at existing research forums such as the European Association of Palliative Care Congress; Clinical Research Network forums; Cicely Saunders Institute, King’s College, London; Hospice UK annual conference; National Association for Hospice at Home (NAHH) conference. See posters we have already below. Guidelines will be developed for services to help plan HAH services in the future. We also aim to engage with commissioners through the links and influence of our commissioner co-applicant, Professor Bee Wee as National Clinical Director for End of Life Care for NHS England. At the end of the project, a report and summaries for lay audiences will be produced. The draft report was submitted to NIHR on 22/3/21 and we expect it to be publicly available in early 2022. The study data will also be available to researchers and the NHS on completion in line with national and international recommendations to benefit wider society. This will also be disseminated to our research participants. In addition, dissemination of findings aimed at the public will be facilitated through links with specific organisations including the National Council for Palliative Care, Hospice UK and the National Association for Hospice at Home (NAHH). These links with National organisations may also assist with bringing the results of the research to the attention of National Policy makers. Case Study Site Newsletters: Feb 2018 May 2018 July 2018 Sept 2018 Dec 2018 Mar 2019 May 2019 June 2019 Study Publications: Hashem, F., Brigden, C., Wilson, P. and Butler, C. (2020) "Understanding what works, why and in what circumstances in Hospice at Home Services for End of Life Care: applying a realist logic of analysis to a systematically searched literature review", Palliative Medicine. Sage, pp. 16-31. doi: 10.1177/0269216319867424. Abstract | View in KAR Rees-Roberts, M., Williams, P., Hashem, F., Brigden, C., Greene, K., Gage, H., Goodwin, M., Silsbury, G., Wee, B., Barclay, S., Wilson, P. and Butler, C. (2019) "Hospice at Home services in England: a national survey", BMJ Supportive and Palliative Care. BMJ Publishing Group, pp. 1-7. doi: 10.1136/bmjspcare-2019-001818. Abstract | View in KAR Butler, C., Brigden, C., Gage, H., Williams, P., Holdsworth, L., Greene, K., Wee, W., Barclay, S. and Wilson, P. (2018) "Optimum hospice at home services for end-of-life care: protocol of a mixed-methods study employing realist evaluation", BMJ Open. BMJ. doi: 10.1136/bmjopen-2017-021192. Abstract | View in KAR Selected Conferences, posters and presentations: Abrahamson V, Butler C, Wilson P, Mikelyte R, Brigden C, Silsbury G, Goodwin M. 2021 International Conference for Realist Research, Evaluation and Synthesis. Feb 2021. Optimum Hospice at Home Services for End-of-Life care: realist evaluation and co-production. https://www.youtube.com/watch?v=fQX6-ka1VwU&feature=youtu.be Brigden C, Goodwin, M, Silsbury, G, Rees-Roberts M, Butler C, Greene K, Hayes C, Hashem F, Gage H, Williams P, Wee B, Barclay S, Wilson P, Mikelyte, R. Oct 2018. National Association for Hospice at home Annual Conference 2018. Patient and public involvement in hospice research: an example of co-production in action. PPI poster Brigden C and Silsbury G, July 2018 NIHR Research Design Service South East / INVOLVE. Co-production in the OPEL Hospice at Home Study Slides from RDS/INVOLVE UK co-production event – OPEL study project presentation Rees-Roberts M, Mikelyte R, Hayes C, Hashem F, Brigden C, Gage H, Williams P, Greene K, Wee B, Barclay S, Wilson P, Butler C. 2017. National Association for Hospice at Home annual conference 2017. Poster & presentation. Phase 1 poster Phase 1 findings A4 summary 4. Consensus Events 2020 Dates Leeds – 16 January 2020 Venue: The Met, King Street, Leeds, LS1 2HQ London – 23 January 2020 Venue: Wellcome Collection Event Spaces, 183 Euston Road, London NW1 2B Our findings were presented at two national workshops. At these workshops, we sought feedback on the implications of our findings from the audiences including members of the public, carers, HAH providers and health service commissioners. We combined all this information to assess which models of service provision are likely to lead to the best outcomes, represent best value for money and create guidelines for planning HAH services in the future. A summary of the consensus events can be found in the Phase 3 summary (pdf).

CHSS

Professor Claire Butler MA, M,B BChir, FRCP

Optimum Hospice at Home services for end of life care