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 52.2%. Charity donations were the main source of funding for 71.2%. Key enablers for service provision included working with local services (eg, district nursing, general practitioner 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.
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.
ETHICS AND DISSEMINATION: The first survey phase has university ethics approval and the second phase, Integrated Research Application System (IRAS) and Health Research Authority (HRA) approval (IRAS ID:205986, REC:17/LO/0880); the third phase does not require ethics approval. Dissemination will be facilitated by project coapplicants with established connections to national policy-making forums, in addition to publications, conference presentations and reports targeted to service providers and commissioners.
L'association NAHH (National Association for Hospice at Home - association nationale de soins palliatifs à domicile) représente l'ensemble des services de soins palliatifs fournis au domicile des patients jusqu'à la fin de leur vie. Ces services traversent des temps difficiles et l'organisme de bienfaisance leur apporte le soutien et l'appui adéquats.