Optimum models of hospice at home services for end-of-life care in England: a realist-informed mixed-methods evaluation

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.

Family carer experiences of hospice care at home: Qualitative findings from a mixed methods realist evaluation

“…24 There were no differences in background socio-demographic characteristics of participants recruited across the four models. 10…”

“…Op timum Models Of Hospice-at-home Services For E nd-Of- L ife Care (OPEL) employed a mixed methods design using realist evaluation methodology. 10 Realist methodology aims to evaluate complex interventions in the real-world setting. Evidence is presented as programme theories (key features of the service with a description of what mechanisms appear to be leading to certain outcomes).…”

“…A mixed methods approach collected quantitative data comprising information about the patient and informal/family carer on admission to hospice-at-home and outcome measures from carers post-bereavement; qualitative interview data (described here) and carer collected health economics data. 10…”

“…This lack of clarity makes sharing good practice difficult and limits evidence-based service improvements. Subsequently, our realist evaluation asked ‘What are the features of Hospice-at-home models that work, for whom and under what circumstances?’ 10 Given the breadth of the evaluation, this paper focuses on carer perspectives because their insights, as the patient’s proxy at a time when patients were often too unwell to interview provided key data, are integral to improving frontline care and service development. This paper asks:…”

What Facilitates or Hampers Living at Home With Advanced Dementia Until the End of Life? A Qualitative Study Using Retrospective Interviews Among Family Caregivers, General Practitioners, and Case Managers

“…As end-of-life care at home often involves a family caregiver, ways on how to support family caregivers, who face a variety of challenges, or involve them in the care process is an important angle of studies on end-of-life care at home (Michaels et al, 2022). The availably of health care professionals that address the needs of family caregivers was found to be one of the key makers of optimum end-of-life care for persons living at home (Butler et al, 2022).…”