This is a plain English summary of an original research article. The views expressed are those of the author(s) and reviewer(s) at the time of publication.
Hospice at home provides end-of-life care for people who would like to die at home. A review in England found that these services support a good death (as reported by the bereaved carer) and enable most people to die in their preferred location (usually at home).
To explore the breadth and quality of services in England, researchers carried out a survey of 70 services. They found variation in services’ size, staffing arrangements, and provision of care. They analysed 12 services in depth and interviewed 76 bereaved family members or carers, and 85 service providers and commissioners. The study found that most people had a good experience of care.
The researchers suggest that services could often be improved by better integrating them within local health services, reviewing their statutory funding arrangements, and making greater use of volunteers. Bereaved carers expressed a need for support from the staff they had come to know (instead of from someone new).
For more information about hospice at home services, visit the NHS website.
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engaging volunteers in a wider range of roles
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improved bereavement support for carers
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better integration and co-operation with local health services
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increased support from local commissioners, including more sustainable funding.
The issue: how good are hospice at home services?
Many people receiving end of life care would like to die at home; hospice at home services provide the support they need. Their staff are experienced and confident in dealing with death and dying; they offer help with personal care and vital emotional support. Hospice at home services are becoming increasingly important as more people choose to die at home; they want to have a peaceful and comfortable, good death.
A range of services exist, but before this study, they had not been comprehensively evaluated. This study aimed to find out what aspects of different hospice at home services work best, for whom and in what circumstances.
What’s new?
The survey included 70 hospice at home services in England. Researchers examined the main service models. They found differences in the size of services, who was eligible for care, how they were funded, what care was provided and if it was 24/7. Most (2 in 3) services were mainly charitably funded.
The researchers chose 12 services that represented 4 different models of care: big (more than 365 referrals per year) or small (fewer referrals than this); and with or without 24/7, round the clock services. The researchers interviewed 76 bereaved family members or carers from these 12 services about the care they and their loved ones received. 85 providers and commissioners were also interviewed.
Most people (77%) receiving hospice at home had cancer. The typical period of care was between 1 week and 2 months but some received care for a few hours and others for more than a year.
The study found that hospice at home services:
- provided care that was likely to enable a good death
- allowed almost 3 in 4 (73%) people to die in their preferred place (usually home or hospice)
- provided excellent help and support (rated by carers).
To confirm what people most valued about hospice at home, the researchers discussed their findings with 88 people (including service providers, commissioners, and members of the public) at 2 workshops.
People most valued:
- staff who provide hands-on care, such as washing, turning and toileting
- staff who are knowledgeable and confident in providing support to people at the end of life
- support for families and carers.
Why is this important?
Hospice at home services deliver high-quality care and can support a good death. Most people died in their preferred place (usually at home); most had good experiences of care.
The variety of services was previously not well understood. The researchers described 4 different models of hospice at home services: large and small, and with or without 24/7, round the clock services. Smaller services responded quickly to patient needs, provided intense care, and worked closely with other services; they tended to deliver better outcomes. Larger services offered earlier interventions and a wider breadth of services. The study was not set up to conclude which model of care was best, but to understand the factors in each service that resulted in the best care for patients.
The study included only people who had a family member or carer supporting them on a daily basis; the findings may not accurately represent the care received by others. Fewer people than anticipated responded to the final questionnaire. In addition, the questionnaire was only available in English so may have excluded those with little or no English.
What’s next?
The researchers made suggestions which could improve services. These include:
- engaging volunteers by considering a wider range of roles (for example, social support, befriending, neighbourliness); concerns about patient safety and accountability made services reluctant to take on volunteers (especially for people close to death)
- improved bereavement support for carers, delivered by people involved in their loved one’s care
- better integration and co-operation with local health services could increase the numbers of people who receive hospice at home services; this could include anyone with a progressive, life-limiting condition (not just cancer)
- increased support from local commissioners, including more sustainable funding.
The researchers are carrying out a follow-up study on how the use of online resources could improve services.
You may be interested to read
This summary is based on: Butler C, and others. Optimum models of hospice at home services for end-of-life care in England: a realist-informed mixed-methods evaluation. Health and Social Care Delivery Research 2022; 10: 1–346.
A tool from Hospice UK to locate hospice at home services in your area.
A review of literature about hospice at home services: Hashem F, and others. 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 2020; 34: 16–31.
The survey of hospice at home services from this study: Rees-Roberts M, and others. Hospice at Home services in England: a national survey. BMJ Supportive & Palliative Care 2019; 11: 454–460.
Funding: The study was funded by the NIHR Health and Social Care Delivery Research programme.
Conflicts of Interest: View the original paper for the authors’ conflicts of interest.
Disclaimer: Summaries on NIHR Evidence are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that the views expressed are those of the author(s) and reviewer(s) at the time of publication. They do not necessarily reflect the views of the NHS, the NIHR or the Department of Health and Social Care.
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