When people who require their care to be at home and who wish to die at home, search for information online, they often come across websites such as NHS England's Care at home: end-of-life care.
They are presented with the following information and, I quote directly:
‘You may not need to move away from home to receive care, as end of life and hospice care can be provided at home. To find out what's available locally, ask your GP. Your GP can arrange for community nurses to come to your home and provide nursing care for you there. You may also need specialist care from community palliative care nurses who visit you at home to:
- provide or arrange hands-on nursing or personal care, if you need it
- advise on pain and symptom control
- provide practical and emotional support for you and your carers at home.
They can also involve other specialist professionals in your care, if their expertise is needed. Your local authority's social services department may provide a range of services and equipment to help you remain at home as you approach the end of life. This could include home adaptations, such as handrails’.
The information is based on the well-established Hospice at Home (H@H) services, which provide end-of-life care for anyone wishing to be cared for, and even die, in their own home. There are different models used to achieve this, including support from hospice teams, community and district teams, GP and many other services are at their disposal to access. However, there seems to be a lack of evidence from a review or evaluation of the service to inform or confirm whether the service provision is effective. Hence, Butler et al (2022) carried out a realist-informed mixed methods evaluation of the H@H service.
Hospice at Home service provision
The evaluation had three phases, and this column focusses on phase 1, which surveyed 70 H@H services across England. The study found that, although most people reported positive experiences, there were variations in services including sizes, care provision, and staffing requirements to facilitate the service. The evaluation looked at the impact the service had on those left behind (bereaved), the informal carers and health care professionals.
The researchers suggested 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 someone new).
The researchers made suggestions, which could improve services. Butler et al's (2022) recommendations were:
- Engaging volunteers by considering a wider range of roles (e.g. 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 H@H services; this could include anyone with a progressive, life-limiting condition (not just cancer)
- Increased support from local commissioners, including more sustainable funding.
The idea of using volunteers is not new, and Butler et al (2022) rightly pointed out some of the ‘dangers’ inherent in such practice. It is also important to recognise that the use of volunteers may benefit dying people; however, their input may be a continuation of cheap labour by the NHS as they do not get any remuneration. Volunteering to care for your own friend or relative deprives them of being individuals who need to share their own grief, and prepare for bereavement that follows. This is not easy, and volunteers cannot simply switch off these emotions and feelings. Hospices use volunteers partly because they do not have adequate funding from the government to employ paid staff. Two thirds of hospice funding is through the generosity of the charity sector. Current and past governments have taken advantage of a philanthropic society, and withheld funding for hospices. This practice is long overdue a change and volunteers should not be a cheap replacement for a qualified expert workforce.
H@H provides a much-needed service, which meets the needs of dying people while respecting their wishes. Arguably, this also benefits friends and family to have their loved one cared for, and even die at home. For the government, H@H is financially less burdensome, and may see no need to alter the status quo. This should change and volunteers and family caregivers should initially be paid an honorarium until a workable pay structure is agreed upon.
Finally, it is important to ensure that H@H service is offered equitably, as people who are dying encounter the same psychological, emotional and spiritual concerns.