Where is end of life care provided?

The person you care for may prefer to die at home or the home of a family member so that they can be with the people who love them in a familiar environment. As a family carer, it is important to discuss this with them and their GP and how it might work in practice. Some questions to consider: ​ 

• What equipment, technology, and adaptations might be needed in the home? 
• What care can be arranged and who can organise and coordinate this? This could include hospice care and palliative care at home. 
• What will be the impact of different health and social care professionals coming into the home? 
• How willing and able are you to provide the care the person needs in the home?
• Do you have the skills and training needed? 
• What happens if you don’t feel able to continue caring? Make sure you have a backup plan.

Both you and the person you care for can contact their local social services team to get support with social care needs such as personal care. You may find caring for someone challenging, so ask for your own needs assessment to look at what support you might need in your caring role. This is called a carers assessment.

Healthcare is provided free across the UK, but the person you care for may have to pay for some or all of their social care. They may be able to access social care at home for free if they have complex ongoing healthcare needs. This is called NHS continuing healthcare. If their condition is getting worse quickly and they might be nearing the end of their life, they may be given NHS continuing healthcare on a fast-track basis. See paying for care for more information. 

When thinking with the person you care about where to receive end of life care go to Choosing where to be cared for.

You may think that a hospice can only provide care when someone is about to die. This is a myth; as hospices can provide care for anyone with a terminal illness, sometimes from the time they receive a terminal diagnosis. In other words, hospices provide palliative care including end of life care.

The person you care for may not necessarily stay in the hospice. This will depend on their situation. They might stay at the hospice as an inpatient while they need specialist care, and then return home. Some people stay in a hospice in the last weeks or days of their life. Some hospices will offer day care, where the patient visits the hospice to use their services but doesn’t stay. Some hospices offer care in a patient’s home.

Hospices are staffed by a team of health and social care professionals, including:

• nurses and doctors
• physiotherapists
• occupational therapists
• complementary therapists
• social care workers
• chaplaincy services

They will work alongside others involved in somebody’s care such as their GP, community nurses, hospital consultants, and nurse specialists.

Hospice care is free, and paid for through a combination of NHS funding and public donation. You can contact a hospice directly, but the team will usually also ask for a referral from a doctor or nurse involved in the patient’s care.

Find your local hospice or visit Hospice UK.

The person you care for may suddenly become unwell and need tests or treatment. They may be referred to hospital by their GP or they may need to go into hospital in an emergency. Decisions about their end of life care may be made by staff in Accident and Emergency or by an assessment unit or ward. The hospital may have a palliative care unit or team where staff will help to control symptoms and provide emotional support and information for the person you care for and you, as their carer.

In a care home there are care staff who look after their residents 24 hours a day. The staff are professional care workers but they are not qualified nurses. They provide the same kind of care that you might give at home, such as help with washing and dressing, and providing meals. Care homes usually offer long-stay care, but they may also offer short-stay or respite care, giving you a break from caring.

A nursing home is like a care home, but there are qualified nurses on duty. If the person you care for requires frequent nursing care, then this type of home may be more suitable for them.

Your local social care teams/services and social care workers can help you organise both types of residential care. It can take some time as there may not always be space in your preferred home when you need it.

The person you care for may be eligible for funded residential care under the NHS continuing health care scheme. If they are not eligible for this then they may be able to get help with funding. Their local social care teams/services and social care workers will assess their needs and finances to see how much the local authority will pay and how much they will need to pay themselves. See funding end of life care for more information.