End of life care at home is coordinated by the GP and delivered day to day by district nurses, with care workers for personal care, hospice at home or Marie Curie nurses for extra support and night sitting, and family doing much of the rest. The NHS provides the medical and nursing care, equipment and medicines free. With a plan in place, most symptoms can be managed at home and most people who want to die at home can.
If you are arranging this now, the Marie Curie support line (0800 090 2309) can talk you through it, and the district nurses or GP can start the referrals.
Key facts
| Question | Answer |
|---|---|
| Who leads | The GP, with district nurses visiting regularly |
| Extra support | Hospice at home, Marie Curie nurses, night sitters, care workers, the specialist palliative care team |
| Equipment | Hospital bed, mattress, commode, hoist and more, usually free through district nurses or an occupational therapist |
| Medicines | “Just in case” injectable medicines kept at home so symptoms can be treated day or night |
| Funding | NHS care free; personal care means-tested unless fast-track NHS continuing healthcare applies |
Who does what at home?
The GP. Responsible for the person’s medical care, prescribing, visiting when needed, and completing the paperwork that lets other services start. Ask the practice which GP is leading and how to reach them.
District nurses. The backbone of care at home. They visit to give medicines and injections, manage syringe pumps, dress wounds, prevent pressure sores, arrange equipment, teach family what to do, and are usually the first call when something changes. Visits range from weekly to several times a day as needs increase. Most areas have a district nursing service that runs evenings and nights too.
The specialist palliative care team. Doctors and clinical nurse specialists from the local hospice or hospital who advise on complex symptoms, visit when needed, and can arrange a hospice bed if home stops working.
Care workers. For personal care: washing, dressing, toileting, moving, meals. From an agency arranged by the council (means-tested), by the NHS under continuing healthcare, or privately. Visits are usually 30 to 60 minutes, two to four times a day.
Hospice at home. Many hospices run a service that brings hospice nursing into the home: hands-on care, symptom management, night sits, and support for the family. Free, by referral. Coverage and what is offered vary widely by hospice. Endoflifecare.uk lists 46 hospice at home services and 830 palliative home care services.
Marie Curie nurses and healthcare assistants. In many areas Marie Curie provides overnight care at home for people in the last weeks of life, usually eight or nine hours, free, arranged through the district nurses. There is also a rapid response service in some areas.
Occupational therapists for equipment and adaptations; physiotherapists for breathing and mobility; social workers for care arrangements and support for the family; pharmacists for medicines, including delivery.
Family and friends. Whatever the formal services provide, family usually do the most: the hours between visits, the nights, the meals, the company. This is hard, and it is normal to need breaks. Ask about respite and about carer’s support; the carer’s own GP can help with the toll it takes.
What equipment is provided?
Usually through the district nurses or an occupational therapist, free, delivered and collected by the local equipment service:
- A hospital bed (profiling bed) with a pressure-relieving mattress, which makes care far easier and prevents pressure sores. Often placed downstairs.
- A commode, a urine bottle, incontinence pads.
- A hoist or slide sheets for moving the person safely.
- A riser-recliner chair, a wheelchair, a walking frame.
- A syringe pump (driver) for continuous medicine under the skin, managed by the nurses.
- Oxygen, if prescribed.
Ask for the bed early; waiting lists exist and it changes everything.
What medicines are kept at home?
Towards the end of life the GP usually prescribes “anticipatory” or “just in case” medicines: injectable medicines for pain, breathlessness, sickness, agitation and chest secretions, kept in the house so that a nurse can give them promptly if symptoms arise, including at night. They are not a sign that the end is imminent; they are a sign of good planning.
When the person can no longer swallow, medicines are given by injection or through a syringe pump that delivers a steady dose under the skin over 24 hours. The nurses set it up and check it daily.
Who do you call at 3am?
This is the question to have answered before it is needed. Ask the district nurses for the out-of-hours nursing number and the GP practice for the out-of-hours GP route (usually through NHS 111, but some areas have a palliative care line). Write both numbers on the fridge. Ask whether the person is on the area’s electronic palliative care register, which lets out-of-hours staff see their wishes and plan.
If the person has a ReSPECT form or DNACPR, keep it where paramedics can see it. Without it, a 999 call may lead to resuscitation and a hospital admission the person did not want.
What does a typical day look like?
In the last weeks: a care worker in the morning for washing and dressing; a district nurse visit for medicines; family or a friend during the day; a care worker at teatime and bedtime; a night sitter two or three nights a week if available, and family the other nights. In the last days: more frequent nurse visits, a syringe pump, less waking time, and a shift from caring for the person’s needs to simply being with them.
When home stops working
Sometimes symptoms cannot be controlled at home, or the family cannot cope, or the person changes their mind. None of these is a failure. The palliative care team can arrange a hospice bed, and a nursing home that provides end of life care is another option. Our guides to hospice care and choosing a nursing home for end of life care cover both.
Who pays?
NHS services are free: GP, district nurses, palliative care team, hospice at home, Marie Curie, equipment, medicines. Care workers for personal care are means-tested through the council unless the person qualifies for NHS continuing healthcare. People whose condition is deteriorating rapidly and who may be nearing the end of life should be considered for the fast-track pathway, under which the NHS funds the whole care package and it should start within 48 hours. Ask the district nurse or GP to complete the fast-track tool. Our guide to who pays for end of life care explains the rules, including the differences in Scotland, Wales and Northern Ireland.
Private care at home is also available, from agencies and self-employed carers, at typically £25 to £35 an hour for visiting care and £1,200 to £2,000 a week for live-in care (prices vary widely by area). Some families use it to fill the gaps the NHS and council do not.
Help that is free
- Marie Curie support line: 0800 090 2309, every day.
- Macmillan Cancer Support: 0808 808 00 00.
- Carers UK: 0808 808 7777, for the people doing the caring.
- Hospice UK: hospice finder, including hospice at home services.
- NHS 111 for urgent health concerns out of hours.
Finding a service
Endoflifecare.uk lists 830 palliative home care services and 46 hospice at home services across the UK, with the regulator’s registration and rating where one exists (checked October 2026). Home care agencies in England are registered and rated by the Care Quality Commission; our guide to regulator ratings explains what the ratings mean. NHS and hospice services are arranged through the GP or district nurses rather than booked directly.
What do you do when someone is dying at home?
Call the number on the care plan. Every planned death at home should have a plan with a 24-hour number for the district nursing or hospice at home team, the GP’s out-of-hours arrangement, and the medicines already in the house. If breathing changes, pain or distress increases, or you are frightened, ring that number day or night; do not call 999 unless the plan says to, because an ambulance crew without the plan may be obliged to attempt resuscitation and take the person to hospital. Keep the room calm, the person’s mouth moist with swabs, and their position comfortable, and sit with them: hearing is thought to be the last sense to go. When the person dies, there is no hurry. Call the GP or district nurse to verify the death, which can take a few hours at night; then the funeral director, whenever you are ready. Marie Curie’s support line is free to call at any point for advice on what you are seeing.
Sources
- NHS: Where you can have end of life care
- NHS: NHS continuing healthcare (fast-track pathway)
- Marie Curie: Being cared for at home
- NICE: Care of dying adults in the last days of life (NG31) (anticipatory medicines)
- Hospice UK: Hospice care finder