The short answer
- Dying at home is possible with the right team around itIt works best when the GP and district nurses are involved early, the equipment is in place, medicines are in the house, and someone is there at night.
- The nursing and medical care is freeThe GP, district nurses, the palliative care team and hospice care cost nothing. Fast-track NHS continuing healthcare can also pay for care at home.
- The hours between visits are what families arrangeNurses visit and move on. A carer booked on PrimeCarers is £18 to £25 an hour with our fee included, a night from £130, and live-in care from £1,050 a week.
- Nobody can say exactly how longThe NHS counts the last year of life as end of life, and says this cannot always be predicted. Plan for the stage your relative is in now, and ask the nurse what to expect next.
Care figures are what families pay on PrimeCarers, with our fee included. Agencies charge £28 to £35 an hour. Benefit figures are the 2026/27 ones on gov.uk.
What it means
What end-of-life care is, and when it starts
End-of-life care is the care and support a person has when they are likely to be in the last year of their life. It covers their comfort, their wishes, and help for the people looking after them.
The NHS describes end-of-life care as support for people in the last months or years of their life. A person is counted as approaching the end of life when they are likely to die within the next 12 months. That includes people with an advanced illness that cannot be cured, such as cancer, dementia or motor neurone disease, and people who are generally frail and have other conditions as well. It can be given at home, in a care home, in a hospice or in hospital, depending on what the person needs and prefers.
End-of-life care is part of palliative care, which can begin much earlier, and the two words are often used together. Palliative care, end of life care and hospice at home sets out the difference if you have been given all three terms at once. The words below are the ones you are most likely to hear from the nurses and the GP in the months ahead.
Words you may hear
- Palliative care team
- Specialist doctors and nurses who help with pain and other symptoms that are hard to control. The GP or district nurse refers you, and they advise the rest of the team.
- District nurse
- An NHS community nurse who visits at home to do the nursing: pressure care, catheters, dressings, and giving medicines by injection or through a pump.
- Hospice at home
- Your local hospice bringing its care to the house. The NHS describes hospice care as a style of care rather than a building.
- Anticipatory medicines
- Sometimes called just in case medicines. They are prescribed in advance and kept at home so a nurse can give them quickly if pain, sickness, agitation or noisy breathing start.
- Advance care plan
- A written record of what matters to your relative and how they want to be cared for, reviewed as things change.
- ReSPECT form
- A form, used in many areas, that records recommendations for emergency treatment agreed with the doctor. It is not legally binding, and it can be changed.
- Fast track
- The quick route into NHS continuing healthcare for somebody whose health is getting worse quickly and who may be nearing the end of life.
Is home possible?
Dying at home is possible, and these are the things that make it work
Whether home works depends on the arrangements around your relative as much as on the illness itself. Their wishes come first, and then the people and the equipment that make care at home possible.
The first thing is that your relative wants it. Some people are clear that they want to be at home, and some would rather be in a hospice where nurses are there all the time. Both are reasonable, and the choice can change. Choosing where to die goes through the places and what each one involves.
The second is a team that knows your relative. At home the GP has overall responsibility, and district nurses do the nursing. A specialist palliative care team and the local hospice can be involved as well. Who is in the team explains what each of them does and how to reach them.
The third is somebody in the house. The nurses visit, sometimes every day near the end, and then they go on to their next patient. For the rest of the day and night somebody has to be there, whether that is family, a paid carer, or both. This is the part that decides whether home is sustainable, and it is worth planning before it becomes urgent.
What helps care at home work
- Asking the GP early for district nurses and a palliative care referral
- A hospital bed and a pressure-relieving mattress in place before they are needed
- Anticipatory medicines prescribed and kept in the house
- The out of hours number written somewhere everyone can see it
- A plan for the nights, so the family carer can sleep
- Your relative’s wishes written down, and a copy where the nurses and paramedics can find it
What makes it harder
- Waiting until a crisis at 2am to find out who to ring
- One person doing every night alone for weeks
- Equipment ordered in the last few days, when it can take time to arrive
- Nobody knowing whether a ReSPECT form or an advance decision exists
- Assuming the nurses will stay, when they visit and then leave
- Feeling that choosing a hospice or hospital later means home has failed
Changing the plan is not a failure. If symptoms become hard to manage at home, or the family can no longer cope, a hospice bed or a hospital admission is a proper choice. The palliative care team can talk this through with you at any point.
What the NHS provides
What the NHS provides free when someone is dying at home
Everything clinical is free: the GP, the nurses, the specialist palliative care and hospice care. Some areas provide more than others, so ask the GP what is available where your relative lives.
| What they do | How to get it | |
|---|---|---|
| The GP | Has overall responsibility at home, prescribes medicines, and arranges the nurses and referrals | Ring the surgery and say what has changed |
| District nurses | Nursing at home: pressure care, catheters, dressings, and medicines by injection or a syringe pump | The GP arranges them |
| Community palliative care team | Advice on pain and symptom control, and practical and emotional support for the family | A referral from the GP, district nurse or hospital |
| Hospice care, including at home | Nursing, symptom control, family support, and bereavement support afterwards | Ask the GP or district nurse, or contact the hospice yourself |
| Equipment | A bed, a pressure mattress, a commode, a hoist, and small adaptations such as rails | Ask the district nurse, an occupational therapist or the council |
| Fast-track continuing healthcare | NHS funding for a care package, which can include personal care at home | A doctor or registered nurse completes the form |
The GP
- What they do
- Has overall responsibility at home, prescribes medicines, and arranges the nurses and referrals
- How to get it
- Ring the surgery and say what has changed
District nurses
- What they do
- Nursing at home: pressure care, catheters, dressings, and medicines by injection or a syringe pump
- How to get it
- The GP arranges them
Community palliative care team
- What they do
- Advice on pain and symptom control, and practical and emotional support for the family
- How to get it
- A referral from the GP, district nurse or hospital
Hospice care, including at home
- What they do
- Nursing, symptom control, family support, and bereavement support afterwards
- How to get it
- Ask the GP or district nurse, or contact the hospice yourself
Equipment
- What they do
- A bed, a pressure mattress, a commode, a hoist, and small adaptations such as rails
- How to get it
- Ask the district nurse, an occupational therapist or the council
Fast-track continuing healthcare
- What they do
- NHS funding for a care package, which can include personal care at home
- How to get it
- A doctor or registered nurse completes the form
The NHS says hospice care is free, paid for by a combination of NHS funding and public donation. What each hospice offers varies, so ask what yours covers.
You can look up your nearest hospices with the Hospice UK hospice care finder. A hospice will usually want a referral from a doctor or nurse, though you can contact it yourself to ask what it offers. Hospice care explained covers what a hospice does at home and on its ward.
Two charities work alongside the NHS. Marie Curie gives nursing care and support to people who are dying and their families, and has a support line and information service for anyone looking after somebody at the end of life. Macmillan Cancer Support helps people with cancer and their families. The GP or district nurse will know which of them works locally.
The hours in between
The care families arrange themselves, day and night
The NHS team visits, and it does not stay. Unless fast-track continuing healthcare is paying for a care package, the hours between visits are covered by the family, by a carer you pay for, or by both.
£18 to £25
An hour for visits
Washing, dressing, mouth care, meals and company. Agencies charge £28 to £35.
£130+
A night with a carer sleeping in the house
For when your relative needs somebody once or twice in the night.
£150+
A night with a carer awake throughout
For when they need turning, help or company through the night.
£1,050+
A week for a live-in carer
A carer living in the house. Agencies typically charge from £1,400.
What families pay on PrimeCarers, September 2026, with our fee included. Carers set their own rates.
A carer at this stage does ordinary things, carefully and often. They help with washing and dressing where your relative is lying, keep the mouth moist and comfortable, help them change position as the nurse advises, see that tablets are taken on time, and sit with them. They are not nurses. Syringe drivers, injections, anticipatory medicines and clinical decisions stay with the district nurse, the palliative team and the GP, and a carer rings the nurse when something changes. What a carer does at this stage goes through a day of care, and what carers are not allowed to do explains where the line sits.
The nights are usually the first thing to plan. Night care at the end of life explains the difference between a carer sleeping in the house and one awake all night, and live-in care at the end of life covers one carer living in the house between the nurse's visits. When you are ready to look, you can search for carers near you and compare their rates for hourly visits, nights and live-in care.
Two terms in the client contract matter at this stage. A visit you cancel is payable in full unless the reason is unplanned hospitalisation, illness, or another reason the carer agrees to. Notice to end the arrangement is 48 hours for hourly care, and for live-in care it is seven days once 168 hours have been worked, with 48 hours before that. Bank holidays are charged at one and a half times the carer's rate and Christmas Day at twice. PrimeCarers charges nothing itself to cancel, and does not set the terms between you and the carer.
Stage by stage
What to expect at each stage, who helps, and what to sort
The last year of life does not follow a timetable, and doctors and nurses say it is hard to predict. It does tend to pass through recognisable stages, and each one has its own questions. Find the stage that sounds most like now, and the guide for it.
- Last yearThe last year
- MonthsThe last months
- WeeksThe last weeks
- DaysThe last days and hours
- AfterAfter a death
The stages overlap, and everyone is different. Some people move through them over a year and some much faster, and doctors and nurses say it is hard to predict. Use the stage that sounds most like now.
The last year
Time to plan, while your relative can say what they want
What usually happens
A doctor may say the illness can no longer be cured, or that your relative could be in the last year of life. The NHS says this cannot always be predicted. Life can carry on much as before for a while, with more tiredness and more appointments.
Who helps
The GP, the hospital specialist, and the palliative care team if symptoms need it.
What to sort
- Talk about what matters to them, and where they would want to be cared for
- Write their wishes down, and ask the GP about a ReSPECT form
- Claim benefits under the special rules if a doctor or nurse thinks they apply
The guides for this stage
- Talking about dying with a parent
How to start the conversation, and what to cover while they can still tell you.
- Choosing where to die
Home, hospice, care home or hospital, what each one involves, and how to change the plan later.
- The cost of end-of-life care at home
What is free, what you can claim, and what paid help costs by the week.
- Heart failure, COPD and kidney failure at the end
Illnesses with ups and downs, where the last year is harder to recognise.
- End-stage dementia care at home
Caring for somebody who can no longer tell you what they need.
The last months
More rest, and more help with everyday things
What usually happens
Your relative may sleep more, have less energy for things they used to enjoy, and need more help with washing, dressing and getting about. There can be ups and downs, and times when things settle again for a while.
Who helps
The GP and district nurses, the community palliative care team, and the local hospice, which can care for people in their own home.
What to sort
- Ask the GP to refer you to the palliative care team and the hospice
- Ask about equipment early, such as a bed, a pressure mattress or a commode
- Start paid help for the parts of the day the family cannot cover
The guides for this stage
- The last months and weeks
The changes to expect, which ones to tell the nurse about, and how care changes with them.
- Hospice care explained
What a hospice does at home and on its ward, how to be referred, and what it costs.
The last weeks
Mostly in bed, eating less, and the nights matter more
What usually happens
Marie Curie describes needing more sleep, eating less because the body uses less energy, weakness, breathlessness and sometimes confusion. Your relative may spend most of the day in bed.
Who helps
District nurses, visiting more often. The GP or palliative team prescribes medicines to keep in the house for symptoms that may come later.
What to sort
- Ask the doctor or nurse about the fast track route to NHS continuing healthcare
- Ask whether anticipatory medicines have been prescribed, and who gives them
- Put the out of hours number where everyone can see it, and plan the nights
The guides for this stage
- Pain and symptoms at home
Pain, breathlessness, sickness and agitation, and who to ring about each.
- Eating and drinking near the end
Why appetite fades, what helps, and how to keep the mouth comfortable.
- What a carer does at this stage
Personal care, mouth care, changing position and being there at night.
- Fast-track continuing healthcare
The NHS route that can pay for care at home, and how to ask for it.
The last days and hours
Sitting with them, and keeping them comfortable
What usually happens
Hospice UK lists needing more sleep, little appetite, changes to breathing including a rattling sound, restlessness, cool or mottled skin, and losing control of the bladder or bowels. It says most of the time these changes do not mean the person is in pain.
Who helps
The district nurse, the out of hours or hospice team, and whoever is sitting with your relative.
What to sort
- Keep the mouth and lips moist, which family can help with if they wish
- Keep talking to them softly, as drowsiness does not mean they cannot hear you
- Ring the nurse if they seem to be in pain or distressed
The guides for this stage
- The last days and hours
The changes near the end, what each one means, and how to help.
- Looking after yourself at the end
Sleep, breaks, and the help that exists for the person doing the caring.
After a death
There is no need to rush
What usually happens
If the death was expected, you do not need to call 999. You can spend time with your relative before you ring anyone.
Who helps
The GP or out of hours team to confirm the death, a funeral director, the medical examiner’s office and the register office.
What to sort
- Ring the GP surgery, or the nurse or hospice number you were given
- Register the death within five days in England, counted from the medical examiner’s confirmation
- Tell the carer, and settle any visits already booked
The guide for this stage
- The first days after a death at home
Who to ring, what the medical examiner does, and registering the death.
Marie Curie is clear that not everyone has these changes, and that some people have them and do not die soon. If something new happens, or something gets worse, tell the district nurse or the GP rather than trying to judge it yourself. It is always reasonable to ring and ask.
Paying for it
Paying for care at home: the funding and benefits to ask about
Some of the money available at this stage comes quickly, and none of it arrives unless somebody asks. These are the routes to ask about, roughly in the order they help.
Fast-track NHS continuing healthcare
Free, usually within 48 hours
Attendance Allowance under the special rules
£114.60 a week, the higher rate
Carer’s Allowance for the family carer
£86.45 a week
A council needs assessment
Free to ask for
Ask about fast track as soon as your relative's health starts to change quickly, because the form has to come from a clinician and nobody may suggest it unless you do. Fast-track continuing healthcare explains who can complete the form and what to say. If it is agreed, the NHS can offer a personal health budget, which gives you more choice over who provides the care. Claim Attendance Allowance at the same time, because it is paid whatever else is agreed.
The cost of end-of-life care at home puts weekly figures on visits, nights and live-in care, and shows what is left to pay once the NHS and benefits are counted. Our current rates list each type of care.
What to do this week
Six things to do this week if your relative is coming home or getting weaker
None of these steps costs anything, and each one makes the weeks ahead easier to manage. If you only manage the first two today, that is a good start.
- 1
Ring the GP and say what has changed
TodayAsk for district nurses and a referral to the palliative care team and the hospice. Describe what is different, such as pain, weight loss or more time in bed, rather than asking for a service by name. - 2
Write down the numbers you will need at night
TodayThe district nurse team, the out of hours service, the hospice advice line if there is one, and NHS 111. Put them by the phone and in everyone’s mobile. - 3
Ask about anticipatory medicines
This weekNICE guidance says they should be prescribed as early as possible for people likely to need symptom control in the last days of life. Ask whether they are in the house and who will give them. - 4
Ask for equipment before it is urgent
This weekA hospital bed, a pressure-relieving mattress and a commode make care at home easier and safer. Ask the district nurse or the occupational therapist. - 5
Write their wishes down while they can tell you
When they are readyWhere they want to be, what treatment they would not want, and who should speak for them. Advance decisions and advance statements explains the forms, and talking about dying with a parent helps with the conversation. - 6
Plan the nights, and some rest for yourself
Before you are exhaustedDecide who covers which nights, and whether a carer should take some of them. Looking after yourself at the end covers sleep, breaks and help for the family carer.
Questions
Questions families ask about end-of-life care at home
Yes. The NHS says end-of-life care can be given at home, in a care home, in a hospice or in hospital, depending on the person’s needs and wishes. Home works best when the GP and district nurses are involved early, the equipment and medicines are in place, and somebody is in the house through the day and night. Choosing where to die compares the options.
The GP, district nurses, the community palliative care team and hospice care, all free. The NHS can also provide equipment, and fast-track NHS continuing healthcare can fund a care package at home for somebody whose health is getting worse quickly. What the NHS does not usually provide is somebody staying in the house between visits.
The nursing and medical care is free. If you pay for a carer yourself, carers on PrimeCarers charge £18 to £25 an hour with our fee included, from £130 for a night with a carer sleeping in the house, and from £1,050 a week for live-in care. Fast-track continuing healthcare may pay for the care instead. The cost of end-of-life care at home has the full picture.
There is no fixed length. The NHS counts somebody as approaching the end of life when they are likely to die within 12 months, and says this cannot always be predicted. Marie Curie says it is hard to estimate even for doctors and nurses. Some people are cared for over many months and some for a few weeks. Ask the GP or nurse what they are seeing now, and plan for that stage.
The number the district nurses or hospice team gave you. If you do not have one, ring NHS 111. Ask the GP surgery for the out of hours number before you need it, and keep it by the phone. For a sudden emergency that is not part of the illness, ring 999 as you would at any other time.
Not the injections, syringe drivers or anticipatory medicines. Those are given by the district nurse or the palliative team. A carer can remind your relative about tablets and hand over the ones already prescribed. Anything more needs training and your agreement, and the carer rings the nurse when symptoms change. What carers are not allowed to do explains the limits.
Yes, at any time. If symptoms become hard to control or the family cannot keep going, ask the district nurse or palliative team about a hospice bed or an admission. Hospices can also offer a short stay so the family can rest, though not every hospice does. Changing the plan is a decision about what is best now, not a failure.