End of Life Care at Home: What to Expect and Who Pays

End of life care at home can be free through three routes: fast-track NHS Continuing Healthcare (approved within 48 hours), hospice-at-home charity services, or council-funded care if savings are below £23,250. Private palliative home care costs approximately £145-220 per day.

This guide covers England only. Scotland, Wales, and Northern Ireland have different care funding systems.

Last updated: March 2026.

If someone you love is dying and you want them to be at home, you deserve clear information — not vague reassurances and not a maze of bureaucracy. This guide explains what end of life care at home actually involves, who provides it, how to fund it (including a route most families never hear about), and what to expect as things change.

You are not expected to do this alone. A network of professionals exists to support dying at home, and much of it is free. The problem is that nobody tells you this clearly or early enough.

What End of Life Care at Home Actually Involves

End of life care — sometimes called palliative care — is the point where the focus shifts from trying to cure an illness to keeping the person comfortable, dignified, and as free from pain as possible. NICE quality standard QS13 sets the national benchmark for what good end-of-life care looks like. This is not giving up. It is a deliberate, skilled form of care.

What the care covers

Pain and symptom management is the foundation. A palliative care team — usually led by a consultant or specialist nurse — will manage pain relief, nausea, breathlessness, anxiety, and agitation. Medication is adjusted as needs change, often daily towards the end.

Personal care includes washing, dressing, continence care, mouth care, and repositioning to prevent pressure sores. This is physically demanding work and is usually provided by trained carers or district nurses.

Emotional and spiritual support is part of the package, not an afterthought. This might come from the palliative care team, a hospice counsellor, a chaplain, or a specialist bereavement service. It extends to family members too.

Who provides it

You will not be doing this alone. A typical team for end of life care at home includes:

• GP — oversees medication, signs prescriptions, coordinates with the wider team
• District nurses — visit regularly (sometimes daily) to administer medication, change dressings, and monitor symptoms
• Palliative care team — specialist nurses and consultants from the local hospice or hospital, available for advice and crisis support
• Hospice-at-home team — trained carers and nurses who provide hands-on care in your home, often covering nights or crisis periods
• Home care agency — personal carers for daily washing, dressing, and companionship
• Occupational therapist — arranges equipment such as hospital beds and hoists

The challenge is that these services are not always well coordinated. You may need to be the person who connects them, at least initially. Ask the GP or district nurse to make a referral to the local palliative care team early — ideally weeks before you think you will need them.

The Fact Most Families Don't Know: Fast-Track NHS Funding

This is the single most important piece of information in this guide, and the one most families discover too late — or never at all.

If someone has a terminal illness and is expected to die within approximately 12 months, they can qualify for fast-track NHS Continuing Healthcare (CHC). This covers the full cost of all care — at home, in a care home, or in a hospice — with no means test and no financial assessment. It does not matter how much money or property they have.

How fast-track CHC works

1. A GP, hospital consultant, or palliative care nurse completes a fast-track application form (DST — Decision Support Tool is not required for fast-track)
2. The application goes to the local Integrated Care Board (ICB)
3. The ICB should approve or reject it within 48 hours — and in practice, many are approved within 24 hours
4. Once approved, the NHS pays for all care. This includes home carers, night sitters, equipment, and nursing visits

Why families miss this

The reasons are consistent and frustrating:

• Nobody tells them. GPs and hospital discharge teams do not always mention fast-track CHC, even when the person clearly qualifies
• Families assume they have to pay. The means test (the £23,250 threshold) is so widely discussed that many families believe all care is means-tested. Fast-track CHC has no means test at all
• The person is already self-funding. If a family has been paying for care privately, there is no automatic trigger to reassess. The family must ask
• The prognosis is uncertain. Some clinicians are reluctant to state a prognosis of under 12 months, even when it is clinically appropriate

What to do right now

If your loved one has a terminal diagnosis:

1. Ask the GP or consultant directly: "Does this person qualify for fast-track NHS Continuing Healthcare?"
2. If they are unsure, ask them to contact the local palliative care team for guidance
3. If the application is refused, you have the right to appeal — see our guide on how to appeal a CHC rejection
4. If your loved one has dementia alongside a terminal illness, the eligibility criteria may overlap — read more about dementia and NHS Continuing Healthcare

Do not wait. Every week of delay is a week the family pays for care that should be free.

Is End of Life Care at Home Free?

There are six main funding routes for end of life care at home. Most families qualify for at least one.

A note on combining funding

These routes are not mutually exclusive in all cases. A family might receive hospice-at-home visits for free while also paying privately for a daily carer. If fast-track CHC is approved, it replaces private funding entirely — the NHS takes over all costs from the approval date.

If you are currently self-funding and believe CHC should apply, ask for a retrospective review. The NHS can reimburse care costs dating back to when the person should have qualified.

For a broader view of all care funding options, see our care home funding eligibility guide.

Not sure which funding routes apply to your situation? Our Funding Guide provides a personalised breakdown of every option available to you, based on your specific circumstances.

What to Expect Week by Week

Every person's experience is different, but there are common patterns. Knowing what to expect can help you prepare practically and emotionally. None of this is meant to alarm you — it is meant to help you feel less frightened when changes happen.

Weeks to months before death

This is often the longest phase. The person may still be mobile, eating, and having good days mixed with bad days.

• Care visits increase gradually. You might start with a carer visiting once a day, then twice, then more frequently
• Medication adjustments become more frequent. Pain relief may be increased or changed. A syringe driver (a small pump that delivers medication continuously) may be discussed
• Energy declines. The person sleeps more, does less, and may lose interest in activities they previously enjoyed
• Appetite reduces. This is normal and expected. Forcing food does not help and can cause discomfort

Days to weeks before death

Changes become more noticeable. The palliative care team will usually increase their visits at this stage.

• The person spends most of the day sleeping or resting
• Eating and drinking reduce significantly — sometimes to sips of water or mouth care only
• Confusion or restlessness may occur, particularly in the evenings. This is sometimes called terminal agitation and can be managed with medication
• Skin colour may change — becoming pale, mottled, or slightly blue at the extremities
• The person may become withdrawn or less responsive, even when awake

The final days

This is the phase families find hardest, partly because it feels so different from what they expected.

• Breathing changes. It may become irregular, with pauses (called Cheyne-Stokes breathing) or a rattling sound caused by fluid in the throat. This sounds distressing but is not usually painful for the person
• The person may not respond to voices or touch, though hearing is believed to be one of the last senses to go
• Anticipatory medications (the "just in case" box) will already be in the home. A district nurse can administer these for pain, nausea, anxiety, or excess secretions
• You do not need to do anything medical. Your role is to be present, to talk if you want to, and to keep the environment calm

When death occurs at home, you do not need to call 999. Call the GP surgery or the out-of-hours number. A doctor or nurse will come to confirm the death and issue a medical certificate. There is no rush — you can spend as much time with the person as you need.

Practical Arrangements

Getting these details sorted in advance makes an enormous difference when things become more difficult. None of this needs to happen in a single day.

Equipment the NHS provides free

The NHS will supply essential equipment at no cost. An occupational therapist or district nurse arranges this, and delivery is usually within 24-48 hours.

• Hospital-style bed — adjustable height and back support, making care easier and the person more comfortable
• Pressure-relieving mattress — prevents pressure sores for people who are bed-bound
• Commode — for when the toilet is too far or the person is too weak
• Hoist — if the person cannot move independently and needs lifting
• Syringe driver — a small pump worn on the body that delivers continuous pain relief and anti-nausea medication

You do not need to buy any of this. If anyone suggests you should, ask the district nurse to arrange NHS provision instead.

The "just in case" box

The palliative care team will prescribe a set of anticipatory medications — sometimes called the "just in case" box — that are kept in your home. These typically include medication for pain, nausea, agitation, and excess secretions.

The medications are prescribed in advance so that if symptoms develop suddenly — at night, over a weekend, or when the GP is unavailable — a district nurse can administer them immediately without waiting for a new prescription.

Keep these medications in a safe, accessible place. The district nurse will show you where they are and explain when each might be used.

Out-of-hours contacts

Before you need them, write down and keep visible:

• District nursing out-of-hours number — for symptom management at night or weekends
• Palliative care advice line — many hospices run a 24-hour phone line
• GP out-of-hours service — usually via NHS 111
• The person's NHS number — speeds up every phone call

Advance decisions and DNAR

If these conversations have not already happened, now is the time.

• DNAR (Do Not Attempt Resuscitation) — a clinical decision, made with the person or family, that CPR will not be attempted. This is a kindness, not an abandonment. CPR is extremely unlikely to work for someone who is dying of a terminal illness, and attempting it causes distress
• Advance Decision to Refuse Treatment (ADRT) — a legal document specifying treatments the person does not want (e.g., ventilation, tube feeding)
• Lasting Power of Attorney for Health and Welfare — allows a named person to make decisions if the person loses capacity

The palliative care team or GP can help with all of these. They should be recorded on the person's medical notes and a copy kept at home.

Telling the family

There is no perfect way to do this. But families consistently say it helped to:

• Be honest about the prognosis — including with children, using age-appropriate language
• Give people the choice of when and how to visit
• Designate one person as the main contact for updates, to avoid repeating difficult information
• Accept that not everyone will respond the way you hope

What If End of Life Care at Home Is No Longer Possible?

Sometimes caring at home is no longer safe or sustainable — because symptoms become too complex, because the main carer is exhausted, or because the home environment cannot support the level of care needed. Choosing an alternative does not mean you have failed. It means you are making the best decision with the information you have.

Hospice

Hospices provide specialist palliative care in a calm, supported environment. Care in a hospice is free — it is funded by the NHS and charitable donations. The limitation is availability: hospice beds are limited, and admission is based on clinical need. A GP or palliative care team can make a referral.

For families weighing up whether home-based care or a care home is the better option, our guide on home care vs care home compares the two approaches. If live-in care is being considered, it is worth understanding the costs involved before committing.

Nursing home with palliative care experience

Some nursing homes have dedicated palliative care expertise and can provide excellent end of life care. This may be the right option if the person needs 24-hour nursing but does not meet hospice admission criteria.

If fast-track CHC has been approved, the NHS pays the full cost of a nursing home placement — you do not pay anything. If CHC does not apply, nursing home costs are means-tested using the same thresholds as residential care.

If you are looking for a nursing home with palliative care experience, our Free Shortlist can help you identify homes in your area that match your needs.

Hospital

Hospital is generally the least preferred option for end of life care. It is noisy, lacks privacy, and the person is surrounded by acute medical activity rather than comfort-focused care. However, if symptoms cannot be controlled at home and no hospice bed is available, a hospital admission may be necessary as a short-term measure.

Support for You as a Family Member

Caring for someone who is dying is one of the hardest things a person can do. The exhaustion is physical, emotional, and administrative — and it does not end when the person dies.

Practical support available now

• Marie Curie Support Line: 0800 090 2309 (open 8am-11pm, every day). Free, confidential support for anyone affected by dying, death, or bereavement
• Cruse Bereavement Care: 0808 808 1677 (Monday-Friday, 9:30am-5pm). Free bereavement counselling and support
• Carer's Allowance: If you provide care for at least 35 hours a week, you may be entitled to £86.45 per week (2026/27 rate). You can claim even during end of life care
• Right to emergency leave from work: You have a legal right to take reasonable unpaid time off to deal with an emergency involving a dependant. Some employers offer compassionate leave — check your contract or HR department

After the death

You do not need to do anything immediately. There is no legal requirement to act within hours.

When you are ready:

1. A doctor will confirm the death and issue a Medical Certificate of Cause of Death (MCCD)
2. You will need to register the death within 5 days at the local registry office
3. A funeral director can help with practical arrangements — you do not have to use the first one suggested to you
4. If fast-track CHC was in place, notify the ICB that care has ended
5. Tell Me Once — a government service (available through the registry office) that notifies multiple government departments of the death in a single step

A word about grief

Grief does not follow a schedule. You may feel relief, guilt, anger, numbness, or all of these at once. None of these responses is wrong.

If the person had dementia, you may have been grieving for months or years before the death — this is sometimes called anticipatory grief, and it does not make the actual death any easier.

Professional bereavement support is available free through your GP, through hospice bereavement services, and through the phone lines listed above. You do not have to be "struggling" to access them. They are there for anyone who has been through this.

The First 48 Hours After a Fast-Track CHC Referral

Sources

• NHS: Continuing Healthcare — how fast-track CHC works and eligibility criteria
• NICE Quality Standard QS13: End of Life Care for Adults — the national standard for end-of-life care quality
• Marie Curie: End of Life Care — free support and practical guidance for families
• Macmillan Cancer Support: End of Life Care — information on palliative care, funding, and what to expect
• GOV.UK: Carer's Allowance — eligibility and how to claim while providing end-of-life care

Further Reading

• Home Care vs Care Home: Which Is Right?
• Live-In Care: A Complete UK Guide
• Home Care Costs in 2026
• Care Home Funding Eligibility Guide

This guide is for information only and does not constitute medical or legal advice. If you need urgent help with end of life care, contact your GP or call the Marie Curie Support Line on 0800 090 2309.