If your parent or relative is in a nursing home and their condition is deteriorating, the care they receive should change — shifting from treatment and recovery to comfort, dignity, and quality of remaining life. This transition is not always communicated clearly to families, and the financial implications are often missed entirely.
This guide explains what should happen when nursing home care becomes end-of-life care, who pays (and how to access free care through fast-track CHC), what the home should provide, and what you have a right to expect.
This guide covers England only. Scotland, Wales, and Northern Ireland have different care funding systems.
Last updated: March 2026.
What Changes When Care Becomes End of Life
End-of-life care does not start on a specific day. It is a gradual shift that happens as the person's condition changes and the goals of care evolve.
Care plan review
The nursing home should conduct a care plan review when staff recognise that the person is approaching end of life. This review should involve:
- The person themselves, if they have capacity and wish to be involved
- The family or next of kin
- The GP or attending clinician
- Senior nursing staff
The purpose is to shift the care plan from maintaining health to maximising comfort. This means different decisions about medication, nutrition, mobility, and daily routine.
Medication review
A clinician should review all current medication. Drugs aimed at long-term prevention — statins, blood pressure medication, diabetes management — may be reduced or stopped if they are no longer benefiting the person and are causing discomfort (difficulty swallowing tablets, side effects, unnecessary blood tests).
Comfort medication takes priority: pain relief, anti-anxiety medication, and drugs to manage specific symptoms like nausea or breathlessness.
Palliative care team involvement
The nursing home may involve the local palliative care team — specialist doctors and nurses from the hospital or hospice who provide expert advice on symptom management. The Gold Standards Framework is a widely adopted programme that helps care homes identify residents approaching end of life and coordinate their care. This does not mean the person moves to a hospice. It means palliative expertise comes to them.
Not all nursing homes have strong links with palliative care services. If your parent's symptom management is not adequate, ask the GP to refer to the community palliative care team.
Family involvement increases
Good nursing homes recognise that the family's needs change at this stage. Communication should become more frequent. Visiting restrictions should be relaxed. Staff should proactively update you about changes in condition rather than waiting for you to ask.
Who Pays at This Stage?
This is where many families miss a significant opportunity.
Existing funding usually continues
If your parent is already funded by the council, through NHS Continuing Healthcare, or through a combination, that funding typically continues unchanged. There is no reassessment triggered by a change in prognosis.
The opportunity: fast-track CHC
If your parent has been self-funding their nursing home care and is now approaching end of life, they may qualify for fast-track NHS Continuing Healthcare. If approved, the NHS takes over all costs — including the accommodation and care fees you have been paying.
Fast-track CHC is available when someone has a rapidly deteriorating condition and a prognosis measured in weeks to months. The NHS CHC framework explains the process and eligibility criteria. A clinician — the GP, a hospital consultant, or a specialist nurse — completes a fast-track pathway tool. The decision can be made within 48 hours.
This means a family that has been paying £1,200-1,500 per week could have those costs covered by the NHS for the remaining weeks or months of their parent's life. The savings can be substantial, and the money remains in the estate.
What to do: Ask the nursing home manager or GP whether fast-track CHC is appropriate. If they are unfamiliar with the process, the community palliative care team or hospital discharge team can help initiate it.
For a full comparison of palliative care funding across all settings, see our guide to who pays for palliative care. For the CHC application process and how to appeal a refusal, see our guides to CHC eligibility and appealing a CHC decision.
NHS-Funded Nursing Care
Even if CHC is not granted, the NHS contributes £267.78 per week towards nursing home fees through NHS-Funded Nursing Care (FNC). This applies automatically to anyone receiving nursing care in a registered nursing home. If your parent is self-funding and not already receiving this contribution, check with the home — it should have been applied.
What the Nursing Home Should Provide
End-of-life care in a nursing home should be comprehensive. Here is what to expect and what to insist on if it is not happening.
A private room. If your parent is in a shared room, request a move to a private room at this stage. Most homes will accommodate this as standard practice. Privacy matters for the person, for the family, and for the dignity of the final period.
Pain and symptom management, 24 hours a day. This is the core of end-of-life nursing care. The person should not be in uncontrolled pain. If they appear uncomfortable, restless, or distressed, speak to the nursing staff immediately. Effective pain management at end of life is well understood — there is no acceptable reason for it to be inadequate.
Anticipatory medications. These are "just in case" prescriptions — pre-prescribed medication kept at the nursing home ready for immediate use if symptoms change suddenly. They typically cover pain, nausea, agitation, and secretions. Having them on-site means there is no delay waiting for a GP or pharmacy when they are needed urgently.
Emotional and spiritual support. A good nursing home offers access to chaplaincy, counselling, or spiritual care if the person or family wants it. This is not limited to religious families — many people find comfort in non-religious spiritual support or simply having someone to talk to who is not a nurse or a family member.
Flexibility for family visits. At end of life, families should be able to visit at any time, including overnight. Most nursing homes allow family members to stay in the room during the final days — providing a reclining chair, camp bed, or access to a family room. If the home restricts visiting at this stage, challenge it.
Clear communication. The nursing home should proactively tell you when things change — not wait for you to phone and ask. This includes changes in consciousness, breathing, eating, and overall condition. You should know who to call outside office hours and how quickly you will be contacted if the person's condition deteriorates suddenly.
What to Expect in the Final Weeks
Every person's experience is different, but certain physical changes are common as the body begins to shut down. Understanding these changes helps families prepare emotionally and recognise what is happening.
Reduced appetite and fluid intake. The person may stop eating and drink very little. This is a natural part of dying, not a failure of care. Forcing food or fluids at this stage can cause discomfort. The nursing home should keep the person's mouth moist and comfortable.
Increased sleeping. The person may sleep for most of the day and be difficult to rouse. Periods of wakefulness may become shorter and less frequent.
Withdrawal. The person may become less responsive, stop engaging in conversation, and appear disconnected. They may still hear you — talk to them gently even if they do not respond.
Confusion and restlessness. Some people become agitated or confused in the final days. This can be distressing to witness but is usually manageable with medication. Nursing staff should be monitoring for this and acting promptly.
Changes in breathing. Breathing may become irregular — pausing for several seconds, then resuming. Noisy breathing caused by secretions in the throat is common and sounds distressing but is not painful for the person. Medication and repositioning can help.
Cool or mottled skin. Hands, feet, and legs may feel cool to the touch and may develop a mottled or bluish appearance as circulation reduces.
The nursing home staff should explain these changes to you as they occur and reassure you about what is normal. If you feel that the person is in distress and it is not being managed, speak up immediately.
Your Rights as a Family
You are not a passive observer. You have clear rights at this stage, and exercising them is not rude — it is responsible.
Right to be informed. The nursing home must tell you about significant changes in your parent's condition. If they are not doing this proactively, ask for a named nurse or senior staff member to be your point of contact.
Right to access care records. You (or the person with Power of Attorney) can request to see the care plan, daily notes, and medication records. If the person has capacity, they must consent to this. If they lack capacity and you hold a health and welfare LPA, you have the right.
Right to challenge care. If you believe the care is inadequate — pain not managed, staff not responding, the person left uncomfortable — raise it with the home manager in writing. If the issue is not resolved, you can complain to CQC.
DNAR decisions. A Do Not Attempt Resuscitation decision should be made by the senior clinician in consultation with the patient (if they have capacity) or their family. A DNAR should never be placed on someone's records without discussion. If you discover a DNAR that you were not consulted about, raise it immediately with the home manager and the GP.
Right to be present. You have the right to be with your parent during their final hours. No nursing home should prevent this. If you are told you cannot visit or stay overnight, escalate this — it is against all guidance for end-of-life care.
If You Need to Find a Nursing Home for End of Life Care
Some families reach the end-of-life stage while the person is at home or in hospital and need to find a nursing home urgently. Not all nursing homes handle end-of-life care equally. Look for:
- Palliative care training — ask what training staff have received in end-of-life care specifically
- Specialist palliative staff — some homes have staff with specific palliative care qualifications
- Strong CQC rating on "Caring" — the CQC domain most relevant to end-of-life quality
- Links with local hospice — homes that work closely with hospice-at-home teams tend to provide better end-of-life care
- Family facilities — a home that offers overnight accommodation for families signals that they take end-of-life care seriously
Our Free Shortlist identifies nursing homes based on 156 quality factors, including specialist end-of-life capability. For a thorough check on a specific home you are considering, our Care Home Check verifies quality claims against independent data.
For a full guide to verifying any nursing home before committing, see our verification checklist.
What Should Change Now: A Family Checklist
When end-of-life care begins, ask the nursing home to confirm these five things are in place:
- Advance care plan reviewed — the person's wishes for their remaining care are documented and shared with all staff, including out-of-hours cover
- Family visiting policy relaxed — unrestricted visiting, including overnight stays, with a chair or bed provided in the room
- Named nurse assigned — one senior nurse who is your main point of contact and knows your parent's care plan in detail
- GP and hospice or palliative care team involved — specialist palliative support is active, not waiting to be requested
- Spiritual, religious, or personal needs addressed — whether that means a chaplain, a favourite piece of music, or simply a quiet room with the door closed
Sources
- Gold Standards Framework — a nationally recognised programme for identifying and coordinating end-of-life care in care homes
- NICE Quality Standard QS13: End of Life Care for Adults — the national benchmark for end-of-life care quality
- NHS: Continuing Healthcare — fast-track CHC eligibility and the application process
- CQC: End of Life Care Inspection Focus — how CQC inspects end-of-life care under the Caring domain
- NHS: Palliative and End of Life Care — overview of what palliative care involves and how to access it
Further Reading
- Who Pays for Palliative Care? Home, Hospice, and Nursing Home Compared
- End of Life Care at Home: What to Expect, Who Pays, How to Arrange
- Respite Care UK 2026: Types, Costs, and How to Arrange a Break
- Nursing Home Costs UK 2026: What You'll Pay and Who Can Help
- What Is Nursing Care in a Care Home?
- Difference Between a Care Home and a Nursing Home
- NHS Continuing Healthcare for Dementia: Eligibility and How to Apply
- How to Appeal an NHS Continuing Healthcare Decision