Later Stage

For family carers who are moving into the later stages of a loved one’s illness — and who need honest, compassionate, practical information to help them navigate what lies ahead. This guide won’t make this easy. Nothing can. But it will make sure you know what’s available, what to ask for, and that you don’t have to work it out alone.

There is a particular kind of exhaustion that comes with caring in the later stages of a serious illness.

It isn’t just the physical tiredness — though that is real and it is relentless. It is the weight of knowing that what is coming is coming, and not knowing when, and holding that knowledge while still doing all the things that need to be done today.

It is the grief that lives alongside the love. The fear that sits beside the courage. The uncertainty about whether you are doing enough, doing the right things, making the right decisions — when the stakes have never felt higher.

If you are in this place, this guide is for you. Not to make it easier — there are some things that cannot be made easy. But to make sure you know what is available, what questions to ask, and that the support you need exists and is yours to access.

1. End of life planning — having the conversations that matter

The conversations about end of life are the ones most families avoid the longest — and the ones they most wish they’d had sooner.

Having these conversations while your loved one can still participate in them is one of the most meaningful gifts you can give each other. Not because it is comfortable — it isn’t — but because it means that when the time comes, the decisions will have been made by them, not for them.

What to discuss and document while there is still time:

• Where they would like to be cared for in their final days — at home, in a hospice, in a care home, or in hospital
• What treatments they would and would not want if they could no longer communicate their wishes
• Their wishes for after death — funeral preferences, organ donation, religious or cultural observances
• Practical arrangements — wills, financial affairs, who holds Power of Attorney

Write these wishes down and make sure the right people have copies — the GP, any care professionals involved, and family members who may be making decisions.

→ Download the End of Life Planning guide — free at CarersInfo

2. Palliative care — what it is and when to ask for it

Palliative care is one of the most misunderstood areas in caring. Many people believe it means giving up — that requesting palliative care means accepting death is imminent and stopping all treatment. Neither is true.

Palliative care is specialist care focused on relieving pain, managing symptoms, and improving quality of life. It can — and should — begin alongside curative or life-prolonging treatment, not instead of it. It is for anyone with a serious illness, at any stage. The evidence consistently shows that people who receive palliative care early tend to have better quality of life, better-managed symptoms, and often live longer than those who receive it only in the final days.

Palliative care can be provided at home, in a hospice, in a care home, or in hospital. It involves a team — doctors, nurses, social workers, chaplains, and others — whose focus is the whole person, not just the illness.

Ask the GP for a palliative care referral. You do not need to wait to be offered it.

→ Download the Palliative Care Options guide — free at CarersInfo

3. Managing pain and comfort

Nobody should be in unnecessary pain at the end of their life. If your loved one is in pain that is not being adequately managed, say so clearly to the medical team. Pain management is central to good palliative care and there are almost always options available.

As a carer, you are often the person best placed to notice and report changes in comfort — because you are there consistently in ways that healthcare professionals are not. Trust your observations. You know what your loved one’s normal looks like.

Signs of unmanaged pain or discomfort to report:

• Facial grimacing, furrowed brow, or distressed expression
• Restlessness, agitation, or repeated movements
• Calling out, moaning, or changes in breathing
• Resistance to being moved or touched
• Changes in sleep pattern or increased withdrawal

If you feel pain is not being adequately addressed, ask specifically to speak to the palliative care team or a pain specialist. This is a reasonable, appropriate request.

→ Download the Managing Pain and Comfort guide — free at CarersInfo

4. Communication in the later stages

As a condition progresses, verbal communication often becomes very limited or stops altogether. This does not mean connection stops.

Research consistently shows that hearing is one of the last senses to fade. Speak gently, even when you are not sure you are being heard. Say the things you want them to know. Read aloud. Play familiar music. Describe what is happening around them.

Touch remains profoundly meaningful. Hold their hand. Rest your hand on their arm. Gentle physical presence communicates what words cannot always reach.

Do not feel you need to fill the silence. Sitting quietly together, simply being present, is a form of care. It is enough.

If you are unsure how to talk about what is happening — whether to name that they are dying, or how to say goodbye — the palliative care team or a chaplain can help you find the words, or simply be with you in the not-knowing.

→ Download the Communication in Late Stages guide — free at CarersInfo

5. Eating and drinking in the later stages

Changes in eating and drinking are a natural part of the dying process. As the body slows down, its need for food and fluid reduces. This can be deeply distressing for families — the instinct to nourish someone you love is powerful, and watching them eat less or stop eating altogether feels like watching them slip away.

It is important to know that reduced eating and drinking at end of life is not the cause of dying — it is a natural part of how the body prepares. Forcing food or fluids can cause discomfort. The priority shifts from nutrition to comfort.

What helps:

• Offer small amounts of food and drink — what is enjoyed, not what is nutritionally optimal
• Keep lips and mouth moist with small sips or mouth care sponges if swallowing becomes difficult
• Follow their lead — if they turn away, don’t persist
• Ask the palliative care nurse or GP for guidance specific to your loved one’s situation

→ Download the Eating and Drinking Challenges guide — free at CarersInfo

6. Advance Decisions — making wishes legally clear

An Advance Decision to Refuse Treatment (ADRT) — sometimes called a living will — is a legally binding document in England and Wales that allows your loved one to specify, while they have mental capacity, which medical treatments they wish to refuse in the future if they can no longer communicate their wishes.

It is governed by the Mental Capacity Act 2005. To be legally valid it must be written, signed, and witnessed. If it refuses life-sustaining treatment, it must also explicitly state that this refusal applies even if life is at risk.

Common treatments that are included in advance decisions:

• Cardiopulmonary resuscitation (CPR) — a DNACPR order can be part of this or arranged separately with a doctor
• Artificial ventilation or mechanical breathing support
• Artificial feeding through a tube
• Specific medications or interventions

An advance decision cannot request treatments or request euthanasia — it can only refuse treatments. It can be changed or withdrawn at any time while your loved one still has mental capacity.

Once made, give copies to the GP, any care professionals involved, and relevant family members. Ask for it to be added to the medical notes. In Scotland, an advance directive is not legally binding but must be taken into account by medical staff.

Compassion in Dying — a UK charity — provides free templates and guidance for making an advance decision. Their website is compassionindying.org.uk

→ Download the Advance Directives guide — free at CarersInfo

7. Hospice care — earlier than you think

Hospice care is free. It is provided by the NHS and charitable hospices and there is nothing to pay for the care received.

And yet hospice referrals are consistently made too late. Many families only access hospice care in the final days or hours — missing months of specialist support, symptom management, and family care that hospices are specifically designed to provide.

Hospice care is not just for the very end. Hospices offer:

• Outpatient clinics and day hospice for people living at home
• Specialist palliative care at home through community teams
• Short admission stays for symptom management or to give carers a break
• Inpatient care when needs cannot be met at home
• Emotional, psychological, and spiritual support for the person and their family
• Bereavement support for family members after death

To access hospice care, ask the GP for a referral. You can also contact your local hospice directly — most will speak to families who are considering referral before a formal referral is made.

Find your nearest hospice at hospiceuk.org

→ Download the Hospice Care guide — free at CarersInfo

8. NHS funding in the later stages

Two NHS funding routes are particularly relevant when care needs are high and deteriorating rapidly.

NHS Continuing Healthcare (CHC) Fast Track — if your loved one has a rapidly deteriorating condition and is approaching the end of their life, they may be eligible for fast-track CHC. This bypasses the usual lengthy assessment process and can be approved within days. A healthcare professional who knows your loved one can submit a Fast Track Tool on their behalf. If you believe this applies, ask explicitly — do not wait for it to be suggested.

Fast-track CHC provides full NHS funding of care — in any setting, including at home or in a care home — at no cost to the family, regardless of assets.

NHS-Funded Nursing Care (FNC) — for people in nursing homes who are not eligible for full CHC but have been assessed as needing registered nursing care. The NHS contributes £267.68 per week toward the nursing element of fees in 2026/27. This is paid directly to the care home — the family does not need to manage it.

→ Download the Palliative Care Options guide for more on funding — free at CarersInfo

9. Bereavement support — for before and after

Grief does not begin when someone dies. For many family carers, it begins much earlier — in the slow losses along the way, in the person who is there but changed, in the future that is being rewritten. This is called anticipatory grief and it is completely normal. It does not mean you have given up hope. It means you are human.

Bereavement support is available now, before the death of your loved one — not only afterwards. Hospices offer counselling and support for family members throughout the caring journey. Your GP can refer you to bereavement counselling. Many carer support organisations offer emotional support and listening services.

After the death of your loved one, the grief will be its own thing — different from anticipatory grief, different again from what you may have expected. There is no right way to grieve. There is no timeline. There is no point at which you should be over it.

What helps:

• Cruse Bereavement Support — free support for bereaved people: 0808 808 1677
• Your GP — can refer to bereavement counselling and support your own health during this time
• Your hospice — most offer bereavement support to families for a period after the death
• Carer support groups — connecting with others who understand the particular grief of losing someone you cared for

→ Download the Bereavement Support guide — free at CarersInfo

You have done something extraordinary

Whatever stage you are at — whether you are in the middle of this, approaching the end of it, or sitting with grief on the other side — I want to say something plainly.

What you have done, and are doing, is extraordinary. Not in a way that gets recognised or celebrated. Not in a way that comes with thanks or ceremony. But in the quiet, daily, sometimes invisible way that real love actually works — showing up, again and again, even when it is hard. Especially when it is hard.

The person you cared for was lucky to have you. And you deserve support, now and after, for everything you have carried.

Please don’t carry it alone.

All eight Later Stage guides are available free at CarersInfo — practical, compassionate support for family carers navigating the most difficult part of the caring journey.

→ Access your free guides here

© CarersInfo 2025. This post provides general information and is not a substitute for professional medical or legal advice. NHS-Funded Nursing Care rate of £267.68/week is confirmed for April 2026 to March 2027. If you or someone you know is in crisis, please contact your GP, call 111, or in an emergency call 999.