What to expect in the last months and weeks of life, and how to prepare

Most of these changes are the illness and the body slowing down, not something anybody has done wrong. End-of-life care at home is the guide to start from for how the care fits together and who does what. Marie Curie says it can be reassuring to know that most symptoms can be managed with good palliative care, so a new symptom is a reason to ring the nurse, not a reason to wait and see. Two of the rows have their own guides: eating and drinking near the end of life covers appetite and swallowing, and managing pain and symptoms at home covers pain, breathlessness and the medicines the nurse may leave in the house.

The last days have changes of their own, such as breathing that sounds different and skin that changes colour, and they are easier to read about separately. The last days and hours describes that stage.

Marie Curie puts it plainly: it is hard to tell when somebody is approaching the end of their life and when they might die, because everyone is different and there is not one pattern or timeframe that people follow. It adds that doctors and nurses cannot know for certain what will happen to one person. The NHS says end of life care should begin when somebody needs it, and may last a few days, months, or sometimes more than a year.

The line between the months and the weeks is not sharp either. An NHS community trust in Kent describes the last year as turbulent, with good days and bad days, and a good week does not mean the illness has turned. The pace can change, and the guidance GPs use treats events such as a serious fall or repeated trips to hospital as signs that needs are increasing. If you want the clearest picture for your relative, ask the GP or the palliative care nurse what they are seeing, and ask again when things change.

Being told that somebody may be in their last year of life can open doors as well as being hard to hear. GP practices that use the Gold Standards Framework keep a register of patients identified this way so their care can be planned ahead, and the special rules for benefits and the fast track route into NHS continuing healthcare both depend on a clinician recording that the person is nearing the end of their life. If nobody has had that conversation with you and you think it is time, you can ask the GP directly.

It helps to ask the district nurse at the first visit what is likely to be needed later, not only what is needed now. A hospital bed ordered early can stand in the room before it is needed, and a change of room is easier while your relative can still help decide where the bed should go and what they want to see from it.

1. 1

   Talk about what matters to them

   In the months, while they have the energy

   Where they would like to be cared for, and where they would like to die. Who they want with them. What worries them most. These answers shape everything else, and writing them down as an advance statement means the team can follow them later.
2. 2

   Make a lasting power of attorney

   GOV.UK says registering takes 8 to 10 weeks

   There are two kinds: health and welfare, and property and financial affairs. Your relative must have the mental capacity to make one, and it cannot be used until the Office of the Public Guardian has registered it.
3. 3

   Check there is an up to date will

   Formally signed and witnessed

   GOV.UK says a will must be signed and witnessed to be valid, and that advice is worth getting if it is not straightforward.
4. 4

   Record any treatment they would refuse, and agree a ReSPECT form

   With the GP or the palliative care team

   An advance decision to refuse treatment is legally binding if it meets the rules. A ReSPECT form records recommendations for care in an emergency, is not legally binding, and stays with the person so paramedics can see it. Not every area uses ReSPECT, so ask what your area uses.
5. 5

   Ask for the SR1 form and look at funding

   Once a clinician agrees it applies

   An SR1 form from the doctor or nurse lets a claim for Attendance Allowance or another disability benefit go through under the special rules. Ask at the same appointment whether a fast track application for continuing healthcare should be made.

These conversations are hard to start, and there is no right moment. Talking about dying with a parent has ways to begin them and what to do if your parent does not want to. Advance decisions and advance statements explains the difference between the two documents and how to make each one, and lasting power of attorney goes through the forms. If your relative can no longer make decisions and there is no power of attorney, GOV.UK explains how to apply to become their deputy through the Court of Protection, which takes longer.

If your relative has said where they would like to die, tell the GP and the district nurse so it is written into the plan. Choosing where to die goes through home, hospice, hospital and care home, and what each place can offer.

You do not have to move up the table in order, and you can add two or three nights a week before you add seven. A carer does personal care, mouth care, helps with changing position as the nurse advises, keeps your relative company and rings the nurse when something changes. The nursing stays with the NHS: the district nurse gives injections and just in case medicines, sets up a syringe driver if one is needed, and the GP or palliative team decides about symptoms. What a carer does at this stage goes through a day in detail, and night care at the end of life covers the nights.

When you are ready to look, you can search for carers near you and compare their rates. PrimeCarers is an introductory service, not an agency or a care provider. You choose the carer, speak to them first and agree the hours directly with them. There is no way to search for end of life experience: what a carer says about it is their own account on their profile, so ask about it on the call. Before a carer appears on the site, their identity and right to work are checked, they have an enhanced DBS check (or PVG in Scotland, Access NI in Northern Ireland) issued within the last 18 months, and they are interviewed online. Separately, they are insured while they work.

Plans can change suddenly at this stage, so it is worth knowing the terms before you start. Under the client contract a visit you cancel is payable in full, except for unplanned hospitalisation, illness, or another reason the carer agrees to. Ending the arrangement takes 48 hours' notice for hourly care, and seven days for live-in care once 168 hours have been worked, with 48 hours before that. PrimeCarers charges nothing itself to cancel and does not set the terms between you and the carer. The cost of end-of-life care at home sets out what the NHS pays for and what families pay, and looking after yourself at the end is for the person doing most of the caring.