Choosing where to die: home, hospice, hospital or a care home

The starting point is a conversation, and it is often the hardest part. Talking about dying with a parent covers how to begin it and what to ask. Once you know what they want, these are the ways to make sure other people know it too. Only a lasting power of attorney has a registration fee, and your parent does not need to do all of them.

1. 1

   Ask them, and listen to the reasons

   While they can say

   Ask where they would like to be looked after if they became more unwell, and where they would like to be at the very end. The reasons matter as much as the answer. "At home, with the dog" and "anywhere my pain is controlled" lead to different plans.
2. 2

   Write it into an advance statement

   Any time

   The NHS describes an advance statement as a written record of somebody's wishes, preferences and values, and gives "where you would like to be cared for" as an example of what goes in it. It is not legally binding, but anyone making decisions about their care must take it into account. It can be attached to their medical notes.
3. 3

   Ask the GP or nurse about an advance care plan and a ReSPECT form

   At the next appointment

   Many areas use a ReSPECT plan, which records recommendations for emergency care agreed between your parent and their doctors. The Resuscitation Council says it stays with the person, so ambulance crews and out-of-hours doctors can see it. It is not legally binding and can be reviewed if things change.
4. 4

   Think about a lasting power of attorney for health and welfare

   Needs time to register

   An attorney appointed this way can make decisions about medical care and moving into a care home, but only once your parent cannot make those decisions themselves. It has to be made while they still have the capacity to make it.
5. 5

   Tell everybody, and keep copies where they can be found

   Once it is written

   NICE recommends that a copy of the advance care plan is kept where the person lives, and goes with them if they are admitted to a hospital, care home or hospice. Tell the GP, the district nurses, the family and any carer where it is kept.

An advance statement is different from an advance decision to refuse treatment, which is legally binding when it is valid and applies to the situation. Advance decisions and advance statements explains what each one can and cannot do, and lasting power of attorney covers how to set one up.

Marie Curie suggests starting from what matters most to the person: being with the people important to them, familiar surroundings, privacy, help with personal care, or being free from pain. Those priorities are a good way into the conversation. The question to ask is which place gives your parent most of what matters to them, and what it would take to get it there.

The choice is wider than home or a care home, though that may be the comparison you have already started making. Care at home or a care home sets out the wider differences, and hospice care explained covers what a hospice does and how to be referred. This page is part of the guide to end-of-life care at home, and the end of life care section covers the rest of this stage.

A family able to be there makes a great difference, and the national framework for continuing healthcare is careful about it. It says the NHS can take into account what family members are willing to do, and that no pressure should be put on them to do it. You can say what you are able to manage and what you are not. If you are caring for your parent yourself, you are entitled to ask the council for a carer's assessment of your own needs, and NICE reminds professionals to offer one.

For the nights, night care at the end of life sets out the difference between a carer who sleeps in the house and one who stays awake, and live-in care at the end of life covers what one carer living in can do between the nurses' visits. Who is in the team goes through everybody else who may be coming to the house.

A move that was not the first choice can still be the right one for your parent at that point, and it is not a sign that the plan failed. A hospice admission can bring symptoms under control and let the family sit with their parent rather than nurse them. A fast transfer home from hospital can give somebody their last days in their own bed. What to expect in the final days and hours covers the changes near the end, wherever your parent is, and the first days after a death at home covers who to ring and what happens next.

Three routes can pay for that care. The NHS continuing healthcare fast track, completed by a doctor or registered nurse, pays for the whole care package and is not means-tested; fast-track continuing healthcare goes through how to ask. The council can pay towards care after a needs assessment, depending on savings and income, with an upper limit of £23,250 in England. Attendance Allowance has special rules for people nearing the end of life, with no face-to-face assessment and the higher rate paid, and Attendance Allowance explained covers the claim. The cost of end-of-life care at home puts the figures together.

When you are ready to find help for the nights or for care around the clock, you can search for carers near you and compare their rates, including overnight and live-in carers, and message the ones you would like to speak to. PrimeCarers is an introductory service, not an agency or a care provider, and carers on the site are self-employed. You choose the carer, meet them, and agree the hours with them directly. There is no way to search for carers by palliative or end of life experience. What a carer says about their experience is their own account on their profile, and it is for you to talk through with them. Before a carer appears, 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. We do not check qualifications, training or references. Separately, carers are insured while they work.