Hospice care explained: what hospices do, whether it is free, and how to get a referral

The NHS describes hospice care as a style of care, rather than something that takes place in a specific building, and says its aim is to improve the lives of people who have an incurable illness. Hospice UK puts it as helping people live as fully and as well as they can to the end of their lives, however long that may be. The team usually includes doctors and nurses who specialise in palliative care, healthcare assistants, physiotherapists and occupational therapists, social workers, counsellors, chaplains and trained volunteers.

So a person can be looked after by a hospice for months without ever staying a night there. They might see a hospice nurse at home, go to a day session once a week, and come in for a few days if their pain gets hard to control. Their family might have someone from the hospice to talk to, and bereavement support afterwards. Your local hospice is one of the services this guide to end-of-life care at home brings together, alongside the GP and the district nurses. If the words themselves are confusing, palliative care, end of life care and hospice at home sets out what each one means.

Hospice UK lists the conditions hospices look after as including dementia, heart, liver and kidney failure, lung conditions such as COPD, neurological conditions such as motor neurone disease, frailty and cancer. Marie Curie says hospices care for anyone with a terminal illness or a life-limiting condition. If your relative has heart failure, COPD or kidney failure, end of life with heart failure, COPD or kidney failure covers how those illnesses change towards the end, and for dementia, end-stage dementia care at home does the same.

Hospice care is also for the family. The NHS says it covers the emotional, social, practical, psychological and spiritual needs of the person and of their family and carers, and that this continues into bereavement. You do not need to be struggling badly before you ask for help for yourself, and looking after yourself at the end covers what else is there for you.

Hospices in England are mostly charities. They receive some money from the NHS, and Hospice UK says the NHS funds around 40% of the care a hospice provides on average in England. The rest comes from fundraising, gifts in wills and charity shops. That is why the hospice down the road has a shop on the high street and runs a sponsored walk, and why what each hospice can offer differs from area to area. Some hospices are run by national charities such as Marie Curie, and their care is free in the same way.

What a hospice does not pay for is somebody in the house for the rest of the day and night. The hospice team visits and advises; unless your area's hospice at home service provides longer periods of care, the hours between visits fall to the family, to a council care package, or to a carer the family books. Two routes can pay for that care. If you are having hospice care at home, the NHS says the person should be assessed for NHS continuing healthcare, which is free and not means-tested, and where health is declining quickly the fast track pathway can put a funded package in place quickly. The council can also help after a needs assessment, subject to a means test, which local authority funding explains.

1. 1

   Talk to the GP or the district nurse

   First

   The NHS says the first step is to speak to the GP. Say what has changed, such as pain that is not controlled, breathlessness, sleeping most of the day or a hospital saying there is no more treatment, and ask whether a referral to the local hospice would help. A district nurse can refer too.
2. 2

   If your relative is in hospital, ask the ward

   Before discharge

   Hospice UK says a hospital doctor can refer, and many hospitals have their own specialist palliative care team. Ask for the hospice referral before the discharge date is set, so the hospice knows about your relative when they get home.
3. 3

   You can ring the hospice yourself

   If you prefer

   Some hospices take self-referrals. The NHS says you can contact a hospice directly, but the team will usually also ask for a referral from a doctor or nurse. Whether yours will start from your call varies, so ask when you ring.
4. 4

   The hospice contacts you

   Afterwards

   What happens next varies between hospices, and the team will want to understand what your relative needs. The NHS says places are limited, so ask how long the wait is, and who to ring if things change while you are waiting.
5. 5

   Ask about funding and plans at the same time

   Worth doing

   Ask the same doctor or nurse about the continuing healthcare fast track and the SR1 form, and whether there is a ReSPECT form or an advance care plan in place. The hospice team can help with planning ahead too.

It helps to have a few things ready when you ring: your relative's NHS number if you have it, the name of their GP surgery, a list of their medicines, and what they want, if they have said. If they are able to, your relative should be asked whether they want the referral, and it is their decision. Where they have written down their wishes, advance decisions and advance statements explains what those documents do, and choosing where to die covers the conversation about home, hospice or hospital.

The hospice that covers your relative is decided by where they live rather than by which one is closest to you. If you live some distance away, search using your relative's postcode.

Hospice UK says some hospice teams can offer specialist nursing care at home 24 hours a day, and help arrange equipment or a bed. Other teams visit to give care and advice, and then move on to the next house. Ask your team what they will cover, and then work out which hours are left, looking at the early mornings, the evenings and the nights in turn. What a carer does in someone's last weeks goes through what somebody in the house can do across the day, and who is in the team lists everybody else who may be visiting.

If you want someone in the house alongside the hospice team, you can search for carers near you and compare their rates. PrimeCarers is an introductory service, not an agency or a care provider, and it does not provide hospice care, nursing or bereavement support. You choose the carer, speak to them first and agree the hours with them directly. There is no way to search for 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 check when you talk to 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. Separately, visits booked through PrimeCarers are insured while the carer works, by the carer's own policy or by cover we arrange where they do not hold one, subject to the policy terms.

A carer sleeping in the house is from £130 a night, a carer awake all night from £150, and a live-in carer from £1,050 a week, all with our fee included. Night care at end of life and live-in care at the end of life set those two arrangements out.