Palliative care, end of life care and hospice at home: what each one means

The NHS puts the link between the first two plainly: end of life care is a form of palliative care somebody receives when they are close to the end of life. So everyone having end of life care is having palliative care, and many people having palliative care are not near the end of their life at all. Somebody living with heart failure or motor neurone disease may have it for years, alongside treatment for the illness itself.

Hospice at home sits differently. It describes who is giving the care and where, rather than a point an illness has reached, and what the local team can do varies by area. If the illness is dementia, palliative care for dementia covers how these words are used when there is no single moment at which treatment stops.

Two names cause particular confusion. Macmillan nurses are specialist nurses working in cancer care, and Macmillan says they do not usually give hands-on physical nursing the way a district nurse does; their work is advice on symptoms and support. Marie Curie nurses and healthcare assistants give hands-on care in people's homes, often overnight, and Marie Curie calls this hospice care at home. Both are free to the family. Who is in the team goes through everyone who may be involved, and can you get live-in nurses? answers the question families ask about nursing in the house around the clock.

1. 1

   Ring the GP surgery and say what has changed

   First

   The NHS says your first step is to speak to the GP, because part of their job is to explain which services exist locally. Say what has changed rather than asking for a service by name: pain that is not controlled, breathlessness, no appetite, or a hospital saying there is no further treatment.
2. 2

   Ask for a referral to the community palliative care team

   Free

   The GP can arrange community nurses, and can refer on to specialist palliative care nurses who visit at home to advise on pain and symptom control and support the family. Ask for this by name if symptoms are the problem. A district nurse can also make the referral.
3. 3

   Ask what hospice at home covers where you live

   Free

   Ask the GP or district nurse what the local hospice provides in the house, and how long the wait is. You can contact a hospice yourself, though the team will usually still want a referral from a doctor or nurse. What is available varies between areas, so ask rather than assume there is nothing.
4. 4

   Ask about the fast track pathway if health is declining quickly

   About 48 hours

   If somebody is deteriorating rapidly and may be nearing the end of their life, the NHS says they should be considered for the continuing healthcare fast track pathway, so a care package can be put in place as soon as possible, usually within 48 hours. A doctor or registered nurse responsible for their care completes the form. You cannot complete it yourself, but you can ask them to.
5. 5

   Write down what they want while they can still say it

   Any time

   An advance statement records preferences and wishes, and anyone making decisions must take it into account. An advance decision to refuse treatment is legally binding where it is valid and applies, and one refusing life-sustaining treatment must be written, signed and witnessed. Many areas also use a ReSPECT form, which records recommendations for emergency care.

If you are the one doing most of the caring, Carer's Allowance is £86.45 a week for at least 35 hours of caring, where the person you care for gets a qualifying benefit and you earn no more than £204 a week after tax, National Insurance and expenses. Carer's Allowance explained has the conditions, NHS Continuing Healthcare explains the assessment, the fast track pathway covers the quicker route used at this stage, and local authority funding explains the means test and how to ask for an assessment.

A carer at this stage does the washing and dressing, keeps the mouth comfortable, helps with meals for as long as they are wanted, sees that medication is taken on time, turns somebody every few hours, and sits with them at three in the morning. They are not a nurse, and they are the person who is there, so they notice the change that prompts the phone call. When you are ready to look, you can search for carers near you and compare their rates by postcode, see their experience and reviews, and message the ones you would like to speak to.

PrimeCarers is an introductory service rather than an agency or a care provider, and it holds no CQC registration. Carers on the site are self-employed, set their own rates, and agree the visits with you directly. Before a carer appears, their identity and their right to work are checked, an enhanced DBS on the Update Service is checked, and they have had an online interview. Qualifications, training and references are not checked by us: references sit on a carer's profile, and skills and training are for you to go through with the carer when you talk to them. Carers hold insurance that covers them while they work.

Two parts of the contract between a client and a carer matter more at this stage than at any other. A visit cancelled by the client is payable in full, apart from unplanned hospitalisation, illness, or another reason the carer agrees to, which is worth knowing when somebody may be admitted at short notice. The period for ending the arrangement is 48 hours for hourly visits, and seven days for live-in care once 168 hours have been worked, with 48 hours before that. Bank holidays are charged at one and a half times the carer's rate and Christmas Day at twice. Travel time and travel costs are chargeable only where the two of you have agreed them in advance in writing. PrimeCarers charges nothing itself to cancel, and does not set the terms between a client and a carer.

Which arrangement fits usually depends on the nights. Overnight care covers a carer sleeping in the house or awake through the night, live-in care covers a carer there day and night, private palliative carers covers what to look for in somebody's experience, and current rates lists what each type of visit costs.