Palliative and End of Life Care
Being there, doing the ordinary things well, so that somebody can be at home for the last part of their life.
What we do, and what the nursing team does
This page needs to be clearer than most, because families reading it are usually reading it on a very bad day and they need to know exactly who does what.
The clinical side of end of life care is led by the district nursing team, the GP, and where they are involved the hospice or specialist palliative care team. Symptom control, pain relief, syringe drivers, anticipatory medicines and clinical decisions are theirs. We do not do those things and we would not claim to. Providence is registered with the CQC to provide personal care, not nursing.
What we provide is everything around that, which is most of the hours. Help with washing and being made comfortable. Mouth care, repositioning, keeping somebody clean and dry and dignified. Sitting with them. Making sure a family member can go and sleep for four hours knowing that somebody who is awake is in the room. Meals for the household. Answering the door. The washing.
Families almost always underestimate how much of this there is and how quickly it exhausts them. The most common thing we hear afterwards is that nobody had told them they were allowed to have help with the ordinary parts.
Most people say they want to die at home, and far fewer manage it. The reason is very rarely medical. It is that the practical load became impossible at three in the morning and the only available answer was an ambulance. Care that covers the practical load is what makes home actually possible.
We work alongside the district nursing, GP and hospice teams rather than in place of them. Anything clinical stays with them, and we will help you get hold of them when you need to.
This is likely right if
- Someone wants to be at home for the last part of their life
- The family is managing but is exhausted, particularly overnight
- Personal care has become the difficult part rather than the medical care
- A hospital discharge home for end of life care is being arranged
- Somebody needs company and presence rather than being alone
Something else may fit better if
- Symptom control is not currently managed, where the district nurse or GP is the urgent call
- A hospice bed is the right setting, which we will help you pursue
What we actually do in these weeks
Mostly ordinary things, done gently and without fuss. That is what this work is.
Personal care
Washing, freshening up, changing bedding, keeping somebody clean, dry and comfortable. Done slowly and with the person told what is happening even when they cannot answer.
Comfort and positioning
Repositioning to protect skin, mouth care, keeping lips and mouth moist, pillows arranged so somebody is actually comfortable rather than just lying down.
Being present
Sitting with somebody so they are not alone, particularly overnight. This is one of the most valuable things we do and it looks like doing nothing.
Letting the family sleep
Night cover so that a husband or daughter can sleep properly. People cannot keep vigil for three weeks, and trying to is how families arrive at the end already broken.
Keeping the house going
Meals, washing, shopping, the bins, the door. Nobody has capacity for this and it does not stop happening.
Escalating quickly
Noticing when something has changed and getting the district nurse or GP on the phone. Knowing who to ring and ringing them is part of the job.
What is included, and what is not
Set out plainly so there is nothing to discover later. Anything not listed here can still be discussed, and often arranged.
Included as standard
- Personal care, comfort and positioning support
- Overnight presence so the family can rest
- Practical household support during the period
- Carers briefed on the person wishes and any advance care plan
- Working directly alongside district nursing, GP and hospice teams
- Support for the family, not only the person
- Contact after a death, because our carers knew them too
Arranged separately
- Any nursing task requiring a registered nurse, including syringe drivers and injections
- Prescribing, symptom control and clinical decisions
- Verification of death, which is a clinical responsibility
- Funeral arrangements, though we will help you find who to speak to
From first call to first visit
This is the one service where speed genuinely matters, and we treat it that way.
Ring us
Including out of hours. Say what the situation is. You do not need to have anything organised or know what to ask for.
We assess fast
Often the same day. We speak to the district nursing team as well so that everybody is working from the same picture rather than three different ones.
Care starts
Usually within a day or two, and faster where it has to be. We would rather start small immediately than perfect a plan while a family goes another night without sleep.
We keep adjusting
Things change quickly at this stage. The package moves with them without you having to request a review each time.
How this is paid for
End of life care is one of the areas where NHS funding is most likely to be available. NHS Continuing Healthcare has a fast track process specifically for people who are rapidly deteriorating and approaching the end of life, and it can be arranged in days rather than the usual assessment timescale. A district nurse, GP, hospital team or hospice can start it.
Ask about fast track NHS Continuing Healthcare early. Many families never hear of it and pay privately for care they were entitled to have funded. If nobody has mentioned it to you, mention it to them.
Read the full guide to fundingWhat families ask us about this
Do you provide nursing care?
No. We are registered to provide personal care, not nursing. Syringe drivers, injections, pain relief and clinical decisions are the district nursing team, the GP and the hospice. We do the personal care, the comfort and the presence, and we work alongside them.
Can you provide someone overnight?
Yes, and it is often the single most valuable thing we can offer. Families cannot keep watch night after night. Somebody awake in the house lets everybody else sleep.
How quickly can you start?
Usually within a day or two, and faster where the situation demands it. Ring us and say it is end of life care. It goes to the front of the queue.
What is fast track NHS funding?
A shortened route through NHS Continuing Healthcare for people who are deteriorating quickly and approaching the end of life. It can be arranged in days. A district nurse, GP, hospital team or hospice can start the process, and it is worth asking directly because it is not always offered.
Will the carers know what they are doing?
Carers doing end of life work are matched deliberately and briefed on the person wishes and any advance care plan before they start. This is not work we hand to somebody at random on a Friday afternoon.
What happens after the person dies?
We stay in touch with the family. Our carers will have been in that house every day for weeks and they knew the person too. Ending it with a closed file would be wrong.
Services that often go together
Homecare and Personal Care
Support in your own home, from half an hour a day to round the clock, built around the way you already live.
Read moreCarer Support and Respite
Planned breaks, from a few hours to a few weeks, for the person who has been doing this without stopping.
Read moreLive In Care
A trained carer moves into the home and is there day and night, so that moving out of it never has to be the answer.
Read moreIf you are in this now, ring us
You do not need to know what to ask for. Tell us what is happening and we will tell you what is possible, including things nobody has mentioned to you yet.
Emergency placements are answered 24 hours a day, seven days a week.