End Of Life care

[Horsemad]

What does this actually mean? Are certain things done/not done when someone is receiving EOL care?

It means pain relief and making someone comfortable.

No aggressive measures to try and prolong life like CPR, invasive surgery etc.

It means keeping the person hydrated and giving them as much or as little as they want to eat.

Towards the very end it means access to the super strong drugs (these might be referred to as the 4 core drugs) to make someone as comfortable as possible while their body begins to stop.

Not keeping them hydrated. As the body starts to shut down the kidneys stop functioning, pouring IV fluids in just results in third spacing or pulmonary oedema.

EOLC is about not doing anything invasive or pointless as medical staff will not act on the results e.g. blood tests, x rays, BP checks. None essential medication e.g. cholesterol pills, vit D.

Focus on quality of life e.g. if still alert and mobile then a nice manicure, hair cut. Little bites of what ever food they fancy or drink. If bed bound and drifting in and out of conciousness pressure area care, mouth care.

Thanks both, that's very helpful.
Can I ask - how long is someone expected to live for when they're put on EOLC? Is it quite imminent?

People can be on end of life care for quite a while in some scenarios, what you are describing is the very end of end of life care.

Hydration is still appropriate until it isn't (which keeping someone artificially hydrated i the scenario you describe wouldn't be) and even when it's no longer appropriate mouth care (often moistening the lips and mouth) is still given to relieve any discomfort from dehydration.

many families have heard horror stories of the Liverpool Care Pathway and are worried that their family member will just be left in discomfort. That's not the case, (and never was the intention of the LCP) but I don't think WHY e.g decisions to remove hydration ahave been taken are always explained well.

If 'End of Life' drugs have been ordered 'in readiness', is the end pretty imminent?

We have residents on the EOLC pathway. It means that once everyone agrees to no hospital admissions,keeping the resident comfortable,unnecessary meds ie ABs and medication to reduce distress and family agrees . It really is a thoughtful,considered process.

My mum lasted 25 days from when the doctor said that she was in EOLC. He said that it could be anything from a week to perhaps a month.

She was discharged from hospital into a Care Home, and initially she was sometimes awake and lucid enough to have some yoghurt and juice, other times she wasn't and the staff just kept her mouth moist. They kept her very comfortable and in the end she just slipped away peacefully. The staff obviously recognised the signs because they called me so that I was able to be there when she passed.

All the best @Horsemad 💐

Not necessarily the case . We have had residents who have picked up ,well looked after and have lived a good quality of life. Our most recent death should have died in 2018 🤷‍♀️

If the person is at home you may be offered a hospital bed, which makes it much easier to turn and tend the person.

Also access to community nurses who will come day or night to deal with pain relief or other urgent matters.

It’s a complete lottery of the care received and depends as well on the facility.
My only experience is a grim one, watching a lovely man die in hospital and not even having basic provisions.
If U.K. and possible I’d suggest moving from hospital into home/hospice etc.
Once in the hospital machine it’s just sad.

We are now in our 7th week with MIL. Be prepared for a bumpy road - we've had 3 "better come now" calls the latest was Monday morning. Or it could be really quick. FIL was about 48 hours.

MIL had EoL drugs ordered 6 weeks ago so no guarantee.

My DM is in a care home and we have recently had a meeting with a hospice nurse to discuss and EOL plan. DM did not have capacity to understand what was being said about drugs or treatment but she was clear she didn't want to go back to hospital (two visits in three weeks - 48 hours in A&E each time) . The report from the nurse recommended "only such drugs and treatment as are required for comfort and dignity".

Mum is spending more time asleep now and is on a pureed diet but she still gets up and goes downstairs in the mornings. There's no sign on the end being imminent/before Christmas but there is a plan in place and should she become weaker/sick she will receive EOL care.

My partner was put on EOL care at 4pm on a Friday 4th Nov 2022, he died at 11am the following morning. I was so lucky to be able to be with him in hospital during his final hours, just the two of us, and it was all very peaceful. He was only 52 and died very quickly after contracting sepsis - 10 days from being admitted to hospital for liver disease.

Thanks all, and @CarrieMoonbeams for the flowers. I suspect we're heading into EOLC rapidly. 🫤

Mum has eaten virtually nothing for about a week now & is drinking less fluid each day.
She's in a care home, very frail & has PD.
GP is due to visit tomorrow.

I'm 3.5 hrs drive away, so will be heading over tomorrow for the weekend.

@blobby10 , thank you for replying - just coming up to the first anniversary for you. ♥️

That must have been a huge shock.
Take Care.

My wonderful dad lasted 12 days after a massive stroke - I was able to spend 10 of those days and nights with him in a side ward in hospital. The staff looked after me as well as him after I’d had to fly home from UsA after just landing and being told he was desperately ill.

My lovely mum was in a fantastic care home which was where she passed away.
Again, I was able to stay at her side once we knew her passing was imminent.
The staff, again were kind, caring and understanding of what we were going through.

There was just 4 months between losing them both.

Sending you love and strength as you navigate this journey. X 💗

My Mum died yesterday.

It was very sudden but peaceful which is a comfort, as none of us were able to get there in time.

Even though this was anticipated, it still feels totally surreal.

Sending my love.
Remember to be kind to yourself.
Grief isn’t always easy to navigate x

It means not actively trying to prolong life, and trying to ensure that the person is comfortable, with painkillers if needed.
I sat a lot with an aunt who was on end of life care - she was sleeping much of the time but firmly refusing food and drink when they were offered. Her mouth was kept moist with those little sponges on sticks.

People sometimes get very upset and think the person should have IV fluids if they’re refusing to drink, but as a doctor once put it, ‘They’re not dying because they’re not eating and drinking. They’re not eating and drinking because they’re dying.’
Once the organs are starting to shut down, they can no longer cope with food or liquids.

@Horsemad My sympathies

Sending you my love @Horsemad 💐x

Thank you

@Borntobeamum
@Thmssngvwlsrnd@MereDintofPandiculation

We've had visits from neighbours through the day. People are so kind, bringing food, biscuits and cakes. Some very lovely cards already too.

My DM, in hospital for 4 months and told as there was nothing else that could be done, was discharged to a care home on EOL care. This was Xmas 2021. I got her home in Feb 2022 and she's still with us!!! DF is her main carer with 4 x carer visits a day.

When she came home in Feb 22, they still believed she was EOL so a local hospice doc visited with a huge prescription of EOL drugs that have now gone out of date!!

The emotional roller coaster of the last 2 years had been horrific but I'm grateful to have had this 'extra' time with her.