ESLD end of life signs

[DreamRn]

Hi all

My mum was recently admitted with alcoholic hepatitis. She is extremely unwell has Aki 3 renal insufficiency which improved but this had worsened again rapidly. She had refractory ascities draining 9litres every 3-4days but when they do this is completely throws her kidney function off.. her consultant was very honest and has said I could go either way but very quick if it does..

I know where this is going to go in my heart of hearts but does anyone know in the uk when they decide palliative care is needed or what the signs are of true end of life with liver disease? Everything I read just explains ESLD not what happens right at the end

I know this sounds morbid but I just want to know

Thank you for all your responses

[AyrshireK]

You might find the BLT publication on Thinking Ahead, Planning for the Future useful as it goes into palliative care options etc. It sounds like at the moment things are very touch and go for mum, sadly multiple organ failure is usually the end for most folks when it reaches that far gone and it can be very grisly sadly. britishlivertrust.org.uk/in...

As doctors have intimated they are saying either way but with the kidneys beginning to go as well you might need to prepare for the worst. We do have members who have been with their loved ones as they died and many have previously shared their stories.

You take care in all this because it is going to be very difficult especially in light of the covid situation too.

Best wishes,

Katie

[DreamRn in reply to AyrshireK]

Thank you for this it is a very good leaflet.. I’ll have a look and see if I can read some other people’s experiences. It is horrific with covid she is terrified and there is obviously no visiting until end of life is declared. Simply awful x

[AlexJ91]

Hello,

I think that due to the unpredictability of Liver Disease considerations for palliative care are often missed. That being said, it doesn’t mean that it shouldn’t be a consideration. The Nurse Led helpline may be able to give you some more information about what kind of options should be available for your mum.

My mum was in the same position in May, we had consented to a DNR and were told she was not eligible for intubation/intensive care and that the odds were against her. Fortunately she survived so there is always hope, but I too was always realistic with the possibility that this could be the end and tried to prepare for that too. The uncertainty is very difficult to manage. Make sure you are looking after yourself too. X

[AJD1310]

Hi, I’m so sorry to hear the situation your mum is in. I lost my dad in April to liver failure, he had cirrhosis, autoimmune issues a d other health complications. It was very sudden. He had a few weeks where he developed ascities and was struggling for breath, he was admitted to hospital where they said it was too dangerous to put in a drain so was given diuretics and steroids for his chesty cough and sent home. He was great for a few days but soon became constipated, wouldn’t eat, slept all the time and confused. No doctors would come see him because of COVID. His condition got worse and worse until my mum finally had to get an ambulance as even gmeds failed to pick up how seriously ill he was. He was admitted to hospital and had a massive GI bleed which we think was caused by the steroids. We weren’t allowed to visit and then for the horrendous call to say he was dying. It was very quick, his liver stopped working all together, he was very jaundiced and slept through most of it, basically his organs all started to give up and he died around 3 days after we got the call to come in. My dads situation was horrific but I hope you also read the stories about people who go into hospital in the same state as my dad but rally and make it through in the end. I really hope your mum comes through this. It is such a horrible thing to deal with and my thoughts are with you!! X