What does "End of Life Care Package" really mean?

mrsapple

Registered User
Feb 4, 2013
49
Northumberland
Mum has deteriorated dramatically over the last couple of days, is now barely conscious and hasn't eaten or drunk for 48 hours. NH told me today that she is very poorly, that the GP had been to see her and put her on an end of life care package, and that they were waiting for his prescription to arrive. I was too shocked and upset to ask what this actually means. Can anyone tell me what to expect? I couldn't stay at the NH this evening.
 

Izzy

Volunteer Moderator
Aug 31, 2003
60,426
Dundee
Sorry. I pressed submit too soon!

My mum had an end of life package in her last few weeks of life. She lived with us and what happened was in discussion with us.

A 'just in case' box was left with by the district nurses. That meant that if mum needed extra pain killers etc during the night a nurse could come and administer them without a doctor being called. I was also given a direct number to phone so that I didn't have to go through all the procedure of giving the details over and over.

Eventually a syringe driver was fitted and morphing was administered through this. We were lucky enough to have Marie Cure nurses who came and sat with mu overnight in order to let us have some sleep. I didn't know they would do this as I thought they only provided for cancer patients. They were a great help.

The district nurses come twice a day to bathe mum and turn her etc.
 

mrsapple

Registered User
Feb 4, 2013
49
Northumberland
Thanks Izzy for your very prompt reply, and for the factsheet - it is helpful. I've had more than seven years to prepare for this time, and obviously talked about it and read lots of stuff, including posts from many other TP members. but now it's actually here it's so much harder to deal with than I expected. There have been three occasions in the past year when I've been told mum had only days to live, but she rallied each time. This time I can see for myself she is so weak and frail that's not going to happen.
 

halojones

Registered User
May 7, 2014
438
Sorry. I pressed submit too soon!

My mum had an end of life package in her last few weeks of life. She lived with us and what happened was in discussion with us.

A 'just in case' box was left with by the district nurses. That meant that if mum needed extra pain killers etc during the night a nurse could come and administer them without a doctor being called. I was also given a direct number to phone so that I didn't have to go through all the procedure of giving the details over and over.

Eventually a syringe driver was fitted and morphing was administered through this. We were lucky enough to have Marie Cure nurses who came and sat with mu overnight in order to let us have some sleep. I didn't know they would do this as I thought they only provided for cancer patients. They were a great help.

The district nurses come twice a day to bathe mum and turn her etc.
Thankyou for this information Izzy, I have noted it all in case I need this help in the future, I learn so much from this forum....xxx
 

Izzy

Volunteer Moderator
Aug 31, 2003
60,426
Dundee
Just a wee note Halojones! I live in Scotland so what I've written above is my experience of what happened here. I am assuming the approach is the same across the UK but it may not be!

I alos just recalled that the Marie Cure nurse brought a booklet with her for us. It is obviously intended for patients and carers of patients with cancer but I found it extremely useful. The relevant part for me was from Page 77 onwards as it dealt with the last few weeks of life.

https://www.mariecurie.org.uk/globalassets/media/documents/how-we-can-help/being-there-for-someone/preparing-for-the-end-of-life/end-of-life-guide.pdf
 

janemit

Registered User
Sep 7, 2014
30
I am also very confused re my mum. Two weeks ago home rang my sister and said they had to get marie curie nurse in to give mum injection of diamorphine. I visited that afternoon and of course she was very sleepy. Carer said the Dr would visit Monday.
When i visited a few days later she was sleepy but no different from normal wasn't able to speak to anyone. Over Xmas she has been normal sleepy and not eating much or drinking much.
I visited today and a carer came to see me and asked me if she had been shouting in pain, I hadn't been able to wake her. She then said how they had discussed about using a syringe driver to give morphine but she seemed quite comfortable on oromorph.
I was quite shocked after thinking about it, are we as next of kin involved in these decisions? The carer seemed to think i would know. Has mum been put on end of life care too?
I am a nurse myself but not sure about these things, i know mum has been going downhill for months and have to admit every time the phone goes i think the worse.
 

blandford516

Registered User
May 16, 2012
262
My mum was also put on the end of life care plan . The just incase box was at the NH if needed . It was a huge shock but thinking back no surprize really . It was never needed as mum passed away in her sleep . Thinking of you all going through similar x
 

janemit

Registered User
Sep 7, 2014
30
My mum was also put on the end of life care plan . The just incase box was at the NH if needed . It was a huge shock but thinking back no surprize really . It was never needed as mum passed away in her sleep . Thinking of you all going through similar x
What is a just in case box? Went to nursing home today and spoke with duty manager who said mum was put on end of life care plan, which again not surprised but it would have been nice to be informed. Twice i have been to visit and although she opened her eyes didn't speak or showed any acknowledgement of me being there.
So sad but how strange that just after Christmas my sister, brother in law, brother and my two daughters visited at the same time and she slept most of the time but roused herself to recognise some of us but said I'm not sure of your names but want you to know that i love you all.
I wonder if that is the last thing she will say to me???
 

Izzy

Volunteer Moderator
Aug 31, 2003
60,426
Dundee
A 'just in case' box was left with me by the district nurses. That meant that if mum needed extra pain killers etc during the night a nurse could come and administer them without a doctor being called. I was also given a direct number to phone so that I didn't have to go through all the procedure of giving the details over and over.
This is from my post above and is what it was in my experience. It may be different for others.
 

janemit

Registered User
Sep 7, 2014
30
Oh yes there was so much to take in, the duty manager said they could always call the marie curie nurse to give injection if needed. So that's must be like a just in case box.
I never thought my mum would see 2015 so that was a bonus but have been told she isn't likely to carry on for much longer
 

Ab96

Registered User
Apr 2, 2015
12
Hi Mrs Apple,

you've been given brilliant information by everyone here, I work as a care assistant in a nursing home, and I think end of life care packages do make things easier for families.

If nothing else, I can promise you that your mum will be peaceful and comfortable, well looked after, and dignified throughout with an end of life care package.

My deepest sympathy is with you, hope you and your mum are okay xxxx


Sent from my iPhone using Talking Point
 

barny

Registered User
Jan 20, 2006
199
Herts
A just in case box contains drugs that can be used to control symptoms that may occur. It usually contains something for pain relief, restllessness and agitation and for control of excess secretions. Should distressing symptoms happen the appropriate drug can be given quickly. They are there just in case and not always needed. It means the doctor does not have to be called and you don't have to rush to a pharmacy to get the drugs which can sometimes be a problem at weekends, evenings etc.