End of life, anticipatory medicine........ advice needed.

[Tolkienista]

Just looking for some advice based on experience and knowledge.
My mum's life is coming to an end .....she is currently on amber level end of life care, but we've been told it could move to red in an instant. She's in a care home, well looked after and to the best of my knowledge not in any pain. Her food intake is minimal, but she's eating ice cream and Weetabix at the moment and sleeping a lot.

We've been told that she's not yet at the stage for "anticipatory medicine" but Midazolam was one drug mentioned which could be administered..
Is this intervention to hasten the end of her life, ease her symptoms, or both ?
Can't bear to think of her in a drug induced haze in her final days/hours.
Please advise. We've not really had any explanation of what is involved and after our father died in a hospice using the Liverpool pathway (which has since been withdrawn )we need to know more.

I'm sorry you're having to think about this @Tolkienista

Anticipatory medication is just a fancy way of saying 'we don't know what difficulties might arise when your loved one is dying, and we don't want to be running around trying to find something that helps if they struggle. So we've got a set of medications that we know work in different situations, and we'll have them ready in case we need them.'

Patient A might have pain, but not agitation (unless their pain is not controlled). So they might be given morphine for the pain, but the midazolam would stay in the box.

Patient B might be very agitated but not seem to be in pain. They could get midazolam but not morphine.

Patient C might be agitated and in pain, so they would get both.

Patient D might be just seeming to sleep more and more with fewer windows of awake time, and have no pain or agitation. They wouldn't get anything.

It's a patient by patient, hour by hour response.

The last thing anyone wants is to be calling a doctor at 4 am to try and prescribe some medication and then trying to get hold of it. If it's all there, then best case scenario it's wasted drugs, and worst case scenario, everything that can be done to make the patient more comfortable can be done quickly.

On the 7th day (Friday) of my mum deteriorating the matron of the home called us aside (I am so grateful that they respected her dignity and conducted these conversations away from her bedside) and made sure we were aware that she was heading towards the end. They explained what the end of life meds were - something to ease her breathing if she started rattling, something for agitation and something for nausea. The home had organised the prescription for end of life meds but on this occasion the pharmacy was unable to deliver them so we arranged for a family member to go to the GP and then to a pharmacy that was open late to pick them up and take them to the home.

Each day mum was deteriorating so we went on the Sunday with the thought that this would be the last visit and we would stay until the end. Mum's breathing was louder - as we climbed the stairs to her room we could hear her - but she didn't seem distressed. Over an hour or so she got louder so my cousin went to find the nurse to ask if it was time for the meds. While she was out of the room mum opened her eyes, made a strange noise and stopped breathing. Her heart was beating for a while longer but they didn't need any of the meds.

@Lougle what a fantastic explanation, I fully get the scenarios you've outlined and it all makes total sense.
At the moment she is in a half way house, alive but very sedate, sleeping a lot too. She's been like this for well over three weeks, so we have no idea what happens next, but everyone on here, including yourself has been so helpful.

@IthinkIsawahairbrushbackthere that is a very sad read, but at the same time a very helpful read as you've outlined the reality of end of life symptoms and for me that is something I can deal with.
Thank you for taking the time to post your experience and sincere condolences on your loss.

@Tolkienista I don't know if anyone has told you about 'terminal lucidity' or 'the surge', but it's something you might need to be aware of. You might see a period of a few hours at some point, where your Mum suddenly seems 'better'. She might be more awake, start to have a meaningful discussion with you, or suddenly want to eat more when she hasn't been eating. People often get caught out and think this is a sign that their relative is getting better, but it's normally a sign that death is close. I've had a patient who was pretty much unconscious and hadn't eaten for days, for example, who suddenly sat up and asked for porridge, and wanted to know where her watch was.

I just wanted to mention it so that if that moment comes, you can treasure it as a last memory of your Mum, rather than being crushed when she deteriorates again and dies.

I hope those meds can stay firmly in their box and that she passes very peacefully.

@Lougle no I haven't heard of those terms, but thank you for explaining what we may encounter as her life comes to an end.
It's definitely been a rollercoaster of emotions in the last few months as her health has gone into decline.

My Dad died on Sunday afternoon. Saturday morning he said to me “I love seeing your beautiful smile in the morning”.
That’s the last lucid thing he said.
Love him so much. The love doesn’t die OP, if that helps x

I’m so sorry that you are going through this OP. My wonderful Mum died earlier this week in a hospice and she was given these medications and they were very helpful. You have had such wonderful responses on this thread and if you have further questions or concerns over the coming days, please do come back to us for advice and hopefully some comfort.

I would also recommend reading up a bit on likely behaviours at end of life. It will reassure you that
what you are seeing is totally normal and nothing to be concerned about, despite it being hard to witness. Marie Curie and other websites have some really useful info.

https://www.mariecurie.org.uk/information/symptoms/just-in-case-medication

Thinking of you at this difficult time. Do look after yourself and make sure you take some breaks.

@Biscuitburglar thank you for taking the time to post a reply and so sorry that you lost your mum earlier this week , condolences to you and your family.
I will certainly look at the link you have added as I think I need to prepare myself for the changes and likely behaviours as she nears the end of life.
Very much appreciated.

I'm very sorry about the death of your mum @Biscuitburglar

When my OH reached this stage the nursing home was given an end-of-life pack which contained Midazolam and other things. As soon as he showed the slightest sign of being agitated they would give him some more and he would be peaceful again. It was a huge blessing to him and to those of us with him.

I've told my children I'm having ALL the drugs when the time comes.

I follow Hospice Nurse Julie on Facebook (?) and I think she has a book out as well about dying, she describes it as a natural process of the body shutting down which can seem very alarming from the outside, but luckily we have some modern medicines to make this go a little easier and better.

Hi I haven't read all the responses on here as its just too raw. I lost my Dad six weeks ago. And it's a pain I cannot describe. All I came to say is, Dad fell asleep on a Sunday. He was at time agitated whilst asleep so they gave him anticapatory drugs. On the Wednesday the syringe driver was fitted. He died at 8am the following Sunday. He didn't wake up and I didn't get the chance to say all I wanted to. So please, say all you need to prior to the sedation. My thoughts are with you..

@Humanswarm I'm so sorry for your father's loss and I can imagine how you feel with the very direct question I asked.
I have learnt a lot from the personal experiences that people have relayed on here and it's been incredibly useful for me going forward.
I constantly talk to her and I'm grateful we've got this time together.
Thank you for your post.

How are things going now @Tolkienista?

@TheBroonOneAndTheWhiteOne Amazingly, she is still alive, but hanging on to life by her fingertips. Never thought we'd be heading into mid April and still have her with us.
She's still eating.....a little.
Still drinking......a little.
Sleeping a lot, absolutely no movement at all, fully bed bound, very little communication.... the odd word, but I fully think she understands everything we say to her.

Thank you for your post.

Sending you love. It’s incredibly tough. I lost my darling dad in December and was with him at the end. It was incredibly distressing. Obviously. But I will say that the doctors/nurses didn’t hesitate in administering extra medication when he became agitated so I hang on to the hope that he didn’t feel pain or distress for very long at all. I still struggle to get my head round the long night of watching him pass. I don’t think you can prepare yourself at all. Or prepare for what you’ll say or do. In the end I was holding his hand and i think he knew we were all there. Like someone else said, tell her everything you want to say. I hope she remains comfortable. And I hope you also have someone looking after you xxx

What a lovely post , written from the heart and just as important written from experience.
The longer I'm with her in these final weeks, the harder it's going to be to let her go, but inevitably it will happen and the greatest gift I've given her in these final days is my time and presence.
It's been humbling and I don't regret a moment I've spent with her.

My FIL was end of life very recently in a hospice, terminal cancer. He was given the drug you have mentioned when they knew he didn't have long left and others to put him in to a deep sleep to make him calm and more comfortable. Just before then he had started getting distressed and clawing at his clothes and face, trying to take the sides of the bed down. They adjust r the drugs as needed to keep him asleep at that point, not to make him die quicker, but so he wasn't agitated. He passed a couple of days later. I'm so ve rt sorry about your mum.