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of what is involved and after our father died in a hospice using the Liverpool pathway (which has since been withdrawn )we need to know more.

@Tolkienista I'm sorry your mum is so poorly. Can you ask the home for advice?

Midazolam is primarily used for end of life agitation and anxiety, it sedates but is generally not long lasting unless used in a syringe driver. It's often combined with haloperidol which is also for agitation but also for nausea. Morphine often used as well.

I'm not a medical professional but my mother has recently been through end of life care in a care home supported by hospice at home care.

Midazolam does not hasten end of life although this is apparently a common misconception.

I hope all is calm and peaceful for you and your mum.

(edited for clarity)

Yes, I think that conversation is probably needed. As I've said she is being very well looked after, we have a great open relationship with the care home. She's seen a doctor and district nurses regularly over the past few weeks and thankfully pain is not an issue.

Midazolam and haloperidol are commonly used in end of life care. (Adult social care professional here). Used as above PP says, not to hasten end of life at all. I would much rather have them than not have them. End of life can be very distressing for various reasons.
Speak to the home though, and ask them. That is what they are there for. Sending a big unmumsnetty hug too. Xx

I watched my Dad die, the midazolam and morphine in the syringe driver calmed him and made him more settled. Having had midazolam sedation myself it seems a nice way to go.

I’m so sorry you are going through this.

Thank you @tonsattingforbjudes for your informed and very helpful post, that is very useful going forward.
At the moment I would say everything is calm and peaceful, she is comfortable and pain free too which in the grand scheme of things is a blessing.

That is very useful to hear your experience. Thank you for taking the time to post and I'm sorry for your loss.

Thank you so much for your really helpful post, that is extremely useful to me as a non medical person. I have a very good relationship with the care home, but I haven't asked any questions at all about end of life care, just accepted what they've said.
I will ask questions on my next visit.

Midazolam is a very calming sedative which helps if patients are distressed in any way. It promotes restfulness and sleep.
It is administered in a syringe driver along with morphine and cyclizine (for pain and for sickness respectively).

The care home staff will be well-versed in knowing when to start these medications.

I've cared for many, many patients who have these drugs at the end of their lives and I think they're a very good thing. Small doses are given at first and are gradually increased.

Patients who are no longer eating and drinking generally go into kidney failure (and die of it) so the medications in a syringe driver ensure a peaceful and pain-free death.

I’m a doctor, OP, and have worked in palliative care. As @tonsattingforbjudes said, Midazolam is used to relieve the agitation which is very common at the end of life. At appropriate doses it will not hasten death, and in fact it has lots of uses in other settings (it’s used, for example, as sedation during minor procedures including in children, as its effects wear off quickly).
Morphine is useful for pain and also for breathlessness, which can be a problem towards the end.
I wouldn’t be afraid of either of these drugs, OP - if and when they’re needed, it will be obvious to everyone. It sounds like your mum is being really well looked after, which is great. I hope all goes very peacefully

Thank you for taking the time to reply, that is very helpful and informative as we move forward to the final stage.
At the moment she is eating and drinking, but not very much......all we want for her is "a peaceful and pain free death" as you mentioned in your post.

@AppropriateAdult thank you for your thoughtful, insightful post that is really helpful advice and extremely reassuring going forward.
We have been blessed in having a care home that is open and communicative with us and the only reason I'm posting this tonight is because my brother was a bit sceptical about this "anticipatory medicine" but every response including yours helps to understand it more.
She is extremely peaceful when I go in to see her and just seems to be gradually slipping away.
Thanks again for your post.

Anticipatory medications should be prescribed for people approaching the end of their life. They are there 'just in case'. If your mum was to experience any pain at all, or become unsettled, the medications are there to help relieve these symptoms. They may never need to be used, but should be there in the care home just in case. It would be a worse situation if your mum was uncomfortable and no medications were available for her.

I have cared for many patients at the end of their life and it sounds like your mum is being looked after wonderfully in the care home. It sounds like she is very peaceful.

Same here. Had them in a driver for 2 days. Mostly slept then died peacefully

Thank you for your really helpful post (from a position of experience) especially a full explanation of "anticipatory medicines" you explained it so well.
She really is peaceful and so well looked after too.
We are very lucky to have such caring staff.

It sounds like they’re talking about ‘just in case’ medications, these are pre prescribed medications used in end of life care. They are usually for symptoms of pain, agitation and nausea, they won’t hasten anything but will help with symptoms if needed.

So sorry to hear your mom is in this position.

My dad passed at home at the start of the year - he has severe dementia and was in and out of hospital, and we got to the point where we decided to withdraw all medical care apart from palliative - a very difficult decision but the right one for dad. He stopped eating and drinking but remained alive for about 10 days, and was given Midazolam (sp?), which I understand is a form of valium, and morphine shots during this period, which were necessary for his comfort and peace.

On the last day, the shots no longer seemed to be helping and he was very agitated, so I phoned and begged the district nurses to return and give him another shot. The lovely nurse who came gave him a much higher dose, which I believe finally allowed him to slip away.

I don't in any way want to distress or upset you, but from personal experience I would recommend doing as much research as your can into end of life care (as you are doing, posting on here). I wasn't in any way prepared for what it would be like, and as one of dad's primary carers have been left quite traumatised by the process - I ended up off work for about a month, and needing to be prescribed ADs. While it was alwaya going to be tough, I think if I was better prepared I would have coped slightly better, if that makes sense?

Feel free to ask anything you like - hope what I have written here makes sense.

Midazolam is useful for agitation. It’s not for speeding up the end or anything like that.

My mum spent 11 days unconscious and the drugs although prescribed and “in the cupboard “ at the care home, were not administered. Her death was long and lingering and they said because she showed no signs of pain they would not give them to her. I don’t know if they would have hastened her end. She was expected to live 2-3 days - it was awful watching her and if the drugs would have speeded it up I wish they had been given.

That is quite a strong word to use "traumatised" and that scares me, because I've been right in the thick of it in the last month since she became bed bound. I've been with her every other day, feeding her, talking to her, just easing her through and we haven't reached the end yet.
I can't think of a question to ask you, but thanks for your honesty and clarity in explaining what to expect as we near the end of her life. I know it's going to be really hard as she's been a very much loved mother but we have to let her go.

Sending a big hug and hand hold - nurse here. Others have explained the anticipatory meds - I agree that they should help your mum feel relaxed and calm if she has them towards the end. It's a sign of good care that these have been considered.

Thinking of you xxx

Gosh that is a tough read @PoppySaidYesIKnow , "11 days unconscious" .
I really hope that isn't the case for my mother, but thank you for explaining what happened in your mother's end of life care.

@LovesToMunchPlants what a lovely post.
Thank you for your support and understanding.
So glad I posted on this, as the replies have been extremely helpful and written by people who've been there or like yourself are a medical professional.

I was where you are last October. Sending you huge hugs. My dad had all the drugs you listed in fairly large doses. They were an absolute blessing, my dad's mind was razor sharp to the end but the midazorlapan and morphine meant he went peacefully. For that I'm very grateful xx

If you can bring yourself to watch it, this is a lovely explanation of what happens at the end of life. It is narrated by Kathryn Mannix, a palliative medicine consultant. It explains the process so gently.