Dying in pain - is this just the reality for some people? *Possible trigger warning*

[justwantacuppa]

Dad is at end of life stage now, we’ve got him at home. He hasn’t had more than a few syringes of water for about 3 days, hasn’t eaten anything in 2 weeks and has been bed-bound for a month or so. He can’t talk properly and hasn’t been able to for almost a week now.

He has a syringe driver for morphine and midazolam and the nurses have been coming to give him extra injections of morphine on top of that. But he is still just constantly whimpering, groaning and crying in pain. When I say constantly I mean he hasn’t slept for more than 10 minutes in a row since 9 o’clock this morning, he has just lay there unresponsive to anything we say but groaning and crying out in pain every 5 seconds and flailing his arms around in the air continuously. It is absolutely horrifying and traumatising and I just want him to be at peace. Does anyone know what more we can do? Everybody says that once somebody has the syringe driver they’ll mainly sleep until the end. This just hasn’t been the case. He’s having the max pain relief but is still awake and in what seems to be an immense amount of pain. I don’t mean to frighten anybody but is this just the reality for some people? Is this how it will end and there’s nothing more we can do? I feel so helpless and would give anything for him to be more restful and at peace.

OP I'm so sorry you are going through this. I feel traumatised by watching someone die like this. We struggled desperately to get hospice nurses, district nurses or GP out to provide any pain relief at all. Managed to get morphine about 36 hours before she died. Completely inadequate and I feel a sensation of mounting panic thinking back to it all. I'd been asking and asking for days and days. They made me feel like I was trying to drug her unnecessarily. I don't understand why hospice care failed us. I have had a debrief since and they openly admitted they failed (straight after she died and since)

Don't hold back from asking for medication. Please. You know your relative best

To add to what @Midlander88 said, I know that some people prefer to pass away when they're on their own (after being told it's ok).
It's such a tough road to travel.
I feel very sorry for you @justwantacuppa.

Thank you so much for being so kind everybody. For the information and the kind words. We are trying so hard, my mum and me. We have told him so many times that it is time to go now, time for him to be free, we will always love him and so on. I keep holding his hand like everybody says, and just telling him how amazing he has been to me. He has been everything to me my whole life - he has always worshipped the ground I walk on. This is the least I can do for him.

All healthcare professionals who see him keep saying they don’t know how he’s still going really. I just wish he could be at peace.

Sending love to everybody who has been or is in the same position as me. Knowing that people have gone through this and survived is a comfort.

@Beautifulroses Thank you for being so kind and informative. I didn’t know if I was just being unrealistic with my expectations and that I needed to face facts that he will be in discomfort. Hearing that this isn’t the case has given me a whole deal of strength to demand more. He’s been having an additional 2.5mg I think it is of midazolam every time the nurses come to give him more morphine. The rapid response team are under our local palliative care service. I worry that some of the nurses don’t think he’s really at the end yet which really panics me because the thought of him having to endure more of this is so painful. I think that because I asked about him starting on the injections for his secretions as I can hear the mucus in his throat and she said they’d leave that for as long as possible because it really does dry everything up and can be uncomfortable. But how long is ‘as long as possible’?

Like others have said, I'm sorry that you are going through this. Caring for someone you love at the end of their life is hard enough without seeing them distressed and in pain.
Please get in touch with the out of hours team and ask for an urgent visit to assess and manage your Dad's pain. While everyone is different and needs different amounts of pain relief, 30mg may be enough for one person but this is clearly not enough for your Dad. In general terms, 30mg over 24 hours is not a large dose and there is a lot of scope to have this increased. They should provide a stat (one off immediate) dose of morphine (around 5mg of morphine given as a small injection) AND increase the amount in the syringe pump given that he has had several stat doses already. The effect should be assessed and repeated regularly in relation to his pain. They may also increase the midazolam to manage any distress. This way of increasing in relation to pain/distress means that you are giving what is needed, no more, no less. He should be pain free and settled and that will be the right dose (irregardless of the 'numbers').
You sound like you are doing so well at this difficult time. Please tell yourself this, and I so hope that the care team can improve the current situation.
With lots of love

@justwantacuppa, in my view, that means as long as it doesn't cause distress. It is possible for someone to moisten his lips and mouth with what looks like a foam lollipop that can be dipped in water. There are also gels which can be used to ease the feeling of a dry mouth.
You may well need to rest tonight, but maybe tomorrow you could ask some questions about the way forward.
Unless you're the only person around, get some rest now.
I'm sending strength and hugs to you. I know how much I needed them when my DDad was dying, and I'm guessing you feel the same way too.

You could ask the rapid response team for Haloperidol. It's another drug that can be prescribed for EoLC and it's specifically for agitated delirium. He may fit the criteria and it's worth an ask.

Not an expert but it sounds like a lot more meds are needed

Re the secretions in the throat, we got conflicting info about this with some doctors sayimg it would make the raspy breathing sounds more upsetting for us.

I think the person in pain is the top priority so would go for more meds. I think they fear being sued or something.

As them about mouth care. A dry mouth spray might make him more comfortable, it is horrible having dry mouth from lack of eating and drinking and my understanding with my grandad was that this stage is such a delicate one, these small comfort things really matter.

I am so sorry for what you are going through.

And just to add, you don't need to say thank you - to anyone of us that have been helpful.
You are in an awful situation. This is what the nest of vipers is good at.
My very best wishes to you. (Un-mumsnetty hug.)

It sounds like you are having such a hard time. As others have said make sure you look after yourself and lean on others for support.

I would be tempted to call the rapid response team back again to inform them dad still isn’t settled. Explain that the extra doses of medication are not settling him and he continues to groan/ lifts his arms up etc. use the term “agitated”. Is he grimacing/ frowning/ wincing? They can be signs of pain.
Does he have a catheter? Has he passed urine? Some people hold on to their urine “urine retention” and this can cause horrible agitation, a catheter will sort this.
If you can remember or have access to the records work out how much medication he has had in extra doses and inform them of this asking what their next steps will be - do they have out of PMH ours access to a palliative care doctor/ consult, if so you would like them to seek advice from them.

If they use the right medications at the right dose it won’t hasten his death but allow for his body to rest peacefully as he dies.

Some drugs such as morphine and midazolam have an effect on the respiratory system and can depress the breathing so too much could hasten death however, medication such as levomepromazine to manage agitation won’t have an effect on the respiratory system.

As for the secretions there is an element of truth in what they are saying, the medication they would use to manage this will dry everything out however this is the point of it. You can keep dads mouth moist with small sponges of water (or whatever flavour/ tipple he likes) if he’s able to such, or just a wet flannel if that’s all you have in the house in his lips. In my experience secretions are difficult to get on top of if left for too long so we tend to treat them early where I work.
Having said all that it’s important to know that the only reason he has secretions is because he is now so deeply unconscious that he is unable to be aware of his secretions and clear them, meaning that he is unaware of them. A little like snoring - it’s far worse for the other person in the room to hear than for the person having a blissful sleep while snoring.

I would really advocate calling the team again and asking them to escalate the situation to someone else.

You are being such an amazing advocate and support for your dad.

Dad passed away yesterday afternoon with us holding his hands. He was finally peaceful on his last day. Thank you to everybody who encouraged me to ask for more morphine. The nurses came last night after I stopped posting and gave him more medication and returned several times in the night to top him up, then in the morning his syringe driver was replenished and upped in dosage too. He fell into a deep peaceful sleep in the early hours of yesterday morning and that continued until he went in the afternoon.

OP I am so so sorry for your lots but glad they managed to make your lovely dad peaceful and free from pain in his final hours.

Well done for advocating so well for him, such a hard time to have to fight.

Peace and love to you and your family

I'm so glad you managed to get the extra help you needed for your lovely Dad.
I'm so sorry for your loss op

I am so sorry for your loss, I'm glad he was able to pass away peacefully.

Sorry for your loss, pleased you were able to give your father the best care & attention to make his death more peaceful

Sorry for your loss. You obviously were a caring and devoted daughter

I'm glad you got good help and send you lots of strength for the emotional rollercoaster. Remember to take care of yourself too.

I am pleased you got the help you needed. And his passing was peaceful. We are going through the same and I understand the feeling of helplessness when they are clearly in distress.
Take care of yourself and know that you made a difference in his last days. Xxx

I'm so sorry for your loss op. I'm glad he was peaceful at the end

Sorry for your loss. You have been a wonderful wonderful daughter

OP I am so sorry for your loss. My mum died the same way - we ended up with a lot of extra morphine and it was peaceful in the end. For that I am thankful

I had the pain pump implanted 5nov 24. Sadly it landed in the holidays season of my provider. Three weeks of the pump being filled with saline turned into 3 months. My pain pump nurse is nothing less than fantastic and she truly cares for me. The pain pump implantation was sadly my 18th general surgery in 13 years. Currently I am 43 and have been fighting this since I was 30 was on my way to medical school when all the work I had done Was discounted it broke me in every single way possible. I had been to the diamond hospital in Chicago 2 MVD Sc's ant wake forest, 2 gamma knife surgeries which ex post facto caused me to have all of my teeth pulled . I had my pain pump implant inserted Nov 5 2024. Because of how the holidays landed I was supposed to have the sailing drained from my implant annd replaced with fentanyl the Tuesday before thanksgiving. Sadly the dr was in vacay. JANUARY 7 2025 was my first fill. Here we anre 5 months post of. The h'hockey puck'implant still feels like it's searing from the implant out thru the skin. I have some background in veterinary and human medicine and 6 months out of surgery this is not what I expected and now I am hearing on the outside going to have to wait an entire year to get to my fails maintenance does. I thought fighting all o f the battles to get to the implant was the surgery was the finish like however I feel like I still have a steeple race in front of me. I am miserable. I missed Easter with my family and time I had spent preparing for the rest of my life was taken away. All of a sudden I was such things could be over . I don't want to continue on this road . It's not fair to me and it is in no way close to fair to the people who live in my heart. 13 years and 18 general anesthesia surgeries it too much for any human. I'm truly not sure how much more I can hang in for and I'm not sure what I'm fighting for. If I can't be who I am I need to fade away---/I just hope people smile when they think of me and they're way more happy I was here than sad I'm gone. I've made my peace. Maybe as the pain pump titrates up and I feel something fantastical but just be happy I was here and not sad I'm gone