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Original poster

To expect end-of-life pain medication?

45 replies

Mayflower282 · 25/09/2024 08:34

My dad has been on end of life care for a few weeks now (at home). He has a syringe driver with some meds, but I don’t think it’s doing much. He is thrashing around, crying, grunting, and seems to be in pain. I’ve been calling the district nurses all night but just goes to answer machine. Tried calling the Pallitive team this morning and again an answer machine. Is this normal??? Is end of life supposed to be this barbaric and inhumane??? Or am I just expecting too much?

OP posts:
CraftyOP · 25/09/2024 08:40

I'm so sorry, it's not meant to be like that. He's supposed to be comfortable.

Twoshoesnewshoes · 25/09/2024 08:41

I’m so sorry. There should be someone there to respond . I hope you get some support soon.

ThatAgileGoldMoose · 25/09/2024 08:44

I'm so sorry that you're having to deal with this, and at such an already distressing time.

What about calling 111 or even 999 frankly. I know you're supposed to be getting the support from the other phone lines but if they have failed you, you still have a human in incredible suffering - in that case if it were me I wouldn't hesitate to ring 999. Paramedics would be able to administer pain meds.

Roryno · 25/09/2024 08:45

I’m so sorry, This must be awful for you all. Palliative care should be your best option. They were great when they got to my dad, and my best friend. But they weren’t called early enough in my dad’s case.

Unescorted · 25/09/2024 08:51

I am sorry you, your dad and family are going through this.

Some of the thrashing could be down to the drugs he is being given... My dad was eventually given something to counteract his.

Unfortunately the level of care he is recieving is similar to what we witnessed... Once we got into office hours the response was better.

It is hard to see someone you love dearly go through so much distress. Take care & treat yourself kindly.

TeddyPig · 25/09/2024 08:52

I am sorry you're going through this, my brother died last week in palative care, although there was some discomfort, the nurses kept on top of and adjusted the driver for so he was kept as pain free as possible (in a hospice). He is supposed to be comfortable and it must be incredibly hard for you. As other posters have mentioned calling 111, or emergancy services if you do not hear back could be an option.

Fillyfrog · 25/09/2024 08:55

There's no way district nurses should be going to an answer machine all night and I'm so sorry this has happened to you. Were you given the right number for the service as most trusts have a evening/nights service for district nursing that is different to the daytime service and therefore a different number. I would definitely be ringing 111 or even 999 to escalate this, it's absolutely terrible.

Pigeonqueen · 25/09/2024 08:58

I had this exact situation with my Mum. She was actually in a nursing home - terminal bowel cancer. If someone else was in this much pain they’d ring 999 so I don’t actually think that’s a bad call to make if you can’t get hold of anyone else.

Ratfinkstinkypink · 25/09/2024 09:01

I had the same when DH needed an increase in meds. phones for the DNs and the hospice both going through to answerphone and when they did eventually get back to me the teams were the other end of the county. I would be on the phone to the GP now to try to get someone out ASAP.

DottieMoon · 25/09/2024 09:03

I’m so sorry you are going through this. I had the same with my mum when she had cancer. It was so cruel the way she was left to die in so much pain. It was a nightmare trying to get anyone to do anything about the pain.

baileys6904 · 25/09/2024 09:04

Call 999

ThePure · 25/09/2024 09:07

I am very glad that my mum chose to die in a hospice rather than at home. In the days she was at home awaiting the hospice place it was an unbearable responsibility for the family that we felt completely alone with. She had a syringe driver, rescue morphine injections (but no training for us to give them) and visits from DNs, GP and Macmillan but it did not feel enough when she was in pain and breathless in the middle of the night.

OP is there any prospect at all he could transfer to a hospice? It was an incredible feeling of relief for us all when mum arrived there and straight away we felt she was in safe hands and she passed peacefully there within 48h.

CakeIsNotAvailable · 25/09/2024 09:07

Where are you, roughly? If you're near me I can PM you to advise about how best to navigate the local system (I'm a GP).

If you can't get hold of the DNs or palliative team, it may be worth trying your dad's usual NHS GP - if the doses of medication need increasing on the prescription, they can do that and liaise with the DNs.

Flowers4me · 25/09/2024 09:08

You are not expecting too much, your dad has a right to better care and to be comfortable. We were in a similar situation with my mum earlier this year; it was so hard getting prompt attention from the district nurses etc. We ended up literally begging and persisiting for a hospice place and eventually got one. As others have said, try the GP and if no luck there, try the emergency services but be prepared to persist. Thinking of you all. x

Purpleraiin · 25/09/2024 09:08

No he shouldn't be suffering like that. There are plenty of end of life pain meds available to help with this. If you have no joy with the nurse I'd go direct to his GP, book an emergency appointment if you have to. Alot of end of life meds can be expensive so Pharmacies don't always keep them on the shelf, so try and see someone before lunchtime to avoid missing the order cut offs for this afternoon deliveries

StMarieforme · 25/09/2024 09:09

Please call 999 and insist. I'm so sorry. Comfort is paramount and he should have additional pain relief ie oromorph.

LetsTalk12 · 25/09/2024 09:11

So sorry to hear that.
I sadly lost my mum to cancer, she was in palliative care in the hospital also had the syringe driver connected. However it was a fight to get her on a strong pain medication to keep her comfortable. I had to keep getting palliative care in, I complained and complained and complained endlessly as they were keep giving her PARACETAMOL in tablets when she couldn't swallow anymore (severely dehydrated) Keep calling them, your poor dad should not be in such state. wishing you strength x

Fundums · 25/09/2024 09:11

I'm so so sorry you and your family are going through this, it's absolutely brutal. It's outrageous you're getting a bloody answering machine. When my dad was clearly near to death in a nursing home, but the nursing home insisted he wasn't and so didn't have any end of life meds for him, I called our local Sue Ryder hospice who arranged a GP to come straight out. GP confirmed dad was in last hours of his life and arranged the end of life meds that night. Dad was already on Sue Ryder's 'books' (sorry I can't think of a better term) as I had them out previously to assess him for hospice care, and they had given me their 24 hour call line number, so might not be helpful for you, but if a hospice service has had any involvement you could try calling them for help/advice. Though I think they arranged the GP via 111 so would also try 111 as others have suggested.

hiredandsqueak · 25/09/2024 09:11

Neighbour called 999 when in the same situation. Ambulance attended and obviously managed to get the people who needed to attend there very quickly but they stayed until they arrived. I'm so sorry you are going through this.

Shimmyshimmycocobop · 25/09/2024 09:12

I'd call 111 they have access to out of hours services and can put it through as an emergency. I went through something similar with my mum, in my experience the district nurses were woeful, we were offered support with Marie Curie nurses at night they were amazing, is that something available in your area?

NQOCDarling · 25/09/2024 09:14

Is the syringe driver empty? If not you could give the overide button a push.
But this is awful for you both. Call 999 if you havent heard from anyone soon

Spacecowboys · 25/09/2024 09:17

No you aren’t expecting too much and it is inadequate care. Can you call your gp practice? Ours have an option to choose for if someone is on end of life care at home-you don’t wait in the ‘queue’. Do you have a charity in your local area who provide overnight palliative care nurses? They are a great support for family as well, if available. As your dad’s preferred place of death is at home, your local services should be offering enough support to make that happen.

nickyschof · 25/09/2024 09:19

@Mayflower282, ring 111 and explain that your DDad is on palliative care. They'll have a clinician ring you within the hour.

Dymaxion · 25/09/2024 09:28

Hope you have managed to get through to someone, what time are the District nurses due to come and replenish the syringe driver ? They should be able to increase the doses in it, to help settle your Dad, if his pain or agitation levels are not controlled. Terminal agitation can make people restless, shout out and generally be unsettled, even if they aren't in pain and it is distressing to watch someone you love go through this Flowers
It is odd that the District nurses number is going through to an answer machine, worth checking that you have definitely got the right number for the overnight service, for tonight.

Nogoodusername · 25/09/2024 09:36

This was also my experience with my Aunty’s end of life care. She needed much more regular top up doses of pain relief/ sedation alongside the medication in the driver than it was possible to get with the NHS falling apart as it is. Overnight was particularly awful - we weren’t allowed to have the district nurse’s out of hours number, and had to go through the hospice, and I called 25 times once night and the hospice didn’t answer and the voicemail isn’t monitored. In the last couple of days, the district nurse (during day time hours), increased the medication in the driver to maximum and it was much better, but those few days before were hell. Sending you much love