To expect end-of-life pain medication?

[Mayflower282]

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?

No this shouldn't be happening, I'm surprised you weren't given the out of hours phone number for district nurses. If I were you I'd call an ambulance, they can at least change his syringe driver medication so he's more comfortable 💐

I'm at DN at the minute and we have a separate number for OOH - all the contact numbers are displayed on the front of the notes we keep in patient's homes for families to ring if needed overnight.
Do you know what trust the nurses are from? Generally sometimes the contact numbers can be found via Google.
He shouldn't be expected to go without pain relief overnight if needed at home - absolutely not, we'd be horrified if this happened at my team. Hope you've got hold of someone and he's comfortable now

I think there is a limit to what they can safely prescribe in domiciliary situation. Perhaps, it is time to think about a hospice placement. Agree though that you should have a way to contact his palliative or nursing team easily.

So sorry for your pain.

I agree that 999 is appropriate. You dad deserves much better and they will help.

Dad had end of life palliative care too, but was in hospital. The syringe driver is supposed to keep them comfortable and pain-free, if he is still in obvious discomfort then ask about options for increasing the level of the drug. In dad's case, the consultant wrote up the prescription for the driver, started him at a lower level of drug and then said that if things deteriorated, the nurses could increase to a certain level - this was over a weekend when staffing in the hospital was lower.

They also gave him a sedative as he was quite shouty before the drugs level was optimised.

I'm so sorry you're going through this, it's a very difficult time.

There should be 24 hour support available in your area ask the district nurses to tell you exactly what that looks like. For us it was hospice at home 8-8pm, district nursing 8-6pm, evening district nursing 6-2am, then rapid response/111 2am to 8am (just to give you an idea). Call the district nurses for an emergency visit asap (today) for a medication review. Your Dad may need hospice support too to review the whole plan of care - he should be comfortable and his family should feel supported. If in doubt use 111 as back up. I am so sorry you are all going through this. Take care xx

Also - and I apologise if this is not sensible advice, I’m afraid I don’t know how these services work - but I think if I were in your situation, with no help at all, I would maybe call our local hospice for advice?

You should speak to your GP urgently. As soon as he knew my DM was end of life at home ours prescribed a whole carrier bag full of drugs. The pharmacy assistant (who knew us) was crying when she handed it to me. We were given the number of the district nurse team and on the two occasions when we felt DM needed medication they came out very quickly. Palliative care team phoned everyday to ask how she was and how we were. They also sat with her overnight for the last few nights as well. I’m sorry for what you are all going through and hope your dear dad has a peaceful end.

Yes my nan got given a "just in case" box that included morphine etc. they shouldn't be leaving him to suffer

Thank you everyone for taking the time to reply with support and advice, I really appreciate it. Makes me feel less alone going through this 😔 They eventually came, more than 12 hours after I first phoned. I checked my phone, I called 16 times. They said they were short staffed, staff called in sick. At last they have upped his meds and he seems settled 🤞

That's not good enough. To keep a dying man in pain for 12 hours. Please complain. And yes I'm a nurse so understand staff shortages but this should never happen.

You’re right - it shouldn’t happen but sometimes it’s completely unavoidable sadly.

It's totally avoidable, the OP hasn't even been given an out of hours phone number for the district nurses? Disgusting.

When someone is dying that's completely unacceptable. So much for dignity and respect.

Your poor dad 💐

She said she was phoning all night but the call went to answerphone.

Sending love. I’m sorry that you are going through this

Exactly, she should have an OUT OF HOURS number for emergencies, which this was. It's unacceptable, not sure why you're arguing whether it is or not? Everyone deserves to spend their last days of life with dignity and as comfortable as possible.

This makes me so cross! Every time there’s a debate about end of life euthanasia, someone will pipe up “palatine care is pain free” well, not if the drugs are still in their box it bloody isn't!

My relative got very very old, not dying of anything in particular just ran out of steam. Their care home assured us that they were well set up for end of life so we thought staying somewhere they were happy and familiar with was the right thing.
In reality, although end of life drugs were prescribed and on the premises it was virtually impossible to get them administered. They would exhaust themselves with vivid hallucinations and be climbing the walls with pain. Then fall asleep exhausted. Of course this was when the district nurse would turn up, and then wouldn’t give anything as they weren’t distressed…they spent weeks on liquid paracetamol. Calpol basically! It was brutal.
Only got “the good stuff” in her last 24hrs.
You have my sympathy OP, its an awful time.

I think there is a limit to what they can safely prescribe in domiciliary situation.

I don't think there is @Catza , I have looked after people in their home, on absolutely whacking doses of various medications, but these have always been prescribed by a specialist Palliative consultant. What is important is that the doses of medication prescribed, manage each individuals symptoms, regardless of what that dose might be.

I hope you managed to get through to the Palliative care team @Mayflower282 and that the doses in the syringe driver have been adjusted to manage your Dad's symptoms better ?

And don't be afraid to complain, there have been various reports and strategies about end of life care and leaving someone at home, who has EOL symptoms, for 16 hours without being seen, is definitely not how it is supposed to be. It might be that there needs to be better staffing, or contingency plans for when there are unavoidable gaps in staffing, but nobody should be left dealing with what you and your Dad experienced.

At night or any OOHs call 111, explain he is a palliative patient and his symptoms. He'll be the highest priority on the OOH DN list and they'll get out to him.