Active discussions

Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Withholding pain medication from a terminal patient

59 replies

PossiblyDreaming · 29/01/2022 22:12

My aunt has stomach cancer which has spread to her lymph nodes. Despite radiotherapy and chemotherapy over the last 10 months she’s now decided she doesn’t want any more and is trying to cope at home for as long as possible.

I’ve visited her today and she couldn’t move and was moaning/ whimpering almost constantly from the pain. She had been prescribed Oramorph and paracetamol but the Oramorph was all gone and she kept vomiting up the paracetamol. When she’s not in pain she is still very mobile - still swimming in the sea most days, doing her own shopping etc. It’s just the pain that is stopping her. I asked her why she hadn’t asked for more Oramorph and she claimed that the doctor was concerned about her becoming addicted. She has folders of notes on her dining room table in case she needs help urgently she can show them and, sure enough there was a note there from Friday stating that additional paracetamol had been prescribed, Oramorph had been requested but declined due to increasing dependence. Arranged a meeting with a pain management clinic for later next week.

Aibu to think that is completely unacceptable? She is dying. She knows she is dying. She has refused treatment in an attempt to make her last few months as enjoyable as possible and instead she is curled up in the foetal position sobbing because she is in so much pain.

She’s fiercely independent and won’t let me intervene but does anyone know if there is someone else she could speak to who could prescribe her something? Would turning up at A and E be a complete waste of time? She’d be happy for me to drive her places and put her in touch with people but she won’t let me speak to her doctor directly or attend an appointment with her. She’s a very private woman, she always has been but I’m the person that is probably closest to her and I don’t know what to do. I went to the pharmacy and they gave me some dispersable Solpadeine Max which was the strongest thing they could give me over the counter and which they thought she might be able to keep down. I’ve been messaging her and she said that helped a bit but she always says that and unless I’m physically there I don’t know what I can do.

Any advice?

OP posts:
LowlyTheWorm · 29/01/2022 22:14

She needs to be asked to be referred to the palliative care team.

AuntyMabelandPippin · 29/01/2022 22:14

I'd contact your local hospice.

Cocolapew · 29/01/2022 22:17

You could also try the out of hours Dr, either tell them to come to see her or ask if they will leave a prescription out.
I hope she is able to get some soon Flowers

Stormyseasallround · 29/01/2022 22:17

Another vote for the hospice. They’re not just for final days of dying; they’re experts in managing severe pain. Theyll know exactly what to do.

NoSquirrels · 29/01/2022 22:17

Seconding the above posters. You need a palliative care team, and the hospice can put you in touch. The GP isn’t the right route for this.

MacMillan nurses can be really helpful too.

thesurreyyouth · 29/01/2022 22:17

I’ve no real helpful advice but wondered if macmillan have been in touch since treatment finished? Perhaps you could contact them about your concerns?

Elsiebear90 · 29/01/2022 22:17

Do you know if it’s just that one prescription that was declined or if they are refusing to issue her any more at all?

I’m not an expert on prescriptions or end of life care, but I’m assuming there’s a limit to how much the GP can prescribe in certain period of time. If she’s getting through more than what is safe then I can understand why they have refused to give her anymore for now, as if she overdosed and it was found that the GP issued her more than what is safe they would probably be liable.

I would advise she calls the GP to have a discussion about it while you are present to listen in.

Prinnny · 29/01/2022 22:17

So wrong, get straight on to the GP Monday for a palliative care referral for meds, they’ll sort it, you’ll get no joy in A&E it’s not their domain.

Original poster
PossiblyDreaming · 29/01/2022 22:18

Thank you. I know she sees the hospice as the end of the road and is determined to hold them at bay as long as possible. If they can actually give her medication I might be able to convince her though. Thank you.

OP posts:
Original poster
PossiblyDreaming · 29/01/2022 22:19

@Elsiebear90 as far as I saw on her notes it looks just like that one request was declined. She said she had been being prescribed a bottle a week but she used the last one up more quickly as she was in pain and that’s why she wouldn’t give another. It makes sense if a GP isn’t allowed to prescribe above a certain amount, thank you.

OP posts:
NoSquirrels · 29/01/2022 22:21

@PossiblyDreaming

Thank you. I know she sees the hospice as the end of the road and is determined to hold them at bay as long as possible. If they can actually give her medication I might be able to convince her though. Thank you.
Oh this is sad to read!

My mum found the hospice team absolutely THE most helpful. She was with them over 4 years before she died in different ways.

They aim to stabilise and manage pain, it’s not about last resort come-to-die at all.
Also they may well be able to offer her practical wisdom in managing and letting you help her more.

Please just ask her to have a chat. You can talk to them yourself and they’ll help as well. They are holistic for the whole family in that sense.

QuizzicalEyebrows · 29/01/2022 22:21

Slow release oxycodone would suit her which she can take twice a day if she's downing all the Oramorph.

She needs a decent pain med care plan to suit her needs.

She'll have to speak to her consultant and palliative care team.

Thehop · 29/01/2022 22:21

The hospice will help her whilst she’s at home, she doesn’t need to live there.

FurbleSocks · 29/01/2022 22:22

I'm not a GP but if someone is dying and in pain surely the lesser of the two evils is addiction over pain?

Hairyfriend · 29/01/2022 22:27

Does she still drive? Maybe there is a concern about oramorph and driving/operating machinery etc? If she is classed as palliative, I didn't think there was an upper limit to pain meds as required, but maybe there is a limit to what a GP can prescribe?

Sounds like she needs an antiemetic like ondansetron to stop the vomiting along with oramorph. Is she prescribed an anti sickness medication? Paracetamol comes in a suppository form which works quickly and suitable for someone vomiting or unable to tolerate things orally. Its over the counter in a pharmacy. I'd speak to MacMillan or the hospice for advice. Flowers

Elsiebear90 · 29/01/2022 22:28

@FurbleSocks

I'm not a GP but if someone is dying and in pain surely the lesser of the two evils is addiction over pain?
I think it is more likely they are concerned about the risk of accidental overdose because she is obviously consuming a lot more than what she has been advised to if she’s got through a week’s worth in a few days. I’m a HCP, but I don’t deal in this area, so this is an educated guess.
AnnaMagnani · 29/01/2022 22:28

She needs to be in touch with her local community palliative care team - just to be confusing, they may be called Macmillan or not, may operate out of the hospice or not, but that is the specific service she needs.

GPs are not limited on the amount they can prescribe but their skills in palliative care prescribing vary from amazing to non-existent, which is why the specialists in the palliative care team exist.

Your aunt probably has a limit on how quickly she can request a repeat prescription just like we all do for all meds. That isn't wrong in itself but it does sound that 1. she's on the wrong dose 2. she needs a slow release painkiller 3. she might need a bigger bottle 4. I could go on and on as this is what I do for a living...

Basically her pain meds plan is wrong and she needs a specialist to sort it out.

Candleabra · 29/01/2022 22:29

Hospice are great for palliative care. They provide all sorts of services, not just at end of life. They helped my dad a lot.
And i know macmillan can get a bad rap (and I think the services vary hugely depending on area), but he also found them very helpful, particularly with pain medication. The prescribers in the community (GPs and pharmacists) were just too conservative and consistently massively underprescribed at the end stage.
Speak to the hospice. Please reassure your aunt that it’s not a last resort. They will understand and can make a huge difference to quality of life.

Tiredmum100 · 29/01/2022 22:31

She needs to see her palliative care specialist team. I work as a community nurse and all our palliative clients are reviewed these teams. As another poster said she could have oral tablets for pain. I would ask for a referral on Monday. Does she have medication for the sickness?

TyrannosaurusRegina · 29/01/2022 22:32

Please let her know that the hospice isn't for people at the end of the road, they do also help manage pain in people who aren't yet at that stage. I'd try every avenue, out of hours, consultant mcmillan nurse etc.

SueGray · 29/01/2022 22:34

I’m a palliative care specialist nurse and this is definitely not right. Your aunt’s analgesia should not be rationed and I’m sure her pain management could be improved. I would say that she needs a review and the hospice are there to do exactly that. We see people for months or years before they die. I know there’s often fear about the hospice but try to persuade your aunt to accept the help she clearly needs.

Candleabra · 29/01/2022 22:35

And yes, oramorph is usually for breakthrough pain. The slow release morphine (zomorph I think it’s called) is taken at 12 hourly intervals and builds up in your system so you’re pain free. Paracetamol was used in tandem as well (8 in 24hrs).

That’s what my dad had anyway. It took a few days to get him on an even keel but really was very effective. He very rarely needed the oramorph after that.

Prinnny · 29/01/2022 22:35

The GP should titrate the amount of oramorph she needs into a long acting opioid like oxycodone, and also give oramorph for breakthrough pain. Both of which are very common in palliative medicine.

It sounds like unfortunately your aunt has come across an inexperienced doctor but please her get that rectified!

Ketchupgoesinthefridge · 29/01/2022 22:37

Another vote for the palliative care team. Not only is the oramorph perhaps not strong enough she may not also be absorbing it and it maybe necessary that she has medication via a different route. They will be able to discuss this with her as well as creating a plan for her going forward. They will give her back some control over all of this and help her continue to be as independent as possible.

MoreHairyThanScary · 29/01/2022 22:38

There are many options for pain relief, long acting tablets pain patches as others have said the hospice team are often the most knowledgable. Many of my patients work with the hospice team for months or years.

Even if the GP has concerns re dependence they really haven't handled this well paracetamol is never going to cut the mustard and the6 should be looking at a better solution that the short acting morphine.

Swipe left for the next trending thread