Withholding pain medication from a terminal patient

[PossiblyDreaming]

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?

I dont understand about addicton shes dying surely it doesnt matter at this point

Thank you so much for all the advice. I’ll try and convince her to speak to the palliative team or hospice. It’s funny, she’s resigned about dying and jokes about it all the time but is absolutely terrified of mention of the hospice. It’s so tricky trying to help when she’s got such sticking points about things.

To a point the GP is right as Oramorph is not the best painkiller if she is needing it for more than occasional breakthrough pain. The usual practice would be to change her paracetamol to co-codamol or tramadol four times a day and, if that was inadequate, use a modified release morphine twice a day (both with Oramorph for occasional use)
If the surgery has a pharmacist on their team they can often deal with issues like this. If not the GP should action it but she needs to get proper advice as Oramorph may not be the best option for her

I’m sorry this has actually broken my heart. Poor lady has terminal cancer and the doctor is worried she’s addicted to morphine. That’s disgusting. She needs the pain killer to help so what if she gets addicted. You need to go higher then the GP either a hospice or palliative care. Having hospice care doesn’t mean the end of the road yet but the nurses and care workers are absolutely fantastic and will get her on the right track.

Ach, this is inhumane. My family were very lucky when Mum died. She was i hospital and we were told she had 36 hours at most.

She was mainly unconscious, but niece, a nurse, thought she was showing signs of discomfort. The doctor came and said he'd prescribe paracetamol, because morphine would depress her breathing.

Sister laughed at doctor, told him you couldn't get more depressed breathing than being dead. The doctor then prescribed morphine. Mum died twelve hours later.

In my view, my sister was spot on. Mum died with sister, brother in law, daughter and me round her bed. She never regained consciousness. I'm glad that was was the way her death went. She was 83, she was tired and had had enough. Her death certificate have the primary cause of death as multiple organ failure.
as I said to my sister at the time, she squeezed every bit of life out of every thing she had.

The fact that as a society we seem to insist that every possible medical intervention be tried, just infuriates me.

I'm 71 now, and I have multiple health issues. I'm not squeamish about death, neither is my daughter. I have visions of daughter wrestling any doctor to the ground who ever tried to use, so called, heroic efforts, to extend my life.

Find out who the local hospice is, check out their website and how to get referred there and show it to her. They are not just places where you go to die these days (if they ever were) they scoop you up and support you however they can and getting their patients back on an even keel is all in a days work to them.

I couldn't have coped without the support of our local one and that was only for 12 days which was the time between diagnosis and death for my lovely dad. They don't just support the patient.

What I would also say based on my very limited experience of them is that the staffing levels were incredible, one doctor to 8 inpatient beds and countless nurses and HCAs. The patients were attended to within seconds, nothing like a hospital where the ward staff are usually run off their feet and it can take quite a while for a doctor to come.

Regarding the meds, that doesn't sound right to me. Had your friend thought about who might advocate for her when she's too ill to do it for herself?

From my experience once we’re through the door and meet people they mellow and accept that hospices aren’t just death and dying. Good luck with convincing your aunt to accept help. Her quality of life could be so much better than it is at the moment.

She can get more help but she will need to ask for it and it sounds like she is in denial to some extent (I.e fending off hospice team who could def help her). You can't help her unless she will let you act on her behalf with the important people. If she won't then you may have to do your best but accept her decision to do this the hard way. Which is really hard for you but is part of her way of coping xxx

@QueenOfHiraeth

To a point the GP is right as Oramorph is not the best painkiller if she is needing it for more than occasional breakthrough pain. The usual practice would be to change her paracetamol to co-codamol or tramadol four times a day and, if that was inadequate, use a modified release morphine twice a day (both with Oramorph for occasional use) If the surgery has a pharmacist on their team they can often deal with issues like this. If not the GP should action it but she needs to get proper advice as Oramorph may not be the best option for her

You can have oramorph constantly if you need it . I had it 2 years ago for stomach pain myself and had it 4 times a day. I know a girl that’s been on permanently for 10 years. Yes there a guidelines but it’s a life saver for many of us so the guidelines should be ignored especially in this lady’s case. Paracetamol certainly isn’t enough for cancer pain that’s an insult.

Is there a local hospice you could contact? They may have a pain outreach service.

Other wise I'd suggest you phone Macmillan (cancer charity ) or Marie Curie and see what they suggest. Both offer advice to family and carers.

You say she's very private and independent, and desperate to stay at home as long as possible, so perhaps she has stubbornly down -played to the GP just how badly she's coping?

I'd seriously consider writing a letter to her GP informing them what's in your OP here. They won't discuss it with you on the phone of course but there's nothing to stop them reading a letter and taking action. They might be discreet and not mention you.

Please speak to the Hospice. My mum has terminal breast/bone cancer and can only function on her pain medication. She has fantastic nurses who look after her and when they can't get hold of my parents they call me. They really are very special and will help.

I'm another vote for hospice - they are for anyone who has been diagnosed with a life limiting illness. A family member had fabulous care with them - both while she was well and still active - and at the end, where her pain was very well managed.

Does your Aunt have a triage number for Oncology? If so I would contact them on the first instance, they can hopefully deal with the pain right now.

I agree with referral to palliative care team but this may need to be done through her Consultant.

If your aunt is frightened of hearing about ‘hospice’ care can you reframe it as pain management? She clearly needs expert help and she needs it straight away. I’m sure that as soon as she meets the team she will understand it’s about living not dying.

She sounds amazing to be carrying on her life but her pain is futile and pointless. Please stick with her and get her to the right place. I fully understand that if she is declining hospice care it’s hard but the GPS could take their advice. None of the medical team would find her pain to be acceptable.

Wishing you all well.

@CharlotteRose90

I’m sorry this has actually broken my heart. Poor lady has terminal cancer and the doctor is worried she’s addicted to morphine. That’s disgusting. She needs the pain killer to help so what if she gets addicted. You need to go higher then the GP either a hospice or palliative care. Having hospice care doesn’t mean the end of the road yet but the nurses and care workers are absolutely fantastic and will get her on the right track.

This is exactly what was done to my father who has terminal prostate cancer. All they care about is addiction. A complete joke. The treatment of terminal cancer patients in this country is utterly sickening. I have been through it with my Dad and two other people. This happened with all three.

I pushed for proper palliative care, some home support, some back-up. Never got it.

Fucking Hell, what sort of special arsehole is concerned about a terminal patient becoming dependent on pain meds?!

Raise Hell OP.

By addiction they might mean becoming less able to benefit from it? But I'd agree that it's not good enough to just say i can't give you more of this without a further plan.

Op I strongly suggest that you contact her GP and the community palliative care team on her behalf. They don't have to, and shouldn't, tell you anything without her permission, but you can inform them of your concerns and that you've seen her in severe pain.

MY terminally ill SIL was under the hospice for a couple of years. I worked there for three years they're brilliant at sorting out problems like this

HRTFT but I get 500ml of oramorph every ten days. That’s a 100ml bottle every two days and although I have a life limiting condition I am not classed as terminal.

Op I'm so sorry to hear about your aunt. My concern is that the pain relief she is prescribed is not meeting her needs. As a terminally ill patient she should have automatically been referred to the community palliative care team - can you phone out of hours GP on her behalf? I am a community nurse and we are a 24/7 service - someone should be able to go out and assess her needs and access a more suitable prescription to keep her comfortable.

There is a NICE guideline on palliative pain relief - please Google this and use this if you need to access further help. Do not be afraid to complain through the practice manager that the GP is not following guidelines - they should be seeking further support from the appropriate specialists to guide prescribing. A suitable modified release Opioid with a breakthrough pain fast acting opiate (oromorph or fentanyl) would be normal. Transdermal patches can be given for those who cannot ingest pills or solutions.

Have a gentle conversation about the assistance that can be provided by the hospice. A large proportion of their support is done via outpatient assistance and day hospice places are worth their weight in gold - activities such as music, exercise classes, art & crafts, movie afternoons are often offered in a relaxed atmosphere with palliative care team staff on hand to assist with advice, support and assistance.

Have a look at Maggie's Centre - the website is full of good advice and if there is a centre near your Aunt, you can visit and have a chat.

Many good wishes and supportive thoughts to you and your aunt, I hope you can get things sorted - don't be afraid to be persistent and use the NICE guideline to push back.

I had to have this discussion with my mom… she has stage 4 cancer and had mentioned to her care team that if chemo wasn’t doing anything she would stop treatment. They asked if she wanted to arrange a chat with their hospice team and she got very hesitant… right up until I suggested she rethink her stance on that because they are the ones that give out the good drugs.

We had some time to think about it and her treatments are working to slow the spread and growth, but it’s also given her time to decide that it’s a good idea when the time does come.

Honestly it’s hard, my own gramps refused morphine near the end because he was afraid of becoming addicted, poor guy. He did come around and used it after his hospice team convinced him.

I had similar decades ago. Someone very close to me had cancer go into their lymph nodes. After unsuccessful chemo decided to live out what they could with those they loved. One of their main enjoyment was sharing meals and eating.

I took them to appointments. This relative needed high dose steroids to reduce the impact of the tumours to enable them to be able to swallow. The steroids had worked really well.

The young doctor we saw refused to prescribe any more high dose steroids siting his reason as it would cause long term damage to the kidneys.

I was so cross. He was technically correct and he completely missing the point. Someone dying doesn't need long term functioning kidneys.

My relative therefore couldn't eat easily, stopped enjoying food in those last months and died 12 weeks later.

It was tragic. I wish we had known then about palliative care and NICE recommendations which I would have quoted to him. There were a lot of gaps in care 20 years ago.

I hope you get the meds for your aunt so she can enjoy life wherever possible. Xx

If she is in acute pain and cannot see a healthcare professional, then a&e should be able to give some emergency oramorph as a relief so that you can see the palliative care doc or hospice the next day. A better pain management regime with anti sickness as well as checking for other causes of pain like constipation can help.

sorry to hear about your aunt you sound like a good relative also you should complain to the gmc