MIL not being honest with palliative care team - how to persuade her she doesn't need to be in pain?

[CMOTDibbler]

MIL has mesothelioma, but is in total denial about it being terminal even though from the start she wasn't offered any aggressive treatment, only symptom management.
She accepted liquid morphine when getting really awful pain when the tumour got into her spinal cord (she's had a dose of radiotherapy which has reduced this since), but FIL is obsessed with her getting addicted to it. She admitted at the weekend that she has 'really uncomfortable' days and nights, and is very breathless at times. Both of them look absolutely exhausted as shes awake 5 times a night
The palliative care team have been ringing weekly, and are offering long acting pain relief, but she won't tell them how bad it is, and isn't telling them how many times she's up in the night and so on.
I'm trying gently to tell her she doesn't have to suffer, but as FIL (and two out of three sons) are so deep in denial, and very much 'oh, she can still have chemo' its hard going as they minimise everything.
Realistically, she probably has only a few weeks to live (she was diagnosed a year ago and average life expectancy would be 7 months - the RT she had is for people with less than 3 months to live) and I can't bear to think of her being in pain and scared with the breathlessness for the little time she has left.
Any ideas on more that can be done to help her accept the help she needs? Of course only FIL is going to the consultant with her atm

No advice on how to get her to be more honest but I wanted to pass on my sympathy, my dad had this too and was also in denial (or shielding my mother from the truth) it is a truly awful disease.

Thank you - I am having a truly awful year as both of my parents have died a month apart, and worrying about MILs end (as both of mine had good deaths ) is probably more difficult then it might otherwise have been

Can your dh speak to her and his family and say she is in pain. Do the palliative team visit her at home. A long acting pain relief tablet or patch could help. Perhaps they can talk to the family. Is she getting any help at home with personsl care etc.

FIL/BILs aren't listening. Apparently we are 'the voice of doom' as through this we have tried to prepare the BILs that their parents are lying about what is going on, and there wasn't a lot of time.
We saw them in person at the weekend for the first time since lockdown - MIL is obviously shielding - and dh went for a walk with his dad so I could talk better with MIL.
No home visits, just phone, but she does have an in person appointment with the consultant this week after a phone call last week. I think its all too easy to cover up how bad things are when she doesn't have to walk to the phone - now fil always picks it up and takes it to her, wheras you never got it before. And even then she can't talk for long.
I think (and I think the palliative care nurse was offering) long acting pain relief would make a massive difference - but as I say, fil is obsessed with her becoming addicted

Addicted? They really are in denial, are Macmillan involved,
maybe you could speak to them they must come across this situation a lot (I used to work in a children's hospice and we saw it quite a bit there)

I think your DH needs to speak to his father and potentially the palliative care team.

The sad truth at this point is that addiction in this scenario isn't something to be concerned about - but that's possibly the point.

The worry about addiction implies she's going to get better.

It's an awful situation but FIL needs to understand that this optimism isn't going to prolong her life but make the time she has left unnecessarily harder.

Hopefully your DH can explain that to his father but if not maybe he can ask the palliative care team to speak with him.

I'm sure it's a scenario they've come across before and having them speak to FIL may help him come to terms with his wife's diagnosis and her end of life care needs.

Call Macmillan for advice on how to handle the situation and what support might be available - not in the sense of making her have more help than she wants but in the sense of "how do I help MIL". Or call her palliative care team?

DM argued the toss about DF's meds, they would cause liver damage etc, she read the fine print and said he couldn't have them because this or that.

Do you have contact info for anyone in the team? You can speak to them even if they can't speak to you. You can tell them she is struggling, and that FiL is in denial.

I had this with my Gran, I am so sorry for what you are going through. People may not agree with this, but I rang her MacMilan nurse and told her bluntly my gran is refusing to admit her pain, she's in agony, please can you help her, and they came out and persuaded her to have the medication. It really helped a lot. I hope you are ok, sending much love.

Your DH should call the palliative care team himself and explain the situation. I'm sure they are well used to dealing with this very thing and will have ways they can broach the subject. Denial is hard to deal with. When my FIL was close to death it felt like I was the only one who could see it. My DH was talking about 'going to visit in May' (when in early Dec I felt he had only days/weeks left - DH and I live in another country), MIL was saying 'He's been this bad before and always bounced back', etc. He died in Jan, totally unexpected by me, utterly blindsided them

*expected, not unexpected

Denial is awful. My stepdad died of prostate cancer and also had crohns disease anda few other issues. I always remember him going into hospital and the dr taking him off all the meds he took. He was delighted and thought this was amazing- didnt realise they were stopped because he was only weeks from death so no need to treat other conditions.

I agree you should call the palliative care team. Say something like you know they can't discuss a patient but you need to pass on an important message and then just say what you wrote in your OP.

Sorry you're all going through this. My auntie died of cancer earlier this year and I still find it hard to believe. It all happened so fast. Thinking of you all 💐

Trouble is, FIL point blank refuses to talk about things not being goog, refused to even start a conversation about life expectancy, and is still talking about her going on a clinical trial.
We don't know anything about the palliative care team - MIL only admitted that they were now seeing her last week - and they could be attached to a number of places. MIL/FIL are keeping the family out of things as much as they can, and she has a lung specialist and an oncologist at different hospitals, DH isn't even sure who their Gp is

Bear in mind MiL has gone along with this all her life. She is vulnerable now, but she has agency and is choosing to go along with this narrative.

I had to remind myself that Dad had always put mum first, would walk over coals and swear black was white rather than upset her. It was the choice he made consistently for 50 years. It wasn't my job to undo all those years, no matter how much I may have wanted to. If his illness hadn't been terminal then maybe I would have, but nothing I did could have saved him.

Okay - so you said you found an opportunity to speak to MIL alone.

Next time you (or ideally your DH) do so try and get information about the palliative care team - which hospital etc

In the meantime give Macmillan a call for advice.

It's tough but if your DH is worried he's really got to find a way to help his mum.

People in denial aren't trying to hurt anyone, they are trying to protect themselves and their loved ones albeit in a misguided way.

It's hard to admit that you're on a path that has no happy ending but unfortunately the impact of denial, especially when the patient is vulnerable or dominated by the person in denial the consequences can be awful.

Your MIL (as you obviously understand) has the right to the very best palliative care she can get to ensure the last portion of her life is as comfortable and productive as it can be.

Picklemewalnuts, you are quite right that she's gone along with it all her life. She told me on Saturday that FIL had banned her from giving the boys paracetamol or aspirin when they were children as he worried about it - and she never did, even when dh had measles and was terribly ill.
And I completely sympathise with denial, and if it wasn't causing her unnecessary pain I'd happily play along.
I'll phone her tomorrow on the pretext of asking about her new Kindle (she listened to me on that, her arms are too weak to hold a book up) - and try and see whether I can plant some more thoughts about dealing with her night time symptoms before her Friday appointment.

Sounds like FIL doesn’t like medication in case of adverse effects. However he needs to understand that now he is being very cruel to MIL. My MIL died of cancer and she took loads and loads of oral morphine, it helped her. I remember saying to her that there was no issue with becoming addicted to morphine when you are dying. (Not as bluntly as that). Your poor MIL - terminally ill and surrounded by idiots who’d prefer to have her suffer than let her have enough morphine. Abusive. Ignorance is no defence.

Something similar happened with my dear aunt and uncle. He had terminal throat cancer, prescribed an immense ton of Morphine for pain. My aunt was caring for him, and worried about mixing meds, so would skip several doses of Morphine "just in case", and he was so week he couldn't stand, let alone administer the meds himself (was being fed through the stomach). He was in agony.

Ultimately DM lost it and seethed "The doctors prescribed these meds. Of course he can take them together. Don't let him suffer any more, ffs!"

It's been over a year since he passed, but it still guts me to remeber how much pain he was in.

Its understable that they are in denial in this difficult time. The addiction worry is a non issue and they have no right at all to try and withold her medication however upset and unrealistic they are. I hope she finds the inner strength to tell the doctors and nurses how she really feels. There is no need for her to be in pain or distress.

Hi. I'm so sorry about your MIL. My mum is a palliative care nurse and she told me before this is really common for a variety of reasons. She would always put the patient first whatever the relatives say and they cannot decline painkillers on the patient's behalf. They would also be very experienced at looking for signs of pain and other symptoms and gently suggesting to the patient that it can be relieved.
Ultimately though it will be the patient's choice. Xx

Thanks all. FIL (though god knows I've had my problems with him) isn't a bad man or abusive at all. He is massively anxious, and right now, his anxiety has escalated to new levels.
Its not so much that he would prevent her taking anything, and if a dr/nurse said 'here is a prescription, you need it' there wouldn't be an issue (apart from him fretting), but they are at the stage where MIL minimises everything and when FIL is asked what he thinks he'll say ' oh yes, what she said' rather than 'actually, the pain is getting to her'

My dad had mesothelioma, it’s a horrid disease... he had the short prognosis version too (sarcomatoid).

He really needed pain relief for a good few months before he died. It sounds like your MIL is definitely uncomfortable, but maybe the pain is not yet unbearable at this stage? It is horrible to think it might need to get that but honestly I don’t think my dad could’ve coped without pain relief. I hate to think of your MIL not feeling able to ask to be made more comfortable but I wonder if it gets to the point where it’s really needed, she will.

Dad had a lot of oxynorm but was never really told how to use it - basically that you have to take it in anticipation of pain, not when the pain hits - so was drowsy a lot of the time, which pretty much meant he wasn’t taking it properly... the pain used to come in bursts/waves so he could feel it coming on.

At times it felt like things had to get overwhelming generally before something would happen to notch up the support or meds. I hope that doesn’t happen for your MIL but I do also think that my dads palliative team would disappear a bit if they thought he/we were coping “ok”. So we had to push a few times before they did anything.

You’ve had a tough time op, losing your parents too, now this. My heart goes out to you, it’s a living nightmare.

It is really horrible isn't it BonApp, and I'm so sorry you lost your dad to it.
MIL does have waves of totally excruciating pain where it's invaded a nerve root (hence the RT), and she'll take oromorph then, but she has lower level pain all the time which she will sometimes take 'half a dose' for when she can't manage anymore, but is really ekeing it out so I think spends ages in increasing pain before what she would describe as giving in. And yes, really not getting the idea of managing pain all the time rather than waiting for it to get bad

Reading this is extremely distressing-I'm a registered nurse AND a breast cancer survivor. I wouldn't have wanted to live had I not been allowed to be honest about my severe pain postoperatively and post radiation. I'm not exaggerating because unfortunately I had complications. I would pull the FIL aside and inform him he is being fucking ridiculous and his wife is clearly suffering-morphine can help with the work of breathing as well as pain. Whatever it takes to help your MIL must be done. It's abuse at this stage to be denying her access to pain relief