Urgent - anyone with experience in pain management of terminally ill cancer patients - please can you advise?

[MrsClausinJimmyChoos]

As I am sure most of you know, MIL (in the Middle East) is terminally ill with cancer.

Have just heard from DH who is out there with her that she has been in agony since lat night. They are doing blood tests tomorrow to ascertain the level of swelling (her feet/legs are swollen) and for the next step in pain management.

Now, I don't think this is right at all - I've read other stories of cancer and that the Mac nurses (which they don't have out there) manage to keep the patients pain free with correct dosage of morphine

She had morphine last night but apparently, it didn't have much effect. Am sure she should not be aware of her pain and they are doing something wrong

Any advice I can give would be so much appreciated. I don't want her to have another night of agony for her

It's no trouble, I name change for professional posts, but under a different name I'm on MN a bit (and have had enough help from it myself in my time).

Yes, sorry, when I talked about fluid in her tummy I was trying not to use medical terms, but ascites is what I meant. It is something which can be drained, but with a large needle (sore) which can lead to infection in the remaining fluid, and which occasionally can lead to a perforation in the bowel. Which is why, if someone is very ill, it's just not worth it.

Liver failure can lead to sleepiness and, dh be warned, sometimes a lot of confusion (on top of the morphine).

Her constipation may be because she's not eating, side effect of painkillers (codeine, tramadol, morphine), pressure effects of tumour on bowel. It can be quite uncomfortable and can also lead to confusion. If it's a worry, and if she's taking anything by mouth she could take lactulose (a laxative, which is also used in liver failure to reduce encephalopathy). Or suppositories.

Liver failure means that the blood doesn't clot properly - the liver is very important in blood clotting. It isn't unusually to have bleeding in advanced failure. Her skin may bruise easily also. She may also have a diversion of blood from the liver to other places, so stomach bleeding is more common, and they get dilated veins in their skin.

Eating isn't important. If her liver is so badly failing as it sounds, it is unlikely that she will be absorbing much from anything which goes in. It makes relatives feel better to think that someone is getting food and/or fluid in, but TBH, it's unlikely to be doing anything. If her mouth is dry, dh should be able to get hold of little mouth sponges to relieve it. If she is bleeding a lot into her stomach, giving her stuff by mouth, I don't know, I just think I'd be talking about removing the NG tube myself.

I'm so glad that her pain is under control. FWIW I agree with you about the spiritual side, I can't believe she doesn't know, but totally agree, they 'need' to say goodbye. But that's their culture.

Sometimes, people to get a lot calmer very near the end. Whether they say it out loud or not, they accept that they're dying, and often go quickly after that. I hope she has a peaceful night. I'll keep checking the thread.

Again, thank you so much. Its such a relief to have someone giving advice, I can't tell you how much! I know its not very mnet to hug but am certainly sending some your way!

I don't know if she still has the tube in...I too don't think there is any point as I've read they don't absorb anything at this stage. However, I guess they must feel they are doing everything possible to help - well, you would wouldn't you as its your loved one.

DH said she is 'stable'ish' atm..I am wondering if this is the peaceful stage people experience before the end...I guess when the morphine dosage is right and the pain is controlled, the patient is probably quite peaceful. Was alarmed to hear how yellow the whites of her eyes are though - this is really serious.

DH said she now knows its the end...am glad in a way that she knows, hopefully it will give her a chance to say what she wants to say but has perhaps been holding it back

The waiting though...am so drained! I've got Meneieres disease and tinitus (am profoundly deaf) and stress makes it ten times worse!!

Oh goodness, (gentle) hugs back at you. I'm glad to have been of help. Will check back tomorrow morning, hope you manage some sleep.

Just had a text from DH...her night was very bad, lots of moaning, high temperature and restlessness. She seems worse at night than during the day time and he said they dread the nights now

He said they are checking her blood pressure and because its ok, they seem to think there are a few more days left as her heart is strong. I don't think blood pressure is relevant at this stage is it?

I have to say I have never checked anyone's blood pressure at this stage, it is utterly irrelevant. How is she having her morpine at the moment? She should be getting it by syringe driver by now with an anti-sickness in it (through a minute needle just under her skin). If she's very restless and agitated they can add something like levomepromazine, or midazolam. It may make her a bit more sleepy, but it will make her a lot less agitated, and less frightened too. All of these meds can also be given as extra doses, so though she would be getting a constant level over 24 hours through the driver, if she was especially sore she could be given extra morphine, or extra anti-sickness, or whatever. It is imperative that she is not sore, and that her family doesn't see her in distress because that is what they will always remember. If she is worse at night, she needs more meds at night.

I don't know how she is getting her meds - I will ask DH. They seem to think that as her bp is ok, it means she has more time left - I don't think this is the case at all. I've asked him about her hands and feet as my reading has lead me to understand that near death, the hands and feet go cold, but he said they are warm, even hot at times. Her temp was high last night which I think is due to the liver as its the main heat producing organ and if that is packing up, then it will cause fluctuations in temp.

I thought the restlessness/moaning was the transition phase i.e the proactive stage of death (I've been googling too much I think!!). I didn't think it meant she needs more meds?

Right, DH said she is getting the meds under the skin most times and sometimes by IV so that's good I guess? She's also taking anti sickness so that's good also. He's going to find out about the two meds that you mentioned to calm her agitation etc - thank you so much - I really do appreciate it.

Are the warm hands/feet significant at this stage?

Don't get me wrong - I don't believe in sedating a person into unconsciousness to make death faster/easier for all around, but if someone appears to be in distress then that is a symptom, and like all unpleasant symptoms it can be treated. It may be a sign simply that she is in pain and needs her pain meds increasing, but sometimes it really is just distress, and while you need a gently touch so as not so overdo it, medication can help that too.

Int his country, thanks to the lovely Dr Shipman, we can be a bit afraid of using 'too much' medication, and to be sure a natural death can be the ideal way to go. But not if it involves suffering. If she isn't on a syringe driver, I would want to know why (though there may be differences in a different country of course). Syringe drivers give a constant level of medication over 24hrs. If you wait for someone to become sore, and then give pain relief it takes longer to be effective; and besides, why wait for them to be sore? If you look at how much morhpine someone has had in the preceding 24hrs (by mouth or by injection) then it is easy to convert into a syringe driver. That way there is a constant, background level of painkiller, and no trying to get someone to swallow something/wait for it to be absorbed by a poorly functioning stomach/seeing it vomitted back up; or no needles every few hours if she's getting it by injection every time.

Her heart may well be strong, but in my opinion her BP is meaningless because (I really sound like a broken record here!) so many things can affect BP. Pain and anxiety make your BP go up for example. And you're right, her systems are no longer functioning normally, 'normal' doesn't really exist any more for her.

People's systems often do shut down at the end, hence the cold hands and feet. Though if she has a fever this may not necessarisy be so. The fever may be from the liver, but she will also be susceptible to infection at this stage. Chest infections, infections in ascites, that sort of thing. If her chest is rattly, again there is a medication which can go in a driver which cen help.

DH text and said the medication was being given manually under the skin. I've googled syringe drivers as I didn't know what they are and have found out they are battery operated pumps so from what DH has described, it doesn't sound as if a syringe driver is in use at all

I've told him to investigate this but I'm treading a fine line because it must be awful knowing what level of care is available here that she isn't getting there - they are doing all the med admin themselves with just the doctors instructing on dosage - its so wrong isn't it? Not to mention the stress caused to the patient/family. It may make him feel more helpless iyswim but on the other hand, I do feel as if I have to tell him what I learn

I've told him about the drugs you mentioned but did obviously stress he needs to speak to a Dr first - it isn't as regulated here as there and so I don't want them to be mixing and something bad to happen. I've been googling end stages and it does seem as if the next couple of days are going to be crucial. I was convinced that it would happen last night but bless her, she's fighting it. The family are starting to dread the nights now though as she moans and is so restless. Dh said was awful listening to her

I meant its more regulated here than there! Duh!

Oh arse, forgot to name change!! Have asked MN to delete post, so here's a copy of what I typed for when if they are kind enough to delete it!

They have to administer the meds themselves? Bloody hell. My message to them, then, would be not to be afraid of giving meds. It is scary giving medications when you don't know how much/often (despite having doctor's instructions - to be the one actually administering is frightening). If they have the morphine prescribed, use it if they feel she is sore, don't wait until the pain gets too bad. Do you know how much/often it is prescribed? The 'standard' dose for morhpine is every 4 hours - but that's for people who are not terribly unwell, people in early stages, or even people with just a lot of pain like waiting for surgery for something. For cancer, and especially in the end stages there is much less of a schedule. Every 1-2 hours is perfectly ok if she has a bad patch (ie not every hour for hours, just if they've given a dose and it doesn't seem to have worked, you don't have to wait 4 hours to give another dose).

I know that syringe drivers might just not be available to them, and subcut (under the skin) doses as needed is fine, it's going to the same place (a syringe driver is sub cut too) so will be absorbed, it just means you lack that constancy of pain relief.

If nights are the worst, I really would think about an extra bit of morphine, or some levomepromazine which can also be given by them subcut. They must be dreading tonight

The pain relief is every couple of hours now I think....they are administering it themselves sub cut and via IV. He said she was talking to people that weren't there last night, talking gibberish and that her eyes were rolling a lot - what causes the eye rolling? Is it lack of oxygen to the brain? I warned him this would happen so thankfully they weren't too shocked by that

In Oct when hubby was there, she had sepsis and he had to do the antibiotics via a canula and he hated it as she used to say it burnt as it went in so he had to do it very slowly. A mac nurse would have prob diluted it or something but they just don't have any help...its scary to think about. They are going through hell. Really, it makes me realise how lucky we are in this country to have such a fab NHS and GP support, with hospices and Mac nurses...I never really appreciated it until now!

Am so sorry. It sounds like the death no one wants -- slow and painful. I mourned my dad being killed in a car crash, but in hindsight, it was quick....

At least you will know that everything that could have been done, has been done and that your DH was able to be with her...

Does she know that she's dying or is it not part of her culture?

My uncle had a sudden heart attack a few years ago and the quickness of it was awful, however, now I'm seeing what MIL is going through, I realise that at least he didn't suffer iyswim? Not that it makes it any easier but ykwim

She didn't know she was dying before - they didn't tell her - its so taboo over there to talk about cancer as no success stories iyswim?

However, DH said she now realises the end is near. I've been reading about death a lot and it seem some people do 'hang on' because they have unfinished business and part of me wonders whether there are things that she needs to say that she feels she can't say for fear of upsetting anyone...who knows..she has been talking to people that DH and family can't see, talking gibberish and her eyes have been rolling so she is showing all the 'end of life' signs but really hanging on....it is a horrible death...DH is stressed to the max and dreading the nights

When my grandfather was dying, everyone dashed to get there, and he was going in and out of consciousness... He was clearly in a lot of pain, much like your mil.

My dad said, 'Dad, it's been a great life. I love you. It's OK to let go....'

And he did

Sometimes people need permission, iyswim.

I don't think that the eye rolling has any underlying cause other than her slipping in and out of consciousness. Liver failure can cause abnormal eye movements, but normally side to side, not eye rolling. Hallucinations from liver failure, morphine, infection, you name it... Can't believe they had to give ivs. The NHS has its faults, but we're very lucky to have it [biased]. I hope it's a better night tonight.

DH text..said as its dark now (2hrs ahead there) she's starting to moan. He's got one of the meds you talked about (but he's checked all the dosage etc out) and going to give her that tonight to see if this makes a difference

I am so drained....every day I think ok this has to be it, her body surely can't cope with it anymore, and she fights on...I cannot see an end to this at the moment and every day that goes by,she's going through it

Ps I did think about suggesting to DH to talk to her about 'giving her permission' to go as I've heard some patients are just hanging on for this but I'm frightened if he did that and she went, it would be my fault so I haven't mentioned it...sounds mad I know!

thinking of you mrsclaus - we had this in 1995 with my mil thankfully we were in England and had support from the mac team and marie cure xx

I really hope the medication makes a difference tonight. I am at work tomorrow, but will check in when I can. I hope you're holding up too.

I asked him if the new meds had worked and he said they can't give it to her until 1am and to go to bed and he'll tell me tomorrow...er...thanks for that...appreciate he's stressed but a bit fed up with the very brief text messages and absolutely no interest in our son while this is going on...

oh and she has a temperature again....

I can't take much more of this!

Thinking of you. It must be so difficult for you, and your poor DH.

ItsCold - she had a better night and I think that'sdue to the meds you recommended - I could kiss you! Thank you sooooo much!

That aside, she is worse today. DH thinks the next 24hrs are crucial. She has the Chenye Stokes (sp!) breathing so I think this means the end is near?

He asked me if there was any point in feeding her supplements through the NG tube so I said well, from what I've read on the cancer websites, no. At this stage, food or supplements are not absorbed by the body anyway and the tube is probably more of a discomfort than help. I've said to keep her mouth moist with ice cubes/lip balm, raise her head slightly to stop the secretions pooling in the throat, to keep the lights dim and tell her who they are, who is in the room with her, gentle touch etc. I really hope I've given the right advice - its all what I've found out from my resarch.

His cousin is an A+E dr and she said if she hasn't been sick, then its ok to give a little food via the tube but I disagree...am sure I'm right but I did stress to DH that his cousin his the Dr here not me and that the decision has to lie with them - am terrified of giving any advice that maybe wrong and make the end sooner or something!!