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

.

no direct experience but I believe that with morphine there are hard decisions to be made - it depresses respiratory effort so a dose that is high enough to end pain may also hasten end of life. Pain management is not an exact science and it may be that they are doing what they think should be enough but it isn't touching it. I think the only thing your dh can do is to speak again to her doctor and beg basically. Is she at home? Would they consider taking her to hospital - she might get more pain relief there - perhaps an epidural would be appropriate?

Hiya Jimmy

You might remember that my FIL died from cancer a few weeks ago. He wasn't in discomfort or pain until the very end (it's different for everyone and dependent on the type of cancer etc).

Anyway, when he became uncomfortable, morphine was given and it took all the pain away. It also knocked him out and he didn't fully regain conciousness once the first lot of morphine had gone in.

The District Nurses explained that they had put him on 'The Pathway' which is basically, the end game and there were various doses of morphine and other steps to be taken in a kind of ordered mannered to help him through this final stage.

They said "It's not acceptable for our patients to be in any discomfort with the medications we have available to us today".

I don't know your MIL full medical history, other factors involved etc, and I am no medical expert but my (limited) knowledge tells me that no, your MIL should not be left in discomfort and they need to sort the correct meds and dosage out.

My thoughts are with you and your DH. Did he manage to get back there? (I remember there being a visa issue).

Thanks for posting...am doing my nut here trying to get info for DH. Have posted on Mac forum too. I don't think its acceptable for pain to be experienced in this day and age either.

Yes, DH managed to get a visa...they have contacts in high places and they pulled a few strings..just as well as it seems to be the end now...

I'm just so that they are doing blood tests tomorrow - its a waste of farking time - just get the morphine in and the dosage right iyswim??

Well it's bloody sad Jimmy but thank Gawd he managed to get back there.

Have the docs given any indication why they need blood tests? It does sound like they're thinking summat else is going on. It's hard to know what to say to you because we don't know the whole story.

What's your view on health care in the Middle East? Is it as good as you'd get here? If so, I'm sure they won't be putting her through un-necessary misery - they must have something in mind.

Well, its good if you have money but if not you are shafted as the govt hospital are shite.

MIL doesn't want to go to hospital as she is frightened she won't come out and from what DH has said, hospitals don't take terminally ill patients anyway - they don't see the point. There are no hospices and the family are doing all the care and drug admin...its shite quite frankly and am so upset to think she is in pain when she doesn't need to be - I KNOW the meds exist to make the end a lot more comfortable

DH said they are doing blood tests cos of the swelling in her legs and feet...I don't see the point - she's swelling cos she's not moving and her circulation is buggered...its just fire fighting if they do that. Imvho, the focus needs to be on pain management....

This is crap

So sorry to hear this. I'm a GP in RL, and it is always the priority in palliative care to ensure that there is (as far as is possible) no pain, suffering, distress.

Depending on the cancer, where it is, different painkillers can be appropriate, but morphine is the usual first choice. Normally people start on a short acting liquid version, then when you know how much they are needing to take in 24hrs to control pain, you convert to a longer acting tablet with the liquid as required for breakthrough pain.

Morphine can reduce the drive to breathe, and occasionally we do have to use it at such high doses that this is a concern. Normally, however, this is in the very end stages where the absolute goal is to ease suffering (for patient and family). We never use it to hasten death. In any case, if she is not already on morphine, she would start off on lower doses and build up, so any effect on her breathing would be immediately noticeable before it got as bad as that.

There are a lot of ways to deliver pain medications, and a lot of different pain meds. There are also a lot of reasons to have fluid on the legs in cancer. Some may make them wary of using morphine, but in that case they should choose some other painkiller. She should not be in pain.

If I can help any more, please tell me.

When my best friend was in the final stages of cancer she asked for lots of very gentle massages, I think it helped both of us as I wasn't just sitting there passively, it let me show her how much I cared.

Oh thank you so much...really appreciate you taking the time to post.

She has been very very jaundiced for the last week or so, along with rattly breathing She is very sensitive to touch and says she hurts all over. She drifts in and out of sleep all the time now, although no sign of coma.

I've just text DH the info about not being in pain etc and he said they have adjusted the dose. They are doing bloods tomorrow regarding the swelling but I'm not sure what the point of this is - as the swelling is due to the circulation decreasing isn't it? Not great deal can be done I don't think.

The changes in her seem to be every few hours now...I think the end is near...I want the end to be near as she's going through hell! I mean, how much longer can someone go with severe jaundice? The waiting is so awful

No useful advice but yes it's awful, watched my father go through this. Glad they have sorted out the dose now.

The swelling is usually just accumulating fluid, yes. Sometimes it can be just because the body isn't getting rid of fluid so well any more, plus she won't be moving much so not pumping the fluid out of her legs. Sometimes if the tumour is in the tummy it can actually reduce blood returning from the legs. Other stuff, too.

If she is jaundiced then that does affect some of the drugs which they can use. Jaundice also can affect consciousness levels. If they think that they can help any of her symptoms then blood tests are a good idea. If she has spread of the cancer to her liver and she is increasingly jaundiced and sleepy, then - I am so sorry - but there really probably isn't a huge amount that they can do, and she probably hasn't very long left. Ask your dh to ask them what they are testing for - is it for something reversible which will help her symptoms. If it is for something which they cannot help, or which would involve a treatment which would put her through any more suffering, then I think he should ask them why they are doing it.

As doctors who all chose to do a job to help people, some of us still even swear the Hippocratic oath when we graduate, it can be so very hard to accept that the only thing left for us to do is simply symptom control. And especially if we think that something is reversible - but it is always most important to be sure that what we are doing is the right thing for the patient. Just because something might be able to be done, doesn't always mean that it should be.

well he hasn't been giving me that much information but I think the bloods are to do with the swelling. I think they are hoping tht by reducing the swelling, they will help the pain...am not so sure

I did wonder about certain meds with the liver as if the liver isn't functioning, then would that reduce the efficacy of the meds as the waste etc isn't being processed?

She has had the jaundice for over a week now..DH said they are not sure what to expect next...I'm thinking it could be days with jaundice? I am looking to put a time factor on it as awful as that may seem as right now, I'm feeling this just will not end- its been nearly 4 months of it now - we are all struggling

The liver breaks down certain medications, so if it doesn't function so well then they can accumulate in the blood and cause problems. Sometimes it jsut means that a lower dose needs to be used. Morphine actually isn't so bad this way, most of it is excreted by the kidneys.

Her legs may well be uncomfortable, and if she also has fluid in her tummy it may be uncomfortable too. However, I suspect that if she has that widespread an accumulation of fluid, then there may not be a lot they can do to reverse it. If there is swelling only in her legs, but she has pain all over, I'm afraid I agree that sorting her leg swelling may not take away all of her pain.

Time... it's the one thing you need to know, the one question that can't be answered. Even when it's a patient I know well, know all the clinical details of, it's impossible. There's a person right now who we (at my surgery) told probably had a couple of weeks left in the summer. He's slipping gradually away, but he's still with us. From what you've said, she's deteriorating, and that is likely to continue. If they can't help the jaundice, then she doesn't have long. But it is far more important to know that the time she has left is spent without suffering than to know how long she has. I know you know that, but would encourage your dh to always question the doctors - not because they are not doing the right thing, but it is important he understands. Not understanding is frightening, feeling out of control is frightening, seeing your mother in pain is frightening. If he understands, feels a small measure of control, it will be easier to cope, afterwards. Otherwise he may always wonder, did we do the right things? I guess for you, you just want to give him a hug, I think what you're going through is desperately hard too, knowing your husband is hurting too, watching his mother suffer, but so far away. I do have to go to bed now, but if you need to ask any questions, please feel free. Or just get stuff off your chest. I'll be around - as will MN!

She vommited dark blood at 4am today - what does this mean??? I wanted to ring the Mac helpline as DH just text and wanted to find out the next stage and how long she has left but they are not open over the weekend

PS

Apparently she has an angio tube - could the blood loss be due to this? I doubt it though....I am so stressed

Oh Jimmy

No idea but I'll bump this for you.

I'm sorry to hear that you are all going through this Jimmy . I can't be anywhere nearly as much help as itscoldtoday as she clearly knows what she is talking about but I watched my mum slip away with cancer and its heartbreaking reading your posts. My mum was put on to a morphine syringe driver a few days before she died and although we knew she was coming to the end, I'm not aware of being told it might "speed things up". Mum was pretty much in a coma from then on really. Tell your dh to ask lots of questions so that he knows exactly what's happening and why. My thoughts are with you all x

hey puss so sorry to hear about your MIL. I haven't got any helpful advice to give but just wanted to let you know im thinking of you and if you and your ds need to get out and want to go for coffee or something give me a shout.

Hope your ok. x

Char - thanks for that Am with my family at the moment. Too stressed to cope on my own

DH seems to think the blood is due to the feeding tube...I've gently told him that its more likely NOT to be that as any abraisions from a tube would be fresh blood ie red and not dark blood. I think he's holding on to any hope tbh, its heartbreaking.

The last I heard he was going to have a nap while his mum slept as he was up with her in the night while she was throwing up

I really hope this is over soon for her sake - she's going through the mill

Sorry to hear her night got worse . Dark/black blood ("coffee ground") normally means that the blood has come from the stomach - the acid in the stomach partially digests the blood, turning it black. The feeding tube shouldn't cause enough irritation to cause a large bleed, but if it is, then TBH at this stage I don't think it would be a problem if it were just removed. But, again (sorry if I sound like a broken record) there are lots of reasons why someone can bleed into their stomach. The cancer, medication side effects, the liver problems...

Bottom line. No-one can tell you how long. I don't know her history, where the cancer started, where it is now etc. I don't know her past history either - people may have been in poor health before getting cancer, or they may be strong as oxes and hang on. And sometimes there's something they're waiting for - a date like an anniversary, or someone arriving (sometimes someone leaving - people very often die the minute relatives leave, as if they want to spare their loved ones the pain of seeing them go) and they hang on longer than you would have expected. But going on what you have said, she is jaundiced, unable to take food, vomiting blood, sleepy and in pain. She will probably become more sleepy, hopefully be more settled and less aware of pain (and hopefully be on more pain meds) and will slip away. A day? Two? A week? I'm so sorry, but I can't say. I wish I could tell you. I just don't know enough about her to do more than guess. Did they end up taking any bloods today?

Thank you so much for taking the trouble to reply - it really is much appreciated.

I've googled liver failure and I've read that vomiting is a sign of this, along with periods of confusion - both of which she has. I think the swelling of her abdomen is also Ascites as that is symtomatic of liver failure also...although I'm no Dr but it does kind of fit doesn't it?

I think they took bloods but have not heard from DH since this morning. I personally don't think that anything they do at this stage is going to help...she is not eating now, DH said a liquid diet (they buy her protein shakes from the hospial) if they are lucky...

I hope it happens soon really - she's really miserable with it and the tension for DH and BIL and SIL is awful..BIL said with every day she is holding on, they are dying with her.

She was waiting to see DH and he arrived on Monday...she started to go downhill badly on Xmas day so I guess the 'boost' of seeing DH has worn off. She hasn't been told she is dying though..although I guess on some level she must know. Very stressful as I think she doesn't want to openly admit she's dying so as not to upset them and they are not talking to her about it to not upset her. From what I've read from a spritual aspect, people go 'easier' when they have talked about things and said their goodbyes...its a shame to deny her that but in the M.East, cancer is very very taboo - its a pretty crap attitude really

PS

She hasn't had a bowel movement in 5 days either

Oh how

No advice but just to say sorry you are going through this.

ItsColdToday - just had a text from DH. They didn't bother doing the blood tests after she started vomiting blood.

They are having to empty the tummy of blood so I guess there is occult blood loss (is that the right term?) from somewhere...

He said the whites of her eyes are so yellow they are now orange but they now have her pain under control and she is comfy so that is brilliant news. Apparently she is quite with it when she is awake...I guess that means the morphine is doing its job

The jaundice does sound very advanced though so I think the next 48hrs are crucial..

I have been thinking of you Puss.

[squeeze]