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Syringe Driver End of Life

BriteMe
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My dad was diagnosed with terminal oesophageal cancer with secondary mets in his lungs and liver on 23rd December.

He obviously has trouble swallowing his morphine tablet and anti sickness tablet so as of 4 days ago he had a syringe driver fitted.

He is now asleep most of the time, rambling in his sleep.

when he does wake for about 1 minute (if that) he slurs as though he’s incredibly drunk.

Is this because of the driver or his illness? Why has it coincided with the driver being fitted? Do you think if they lowered his dosage he would wake up more?

im so scared he hasn’t said his goodbyes and now he won’t be able to.

has anyone else experienced this.

thank you 

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    Hey there, 

    I'm so sorry you're going through this. My dad got diagnosed about a week after yours and it's horrible. I don't know about syringe drivers but others will be along soon to help you out with that. 

    All I can tell you is that initially my dad was given way too much morphine and he was in exactly the same state as your dad. For about 3 weeks we were told it was his illness but like you said it coincided with having the new meds. Finally when we saw the consultant she agreed the medication was causing it. A week ago that changed him to oxycodone and he's been brilliant again. He didn't eat for 3 weeks and we had to feed him drinks using a syringe but now he's eating and drinking again, he's much better. I'd say your dads meds need looking at for sure. I really hope that helps even though it's not exactly the same thing. Take care. Xxx

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    Hi,

    Sorry to read about your Dad's situation.

    Based on my Mum's end of life care and my wife's experience after a major operation, that sounds like the morphine kicking in more than anything. The syringe driver only regulates the delivery of the drugs and saves having multiple injections per day with a hypodermic needle it doesn't affect the effectiveness of the morphine. 

    Talk to your Dad's care team - especially his GP if that is who is prescribing his drugs - and talk about your concerns. I'm not a clinician but I do know that it can be difficult to get the right balance between pain relief and almost knocking someone out. Reducing the dosage might help him become more himself.

     

    Best wishes

    Dave

     

     

  • Offline in reply to davek

    My mum was the same once the syringe driver was put in and her dosage increased over the week with her final 3 days she couldn't speak and slept most of the time. The district nurse told us this would happen but we all agreeded we would rather see her sleeping than awake and in so much pain and aggitated like she was.

    She started on 20mg was upped to 30mg and 10mg midazolam then finally at the end 40mg morphine & 20mg midazolam.

     

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    Heya,

    Firstly I'm so sorry to hear of your Dads diagnosis. It's such a cruel disease, and being unable to eat etc can only make it worse for him and you all. 

    As everyone else who has commented has said, I would also definitely say its the dosage of morphine that is being given. The syringe driver is just something that can give someone constant round the clock pain relief, which is what is needed in these situations. It may be that if they reduce the dose and he does become more alert, that he can feel pain a lot more, become uncomfortable and in pain. As Dave said, there's a fine line to the point of making someone sleep all of the time, but sometimes it's better for them to be sleeping peacefully, pain free, than be alert and aware and in so much pain. So I'd definitely speak to his medical team for their opinion, and explain that you think it's the medication, as before that he wasn't so out of it. If they do lower it and he becomes agitated and in pain, they may higher it back up so that he isn't suffering. 

    I hope you manage to sort this out for him, and I send lots of love to you, him and the rest of your family. 

    Alexia x

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    Mate please if things are still good get dose lowered I'm going through the same now and I had it lowered and it gave my mum back but trust the end is near.

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    I'm concerned about this for my dad. Because he is a big man, when first signs of aggression and agitation appeared the reaction has been to sedate him with midalozam. I am not sure this is the right course of action, because he still appears to have plenty of energy and no longer complains of pain, and to be honest even when he was complaining of it this weekend before he went into hospice it was a 6 out of 10, not excrutiating pain and as soon as they gave him intravenous drugs in A&E he was doing much better. He keeps saying he wants to get up, but he is now too weak to do so, he is unable to retain the information given because midazolam is ruining his memory. He is unable to actually communicate effectively now because these new drugs are making it impossible - there is no proof and has been no proof the cancer is in his brain, the scans were done a couple of weeks ago - that is not to say this has not changed, but he has been on chemotherapy for the last 2 weeks as well and was due to be reassessed today. He has not complained of pain, but he does if he is moved abruptly before sedation.. I don't want him to be in pain but I also don't want to see him become a vegetable and incoherant. I think that drug dosage is a science, care is a science, the need changes depending on what is happening. He had a lung infection, and they gave him antibiotics which did not react well with his stomach so he complained of stomach pain and ended up in hospital, then he went through a bout of agitation.. I believe this agitation bout can be ended with possible reasoning with him.

     

    I absolutely don't want him to go through pain - and if the agitation is severe again then .. fair enough I just feel that it was maybe quite a rash decision to keep him sedated after this outburst of anger from him on the Sunday. He did threaten to hurt people, he did grab a nurse by the wrists, which was painful for her, but I convinced him to let go and sit down.. but since that intervention - any time he shows signs of getting up, or being a bit rude or making demands then he is sedated. He hasn't really done anything wrong, I think he is just confused from the drugs and .. i don't know. This whole thing is so cruel and horrendous.. In many ways I definitely do want it to be over but at the same time I hate how everyone has given up on him and will be discussing his death and funeral while he is there, sedated or not or partially concious I hate that so so much .. and there is no signs of actual organ shut down, they have given him this drug that slows his breathing literally to a halt it is not a matter of his body shutting down - they're making it do that in my opinion, and making it so he cannot eat by making him asleep. I just cannot bear to see him like that. And to be honest, if they agree to let him off the medication, even if he is agitated then I will say my goodbyes there, when he can hear me, and understand me even if he is angry - and then let them do what they need to do.. because I don't want to see him like this any more.. I can't.

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    Hi Extraordinarygirl,

    So sorry to read about your Dad’s condition. 

    His unusual behaviours may well be a side effect to the drugs, combined with fear, rather than being caused by his cancer. People can become very fearful towards the end of life, especially if the pain relief leaves them confused.

    Sedation will help calm his fears and make him less uncomfortable. 

    Best wishes

    Dave

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    Hi

    My 21 year old son is currently in the same situation as your Dad. My world is broken. He had his syringe driver put in 4days ago. 
    He is on a very high dose of morphine.

    He is slightly slurred, but still lucid. He was diagnosed in 2019 with oesophageal cancer and secondary met in his stomach. He now has a tumour blocking his liver and had two liver drains in.

    He still remains his amazing caring funny inspiring self! My hero. 

     

  • in reply to Sammiekev

    Hi Sammiekev,

    Welcome to Cancer Chat - I'm so sorry to hear of your situation. I just wanted to send a reply to say that BriteMe hasn't been active on the forum for a few years now. Hopefully you will receive a reply to your post, but if not then do feel free to create a new discussion on the forum to hopefully generate more replies from others on here.

    We're always here for support if you need it.

    Wishing you all the best,

    Ben
    Cancer Chat Moderator

  • Offline in reply to Sammiekev

    Sammiekev,

    My father is soon to move to a syringe driver but I have nothing helpful or wise to add I'm afraid! I just wanted to say I'm so sorry to hear about your son. It was a while ago that you posted but I hope you are okay. Your post really got me and I couldn't read it without replying (even something as inane as this!) really hope you're doing okay.

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