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End of life - to sedate or not to sedate?

(17 Posts)
rebellove Fri 15-Apr-16 21:29:11

I lost my DF last year to pancreatic cancer. We looked after him at home with the help of the district nurses and Macmillan. There's something which troubles me a little. He was given morphine IV plus patches and was sedated with increasing doses of medazolam after which he couldn't communicate with us. He was very unsettled and restless with uncontrolled twitching especially of his legs. He couldn't speak hardly. It really bothers me that the sedatives stopped him from being able to communicate with us. He was unable to tell us how he was feeling or how much pain he was in. I have since read that the sedative is really only to settle the anxiety of the relatives so that they don't have to witness the stress of dying. This isn't right. All I wanted was my dad to be as comfortable as possible but now I'm haunted by the fact that he may have wanted to speak to us but couldn't because of the drugs. Any thoughts on the appreciated. TIA.

Starstruck2016 Fri 15-Apr-16 22:09:47

The diamorphine and midazolam ( and sometimes hyoscine for secretions) is given via a tiny needle subcutaneously gradually infusing over the 24 HR period and is for patient comfort..pain, twitching, pain on turns, nausea, secretions, and general discomfort. Diamorphine and morphine and midazolam don't usually cause twitching, .that may have been his condition, and the sedatives would usually help with the twitching. The reduced conscious level is part of the dying process and although the diamorphine and midazolam are sedative, their introduction and dosing/ titration is done according to the stage of the dying process and how comfortable the person is. It's not like in films when people converse and are normal until the moment of death..death from cancer is usually a process over days and in those last days there is usually coma.
I hope I can reassure you that you acted in his best interests and eased his passing.
All the best OP flowers

VimFuego101 Fri 15-Apr-16 22:13:33

Sorry for your loss flowers my dad passed away from pancreatic cancer too, bastard disease. He didn't have any painkillers at the end apart from a morphine patch, but was still comatose, only stirring occasionally, for the last two days. I think his system was just slowly shutting down. So i would say your experience is part of the process, regardless of whether the person is sedated or not. I hope that helps you feel a bit better about it.

Coldtoeswarmheart Fri 15-Apr-16 22:17:03

Whem DM died her consultant explained that death is a process, not an event. She wasn't sedated but was comatose in her last 72 hours or so. I'm not sure sedation would make a great deal of difference?

rebellove Sun 17-Apr-16 11:53:17

Thank you for taking the time to reply and I do feel somewhat reassured now - thank you. There were times when he showed that he knew what was going on until the last couple of days when he went into a coma. Things go through your mind afterwards but I guess that's natural. I hope we did our best for him.
Sorry for your loss too VimFuego101 flowers Yes it is a bastard disease. I've never come across anything so aggressive and rapid. He lasted 6 months from diagnosis. It was stage 4 with metastasis to the liver and yet a scan 6 months prior was clear!

Heebiejeebie Tue 19-Apr-16 20:19:01

i just wanted to reiterate the advice above. When someone is dying of pancreatic cancer their organs shut down, meaning the body doesn't clear toxins. This leads to drowsiness and coma, the morphine during this period makes sure they are comfortable during a stage when they are not alert enough to communicate clearly. The treatment was for him and not you. Don't beat yourself up.

rebellove Tue 19-Apr-16 22:21:19

Thank you Heebie. It's the sedative that concerned me - that it might have stopped him from communicating with us. I hate the thought that he felt paralysed. Perhaps it helped ease things. I just don't know..

FourFlapjacksPlease Tue 19-Apr-16 22:32:47

my dad also died of PC. I would echo what everyone else has said, the last few days he was barely conscious and not communicating. We gave him sedatives in the last 24 hours as he was getting quite agitated and we felt it was better for him to be calm and as pain free as possible. I think it's quite unusual for people to be talking easily and be conscious in the late stages of dying.

Whatever choices you make in this sort of situation are made with love, and to give somebody a dignified, calm death is such an important thing to do for them. Be kind to yourself. I'm very sorry for your loss.

Heebiejeebie Tue 19-Apr-16 23:50:54

The midazolam helps with anxiety, agitation and jerking (myoclonus). It's deeply calming, it's to ease someone's last days and hours, not to knock them out. It wouldn't have made your dad feel paralysed or prevented him from communicat with you, had he been able. Take care.

itmustbemyage Wed 20-Apr-16 00:22:52

My dad died from lung cancer he survived for two years after his very delayed diagnosis he was as fit and well as he could possibly be ( painting the kitchen the day before he collapsed) but after he collapsed at home he never came out of his coma but we never felt he was trying to communicate with us he died two days later, he was sedated but we knew he was ready to go and it made his passing more calm and more bearable for my mum which is what he wanted. Having sat with him for those two days in the hospital myself and other family members all said that when our time came the way my dad died is the way we would want for ourselves. I would however urge everyone to make sure that they have said everything that they wanted to say to their loved ones before the end comes. My DH had unresolved issues with his dad that he is never going to be able solve and even 10years after his dad's death it still upsets him. Whereas I was extremely close to my dad but we spoke about everything and although I miss him terribly I have no regrets. Remember your dad living his life rather than at the end of it.

rebellove Thu 21-Apr-16 14:32:20

Thank you all for your advice. I feel much better about it all flowers

firsttimemama3 Wed 25-May-16 13:19:51

hello, first of all im so sorry for your loss. My papa died from PC and my god what an awful disease it is to witness.

I just wanted to say that he was not sedated and that he was still very similar to how you have describe your dad. He could not communicate or move in the last 48 hours before he passed.

There is a very supportive group on facebook 'families in support of pancreatic cancer' if you ever want to share your feelings there they are an incredibly supportive, loving amazing bunch of people!

Hugs and take care xx

Tanfastic Wed 25-May-16 13:25:32

My dad was also sedated in his last 48 hours and this was because he was in unbearable pain and he'd said to my mum that he didn't care what happened as long as he didn't die in pain - so my mum asked for the sedation.

I sat round his bed for 48 hours until he was gone and it was very peaceful to be honest. I was happy that my dad appeared to not be in any pain even though he could not communicate with us. It was just like he was in a very calm sleep. He just slipped away very peacefully. Certainly not like you see on the TV!

I'm very sorry for your loss.

flutterby77 Sat 04-Jun-16 22:48:35

My mum was sedated the morning she died as she became very anxious and agitated asking constantly what the time was and for someone to help her. She was given medazolan at about 9am and died that night at 7.45pm. It was a very rapidly progressing metastatic disease of the brain (leptomeningeal carcinoma) and the day before she'd been sat up in bed talking to us all. I have no doubt that the sedation was the best option for her, she was very peaceful that day and now knowing she didn't have even 24hrs left I wouldn't have wanted her to spend it distressed.

CharleyDavidson Sun 12-Jun-16 19:27:36

It was only very late on in his final days that Dad was sedated. He had been on the morphine pump for the week, but only started to show signs of agitation on the last day. He was unable to effectively communicate really for the last 2 weeks. Partly due to the amount of morphine he needed to keep him pain free, but even before that, due to the build up of toxins in his body. He had malignant bowel obstruction due to bladder cancer having spread massively and he was in pain from his body trying to clear out the bodily waste and not being able to as everything had been closed down by the tumours.

I feel sad that we were unable to communicate with him. Films/TV make it seem that there's a time you can say goodbye and you often just don't have that. We took music in and spoke to him and there were times that he seemed to be trying to respond, but a lot of the time he was just out of it. But not comatose.

RebelRogue Sun 12-Jun-16 20:35:38

My dad died without sedatives. His lungs just gave up and couldn't breathe anymore in the end. Besides the horrible noises his last words were " I can't breathe...help me...why aren't you helping me...save me" . So maybe they weren't entirely wrong that at least a small part of it it's for the relatives sake too.

LuckyBitches Tue 19-Jul-16 12:37:35

My brother was sedated when he died from Lymphoma. He was in a terrible state before that, having panic attacks as his heart was affected, thinking there was someone in the room etc. Once he was sedated everything became much more peaceful. Thank god for sedation.

I'm sorry for your loss OP - it's normal to feel somehow responsible when witnessing a death, I know I did.

flowers

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