Drugs given at the end of life

[emmaluggs]

My dad passed away about a year and half ago. He had undiagnosed lung cancer by the time we found out it was to far gone and complicated further by a bronchoscopy. He was in hospital for a week with increasing level of oxygen with the hope it was just a serious chest infection (he did have an infection). He was admitted to intensive care on cpap and the consultant was adamant due to the tests they had run it was cancer and ventilation would cause his life to end so this would not be an option of treatment. This is all fine and makes sense. We were called in as he was was getting agitated and taking his mask off etc. The DR basically said that he was dying, if we left him he could go for about another 12 hours, or we could give agree to give him some drugs to relax his system and it would take moments we decided on the latter, but what I struggle with is did they help him die? Is that how it works? I think I’m struggling with the fact if he had more time would it have been different? I know it wouldn’t but it feels like we all made a decision. I don’t even understand my own question.

You did the right thing, I'm sure of that. Your dad needed sedation if he was fighting the oxygen and the doctor said he was close to passing.

My father passed in similar circumstances 14 months ago, but on a normal ward. I had to fight to get him a nebuliser and morphine. I still feel I didn't fight hard enough to get him comfortable.

Your dads doctor seems as though he was kind. I think he helped your dad to pass and that is a good thing.

Whatever happened you did what was needed at the time, I say this as someone who still questions her own decisions but would be kind to others...you did the right thing

So sorry to hear about your dad. I lost mine last October to lung cancer and remember the agitation toward the end. The drugs are given to reduce agitation and anxiety so that a patient is less distressed. The side effects of the meds will often depress breathing, but that's not the doctor's intention. The number one priority is symptom control. But like they said to you, they know that the side effects may/will shorten life. Its called the 'doctrine of double effect' where a drug is very vaildly given for symptom control but it is known it may shorten life. They didn't directly do it to help him die. I am so sorry that you've been thinking and worrying about this for so long. You made the only decison you could with the information at the time and the right decision. We made the same one too. Please don't beat yourself up about it. You put easing your dad's suffering as number 1 in an awful situation with an inevitable outcome. He will have been so proud of you all I'm sure. I know it is so easy to start thinking 'what if' and 'if only we had more time' but it really sounds like it wouldn't have changed the outcome and would have prolonged his suffering. Big hugs x

I've been close to the end of life pathway for two very close relatives with cancers. One was given heavy morphine drugs at the end in an hospice and slipped into relaxed sedation and passed away. The other was in a nursing home and they couldn't offer the same level of drugs. That's the one I struggle with. The home did everything they could but it was not as peaceful

My DH passed last week from lung cancer at home. Tbh the drugs in the syringe driver where miracle drugs, before they got the mix right DH was so anxious and agitated and crying out, they made him (and us ) much much more calm.

Thank you all for your replies and sharing your experiences. It has helped. Just playing on my mind at the moment, I think it’s seeing all the people with cpap/oxygen masks due to covid, it’s just constant flashbacks, and hearing people coming back from the brink it just makes you stop and think.

Ultimately I think it just comes down to missing him x

My dad died late last year at home - he was really agitated, anxious and miserable, was given the syringe driver of drugs by the amazing district nurses. We knew he was going to die and in our heads didn't want him to be spaced out and not able to hear us because he was too "drugged up" but as the nurse told us, it wasn't about us, it was about him. So he was at peace when he passed which actually (although I'm crying writing this) was what he would have wanted.

I wish they had given me that option when my father died. You did the right thing. They ventilated him, hooked him up to 12 machines after they had cut him open from top to bottom and couldn't closed him up because he bled out. . I'd have been much happier to say goodbye to his body whilst it was still vaguely whole. As it was I couldn't bear to think of it and didn't even get to hold his hand, I will regret it forever.

The same thing happened to me when my DH died of bowel cancer . The end I expecting was a few days of him sleeping a lot and on morphine to help reduce pain . I wasn't expecting the distress of breathing difficulties , my DH had fluid on his lungs . We were told that DH could go on for a while longer but an increased dosage of morphine would help him relax and ease his distress. We opted for that and he died very quickly after they increased the dose . I too was traumatised by that fact that I had helped him to die more quickly , so much so that I requested a meeting with his consultant . It was very helpful and he confirmed that it had been noted hours before he died that he was showing symptoms of death approaching . We hadn't been told that at the time . He also confirmed that DH only got a small increase in morphine and it may have caused him to die a small amount of time sooner but he would have died that day anyway and it would have been more distressing . I found the meeting quite therapeutic . Maybe such a meeting would be beneficial to you . AFAIK It's a pretty standard request that most hospitals are happy to accommodate

@notapizzaeater (flowers)

I'm so sad to here this but you did the right thing. End of life drugs like midazalam and morphine are there to help settle an agitated patient and help control any pain. If he hadn't had them he may have been uncomfortable for his last few hours. It would have been much harder to see him pass away in pain and you may you may now wish they had given him something to keep him comfortable if they hadn't. Hopefully he had a peaceful passing as much as possible. Hope you are ok too xx

I’ve been at the bedside of 2 people who have died of lung cancer. The first was in a hospital with a syringe driver - peaceful. The second was at home during the November lockdown. The district nurses did their best with injections of drugs, but these wore off and the syringe driver was too late in arriving. The end was so distressing for all involved. You absolutely did the right thing in allowing your dad the medication he needed. Be kind to yourself

OP I’m sorry for your loss. The drugs essentially manage the symptoms of dying if you see what I mean. People in the terminal hours and days of their life can be very distressed and in lots of pain. The systems of the body also slow down and people can be very nauseated and sick and there are also changes to breathing and the secretions in the airways. The drugs manage these to make people comfortable and ease the distress to both them and their families. You did the right thing, sometimes the best medicine is to stop treating, make people comfortable and surround them with love and care to give them a good death. X

I think the doctors do help them on their way a little, my dad had a syringe driver too. He had pancreatic cancer and it had spread everywhere, including his brain and there was no hope. The specialist said his tolerance to pain was the highest he had ever seen, he passed away within two weeks of diagnosis. The day he passed the syringe driver was opened by a Macmillan nurse and altered (whatever it is they do). Dad was at home with us, so it was in a locked unit. I believe that they chose to help him die peacefully.

I’m sorry for your loss- you made the right choice.

My mum had this. She passed away of cancer back in June.
She was struggling and choking on her own mucus and was starting to get a bit distressed. They called the on call doctors who came out and gave her something to relax her. They warned that it may speed things up, she passed less than an hour later. It was such a blessing. She was suffering so much at the end.
You definitely did the right thing. Watching my mum suffer like she did was horrific 😢😢😢

I work at a care home and when our lovely residents reach end of life our main aim is for a stress free and dignified death . The GP prescribes meds that we can give if the resident is agitated,in pain or distressed . As a nurse I always put myself in the residents position and imagine what I would want . X

Understand how you feel OP, my mum was on an end of life treatment plan, gradually there was less intervention to preserve life and more to make her calm.
It caused friction within the family but ultimately it was the right thing to do, she was suffering and it was selfish to try an keep her alive for just a few hours/days longer.

4 years later and i miss her even more than i did back then, its shit.

My DW passed away 2/7/20 at home supported by hospice at home nurses. She was only at home for two days, discharged from hospital with the end of life drugs. Unfortunately she deteriorated very quickly and it was difficult for the visiting nurses to control her symptoms and I am.left wishing I had pushed for them to give her higher doses of morphine and midazolam as she did get agitated and was calling out. But I believe they have to increase dosage in careful increments and in the end she did pass peacefully and I was so grateful for the nurses helping us. You did the right thing OP.