Palliative care nurses, do you lie?

[IsitTruewhatTheysay]

When you miss your loved one die, race to the hospital and get taken into a little room. The palliative care nurse tells you it was a very peaceful death, your relative went into a very deep relaxing sleep when administered second medication after I had left. They slept deeply for acouple of hours, would not have been able to respond at that point in any way, and vitals dropped all of a sudden, and I was there when it counted, when the person was still responding.

I had been at the hospital for 8-9 hours with my relative who had the death rattle. The nurse told me she didn't think it was imminent, and I could go home for some rest. She said my parent was becoming agitated, so the second medication was on it's way from the hospital pharmacy and would be there quickly as we left.

Are they lying to make you feel better?

This information was given without me asking, and this lady was the most amazing lovely nurse I had ever met; you could not ask for anybody better to be with your relative outside of family. She apologised for saying it was not imminent, and that he deteriorated quickly with the second medication all of a sudden.

I didn't ask any questions as wanted to race to my relative as soon as possible, despite her telling me of the death, it was the way I reacted. I now wish I had asked more questions afterwards.

I’m a DN. we don’t lie. That death ‘rattle’ is often more distressing for the family as it sounds distressing but often it makes no difference to the patients comfort

My close family member passed away 6 months ago. She was on palliative care and was unresponsive for a day or two before her passing. She knew we were there as she would try and squeeze our hands . On my birthday I had been out and went to see her in the evening (she was at home) and got there at 5pm at 5:10pm holding my hand , she passed peacefully . It was very peaceful, she just took her last breath and went .
So sorry for your loss x

Your post has just made me cry. Pretty much exactly the same happened with my mum. I’d been sat with her for hours and, around 2am, I lay down on the floor just to close my eyes for a short while. I sat bolt upright an hour later and realised immediately that I couldn’t hear her breathing. She had also been given medication to ease her agitation.

So many people have said to me that people often wait until relatives have left the room, or fallen asleep, to then pass away. I still feel horribly guilty that I wasn’t holding her hand at the end, but I do know it must have been peaceful due to her relaxed state after the medication had been given.

OP - I am very sorry for your loss and I don’t believe palliative care nurses would lie. I hope you can take comfort from being with them when they were aware of your presence.

Please do not feel guilty about not being there with your Dad right at the end. Even Dame Cicely Saunders, who founded the hospice movement, missed the death of her husband when she slipped out of the room for a moment.

I do not want to cause you any further distress but I read a book on near death experiences recent. It was written by a a doctor who went on to study psychology and spent many years collecting evidence on NDEs.

I found it quite reassuring in fact and apparently many people who have had NDEs have said that they feel far less afraid of dying than they had before. The experiences described are positive and some very beautiful and you may find some comfort.

If you think it might help you feel less negative about your dad's final moments it's called After by Dr Bruce Grayson

I agree with other posters that end of life medication really is transformative, and as one doctor said to me no one needs to die in pain with the medicines we have at our disposal.

Also agree people often die after relatives have gone, perhaps as the stimulation of touch and talk has gone they can slip more deeply into rest, or as others say perhaps they don't want to upset you by meaning you watch them die. it's really common.

I have only seen one elderly relative die and it was so peaceful, just a gentle passing, almost beautiful although heartbreaking.

I'm so sorry for your loss, remember the good aspects, don't spend a moment more beating yourself up or second guessing yourself X it takes time to come to terms with what happened so go easy on yourself x

My husband and I have had 5 close relatives die who were on end of life care in our adulthood and of those 3 of them died when family left the bedside or had just visited. My grandmother died when a nurse was with her but the family and I had stayed all night before and were just changing over. I do think it’s more ‘peaceful’ in the room when family have left sometimes so they pass. The 2 deaths when we were there were also peaceful but more at a time when the room was quieter and people were not talking. All of the deaths I have known and heard of have been peaceful in the final hours. The days preceding were not always as peaceful though and this is probably what your friend meant. I have never known of the few hours before a medicated death to not be peaceful in my experience though xxx

No they don’t lie, in my work with dying patients it’s really common for patients to die when their relatives go home. I think some people prefer to die on their own.

Sorry about your grandma, and thank you for your lovely reply.
My dad couldn't respond which I think made it worse, the time I had with him was where he couldn't talk or open eyes, and then the death rattle, and it is the worst sound in the world isn't it. Although the nurse reassured me that they don't feel discomfort, it is more distressing for those seeing it. Because he had been this way all night, they thought he had up to a nother day. I just talked to him for hours, and hoped I made a difference, he moved his feet, and arm so i guess this was some sort of a response. His hands were so swollen he couldn't feel those, so I held his arm and stroked his cheek and head, he couldn't talk or open his eyes. This was the part that really made things difficult, he was locked in and didn't get the chance to talk back.

I spoke for us both to try and tell him I knew he loves us, just as we loved him, and that we all know and our hearts would be connected forever, we would be strong for each other, that every time i thought about him, he would be by my side, as well as also being reunited with the loved ones that passed before and they were waiting for him, who he missed terribly. I told him we would all be okay, that I couldn't ask for a better dad, it was okay to let go when he was ready, to take all of that love with him, he wasn't alone and we were with him, and taking him on this journey to a beautiful place where there are no worries or troubles, a peaceful beautiful place full of warmth and love. I spoke like this for a good proportion of 8-9 hours so I do think he was ready for me to leave!

Thanks again, it sounds like your grandma passed away peacefully knowing how loved she was. 🫶💐

I was warned in advance my relative might die when I went out of the room, as its so common. In fact I was there and it was v peaceful

I care for people at the end of life. Last week I was looking after a lady with a gorgeous family who spent every waking moment by her side. They would leave to get a few hours sleep at night. Just before they left for the night the lady had morphine for any pain and midazolam for any agitation. She then slept through the night very deeply.
as others have said, even those (and maybe especially those) of us who are around death often, it is importance for us not to leave a person to be on their own in their final moments. Myself and a colleague sat with the lady a all night, around 4am breathing changed slightly but again no distress, I called the family, but the lady passed before they arrived, I was by her side, there was no agitation, nothing to indicate any pain

I’m sorry sorry for how you are feeling, but echoing others, it does often seem the case that it is when the relatives leave that the person finally passes x

Thank you to all you lovely ladies for responding, and sharing your experiences; I have read each and every one of them. You have made me think a bit differently about things.

I'm starting to think I may have a form of complicated grief, maybe due to the circumstances around my dad's death. Although I do think I am now smiling at things he would say or do, and trying to keep his memories alive. On other days I bawl my eyes out, not anywhere near how I did in the early days, but upset nevertheless. I hear his voice telling me to enjoy my life, the world seems different and abit pointless now though. I am trying, I just miss him so much; I wasn't supposed to lose him in my 30s. He was the one person in the world who got me, he showed me what it is to love, we were similar, and it is like losing my best friend of 30 odd years. I have dm, who I love, but we aren't as close. Despite this I am waiting to do it all again and cannot shake that thought; she is 71.

It is 22/23 months since dad died.

My mum died a few months ago. I wasn’t with her but had been there the day before with my teenage son. She wasn’t conscious by then. I don’t think she was aware we were there and I’m doubtful she could hear us as she was extremely deaf. I’d been there a couple of days earlier (it was a long way from home and I had one child doing a levels and the other doing GCSE’s) and she was angry with me as I couldn’t do as she wanted (she wanted me to help her get up and dressed), I was told she was delirious at that stage, she certainly didn’t understand the extent of her needs in those last 18 months or so or the impact on me. It was awful. She probably died thinking I didn’t care, which wasn’t true but her last few months and years were really miserable for her and for me. I do think it was most likely peaceful at the very end as she was being medicated.

My family missed my grandmother's death, only by a couple of hours. I believe it was peaceful as we were told, because she was almost entirely unconscious at the end. She wasn't in palliative care as such but in her nineties with dementia, we knew that her final illness would be her last but only with a day or two's notice.

Me and some of my other family members flew back home, so all of our close family had the chance to visit her on her final day. We went and sat with her, sang some of her favourite old songs while she was semi-conscious, spoke to her and held her hand. We left in the evening at the end of visiting time and got the phone call a couple of hours later that she'd passed. I think, as many have said, people hang on for certain things even if it's subconscious. In my grandma's case, she had managed to hold on until everyone had arrived and said their goodbyes before passing in the company of kind and compassionate nurses. I can imagine it might be easier that way, with someone caring but somehow separate, much like how talking about difficult subjects can be easier with a therapist than with family or friends. We went back to the hospital as soon as we got the call to hold her hand one last time and say our very last goodbyes, as well as to thank the staff. My grandma was a much-loved person, and it sounds the same for your dad.

I hope you find people's answers and experiences helpful, and I hope you continue to find ways to honour your dad and grieve at a pace that suits you. You sound like you have a wonderful heart, and the questions and worries are the double-edge of the sword of how much you love him. That love is what matters; you did all you could.

I think this may be one of the most comforting replies I've ever read on Mumsnet. Thank you for taking the time to do it and for everything you do at work.

Would any of the lovely people on here who work with dying patients be prepared to try and explain what might have happened when my DM died? I don't want to derail and risk causing distress but equally it could also be helpful to any others who maybe misconstrued what they saw. Happy to do it via Direct Message if the OP thinks she may find it upsetting.

My dad died a couple of months ago. He was receiving palliative care and I was with him when he died.

He could understand us almost till the end. He became a bit unsettled (very short of breath) so he wanted more medication. That settled him and he fell asleep. Died in his sleep. It was very peaceful.

So it can be peaceful.

I'm sorry for your loss

I’m a palliative care nurse but used to work in ED. Patients in ED don’t always die peacefully I don’t ever lie and if I was asked I would say they did suffer but are now at peace I genuinely believe this it’s the only way I can keep doing my job.
Now I do palliative care in peoples homes. My colleagues and I aim for a peaceful death and go above and beyond to try and ensure this happens. Patients may have times when they are unsettled/in pain and we will administer appropriate medication and I will always explain that I am concerned they are unsettled/in pain but I’m going to try and address it. I’ve seen numerous people die and the overwhelming majority die peacefully I couldn’t keep doing the job if they didn’t. I don’t think the nurse lied to you it’s not really what we do.
Patients do often die when a loved one leaves the room or some wait for a loved one to arrive if they are coming from far away. Others just drift away surrounded by their loved ones. You cannot generalise.
Death of someone we love is always very painful and there are so many emotions including relief that someone has finally died after perhaps struggling with a difficult illness but of course we sometimes feel guilty for feeling relived.
It is a privilege to look after someone who’s dying and to also care for their families at the worst time in their lives. We are literally able to reach out a physical and metaphorical hand and say I don’t know you but I really care about you and your family/friends and more than anything I want you to die peacefully and I will suppprt you and your family/friends while you die.

So sorry for your loss, not at all. 💐
Death is such a mystery, and we just have to think our loved ones are at peace.

Okay thank you OP. Content warning for distress then ⚠️

So to any wonderful hospice folks on here...
DM went through all the stages you describe, long periods of unconsciousness, stopped eating and drinking etc. Then the lovely nurse advised it would probably happen that night. I woke up at 4am and heard the rattle... And then she seemed to wake and suffocate 😔 It didn't last long maybe a minute. Her eyes were wide open and watering, although she wasn't looking at us (I think she was blind by the point). We all tortured ourselves for a long time about whether we could have done anything differently.

My papa died 11 months ago in palliative care. She was in and out of conscious. Spoke to my mum a little bit held her hand and fell asleep. He took a few deep breaths and then he passed peacefully. A few things happened prior to it that I won’t go into detail with so they knew it was going to be within a few hours. She was very lucky to have that last conversation with him xx

I genuinely think that by that stage in the dying process I’m calling that because that is what it is she wouldn’t have known it suffered. The “rattle” you talk about is distressing for family and friends and HCPs but it felt that it’s not distressing to the person themselves by that time they are usually unresponsive and know/are aware/feel nothing.
I really don’t think you could have done anything differently please be rest assured of that. Dying is not a pretty process (completely different to how it’s portrayed in movies etc) but the important thing for you and your mum is that you were with her all the time and I know from supporting hundreds of people who are dying and their families and having sat with my own mum that this is the most important thing you can do for the person who is dying and you yourself.
We “don’t get over” the death of someone we love hopefully over time we learn to live with it the sadness takes a back seat and different often happier memories fill our thought. Death of those we loved changes us for ever but we grieve because we love and our lives would not have been the same without that person.

Death when expected and medicated is usually peaceful. ❤️

Ultimately, even the most experienced and skilled medic in the world can't predict exactly when someone will die, so they do encourage loved ones not to make themselves unwell camping out at the bedside for days on end which I think is positive. It's not like they exactly know when the end will arrive to deceive people so they're not present. With my mum, when they removed life support I stayed with her pretty much around the clock for 2-3 days, and then on the third day popped home for a shower and a quick nap planning to go back again. When I was on my way back, I got the call saying she'd died.

If it's been nearly two years OP and this issue is still plaguing you, I truly recommend bereavement counselling with someone you trust and who knows their stuff. I only had six sessions and it was an enormous help and comfort to have that space to talk about her and how I felt about losing her so honestly. It was brilliant. I don't mean that you shouldn't still be grieving of course, it will be hard for a while to come. Just that if this specific thing is still with you all the time and it's driving you crazy not to be able to get an answer maybe talking it through with someone will help you to understand what's underneath that, and give you space to reflect and process. It can't hurt, at least.

So sorry for your loss. It's been fifteen years here and it gets so, so much easier with time. I still miss her and dream about her every week and if I have a drink or two I can end up crying just aching for her. But day to day, I'm fine. I'm okay. I wish it hadn't happened but I accept that it did. And I love her, so, so much.

Just because someone dies that doesn't mean your relationship dies. It continues as long as one person is still living. So your relationship with your dad is still very much alive, and it will morph over the years. My mum died when I was barely out of my teens and the way I think about and love and relate to her is so different now as a married mother compared to when she was here! It's a beautiful thing.

The medics that cared for my mum when she was dying made such a massive difference to me, and my experience. I saw the way they spoke to her directly when they removed her life support. I still remember seeing them say to her so gently and calmly 'we're going to remove this tube now Linda so you'll be more comfortable' even though she was unconscious (to our knowledge). The way they held her head as they removed the extra pillows and gently laid her down. The way they held her hand while positioning her, and stroked her hair. It was the most beautiful, heartbreaking, peaceful, human thing. I felt for a moment like they knew her and respected her and the gratitude I felt for that was immense. On the year anniversary I took a card and gifts in to just acknowledge what thay had done for her, and for me. You guys are absolute angels. I've had some really appalling experiences from the NHS and some incredible ones and the end of life care medical staff seem to truly be the creme de la creme of them all! Thank you for everything you do. It was probably the difference for me between walking away distraught full of regret and anger and misplaced vengeance vs walking away being broken and missing her but knowing she'd died peacefully around humans that cared for and respected her. The best death anyone could have.

I’m so pleased to read your story and the kindness shown to you and your mum. We really do care about our patients and their families. I often verify deaths, wash patients and put them into clothes of families choosing it’s the last thing we can do for them it’s important for me to do this. Afterwards I sit and talk to families about their loved one I’m often shown photos etc.and families talk about their lives, my colleagues and I often attend funerals of those we care for families are pleased we attend and it’s our final way to say goodbye.
Most HCPs understand how hard it is when someone dies you are starting on journey of grieving for the person who you loved I believe and I’m sure my colleagues would say the same thing that the journey will be less hard if you believe that person who you loved was well cared for whilst they were dying and died peacefully. You will also find that journey less hard if you feel you were supported and cared for. A wise palliative care nurse once said to me “we only get one chance to get it right” I hope that in the vast majority of cases we succeed.