I'm a palliative care nurse

[alwaysgotyou]

I'm a specialist palliative care nurse with over 15 years experience in hospice inpatient units and in the community, working for charities and within the NHS.
Ask me anything.
NC for this, but been on MN since 2011.

I know. It feels like a covered over scandal. Most of my job is talking about hospice fubdibg in the community and it never fails to shock, suprise,anger people. Trouble is that as independent hospices we are all lone voices. I know there is hospice uk but to really make the government stand up and take notice we need a national voice.

@alwaysgotyou

Just curious 🤔 about your thoughts insights on hallucinations aspects or stage of dying process then?

Do you think it could be for example dying person having a connection with deceased loved ones in a meditative state of drifting in and out of consciousness ?

Do you think dying person is or could be having a lucid dream state which possibly they are perceiving they are connecting with dead loved ones,
but in reality it's just there imaginations ?

Or
Do you think 🤔 the potent powerfully drugs for pain relief could potentially create this hallucinations effect for dying patients?

Do you think it's possibly a combination of all the ubove factors or just one or two factors then?

@cerisepanther73 The accounts I have heard have all been of dying people who have reported that the dead loved one has visited them in the room, just as living people do.

Most but unfortunately and very sadly not all. Some (fortunately very few) no matter what we do, we cannot take the pain and distress away from the patient or sedate them enough, or their tumour bursts and they bleed or they seize at the end or life or their airway occludes, or one of multiple things means they don't have a settled death, although they are few and far between, we as nurses feel the deaths hard and our hearts break for the relatives having to watch their loved ones go through it.

Some drugs definitely cause increased hallucinations. I think some people have hallucinations but are not at all troubled by them, infact find them comforting, especially as if you're barring family members. It is only if they're frightening (spiders crawling over you, falling into a pit of snakes, being in a Ww2 battlefield, seeing parents as zombies are all ones I've heard before) then we will treat with medications to try and relieve, we don't want anyone to feel anxious or frightened if we can help it. X

@cerisepanther73 you should read when breath becomes air, I think you'd really enjoy it x

@Dontcallmescarface yes, so eyes can leak and look like tears, so we often give eye care with a bit of warm water and cotton pads to keep the eyes feeling fresh at the same time we do mouth care and encourage the families to do this too. X

Thank you for replying. My FIL is quite a selfish person, and he's not good at putting himself in other people's shoes. He has been in denial about MILs condition since it began, and is far more focused on how he feels about anything than about what's best for her. You are right: she can't do anything that gives her pleasure - I don't even think these words / concepts have any meaning for her now, she just exists. But FIL carries on blithely acting as if she's going to somehow get better. It's very distressing for DH and his sister.

He got very angry with me the one time I tried to speak to him about death. I just asked what kind of funeral he would want to have, as I knew he'd been to arrange it recently. He was very affronted that I brought it up or wanted to talk about it. TBH I was mostly making conversation, as there'd just been an advert for a funeral company on tv, and in my family death is not a taboo subject. I was very taken aback by his anger and inability to talk calmly about something that we all will face eventually. I think we, as a society, have to get far better at talking about death.

I completely agree that society has to talk about death far more. Through history we’ve been far better at it. My husband works in intensive care and there will be families who just cannot accept that medicine doesn’t work in some cases. It’s like it’s so taboo it almost can’t happen. If we could talk about death as a society then we’d probably deal with it a bit better.

I have asked my husband this one, and his answer was very boring, but have you ever seen anything that leads you to believe there’s life after death? Any sign that someone is going towards the bright light we all hear of?

@alwaysgotyou @IgoogledYOLO

Thank you both for your replies. I had always hoped this was the case and I will tell my dad - I know he will be hugely comforted with this knowledge. I'm grateful to you both for replying.

Thank you OP and for what you do every day as I most certainly wouldn’t be able to do it 💐👏🏻👏🏻

@alwaysgotyou thank you for all you do.

My dad had the god-awful mesothelioma and had two hospice admissions - one for pain management and then for EOL.

He was reluctant to go in for pain management but it was honestly the best thing and tbh the only time his pain was actually managed. The community palliative team and the pain specialist at the hospital just used to give sympathetic looks and tell him to up the morphine. The hospice taught him how to take the morphine properly (in anticipation rather than reactively if I recall correctly) and we were just flabbergasted that this basic information had never been shared with him.

I do remember one nurse in there asking the “nitty gritty” questions to dad about how he wanted the end to be and it was like a weight being lifted off our shoulders. Putting it all out in the open made such a difference. Yes we all cried but it felt empowering for dad to have some control. The advice the nurses gave me about talking to my small children about grandad dying was also spot on.

Anyway, I don’t think I have a question for you but did just want to highlight how bloody amazing hospices are. Things had got quite overwhelming with dad at home and the hospice support was like a warm hug for all of us, especially him, at a time when we needed it the most.

Thank you, thank you, thank you.

A lot of elderly people can have hallucinations, but it doesnt mean that end of life is imminent necessarily.

@alwaysgotyou

Just wondering with your field of work are people who are drawn to your field of work tend to be also of spiritual minded slant

Or

Is it a case of maybe someone totally cynical skeptic about spiritual psychic stuff doing your type of field of nursing,

then after a while , thinking maybe there is more to life than what i orginally thought,
maybe even their skeptic mindset being challenged and being a bit more open minded about spiritual or paranormal things aspects in life too?🤔

Have you or your colleagues experinced this at all?

I think probably a mixture of both.
Some are religious, some have no religion but are spiritual and some have become more spiritual through working in palliative medicine I would say.

This was a question I asked myself while caring for my partner with final stage brain cancer. He was terrified and in denial. the nurses kept asking if he'd accepted the fact we was going to die soon, yet.

I gave it a lot of thought and came to the decision that well, why shld he have to face it? I know he knew, but I wasn't going to shove the fact down his throat, and talked about things we would do when he got out of hospital.
He died a week later. Death will come whether people accept it or not, and I can't really see how frightening them to death by taking all hope away and making their remaining time here anxious is in their benefit.

#@alwaysgotyou

As a society in uk and other countries in western world in general ,

How can society educate itself to be a bit more 🤔 open minded,
less fearful of dying, and also be more insightful about the realities of death and dying process etc,

I think in some or lot of aspects certain other cultures of the world have a better grasps ways of dealing with the fact all of us all being mortal ect..

Read books, talk about it and don't shield our children from it. Make death and dying parts of normal conversations.
If you think how in Irish culture they have open caskets when someone dies and everyone is there and no one bats an eye lid, because it's all they've know from babes in arms. A really lovely celebration of life.

Firstly thank you for everything you do, i don’t know how you do it but thank you. I was 13 when my mum was put into a hospice while terminal with lung cancer and had days left. A few questions were never answered to me due to my age. I was there everyday with her, i had been caring for her. She gave me this long speech about my future then never spoke again, do you think she knew that would be it? I was home at night and she hallucinated about her mum, she was sedated and never woke up, could she still hear me in the last two days while sedated? and when i spoke to her minutes before she passed, tears ran down her face, was it because she could hear me saying goodbye? the nurses really did give her dignity

Op
If you think how in Irish culture they have open caskets when someone dies and everyone is there and no one bats an eye lid, because it's all they've know from babes in arms. A really lovely celebration of life

I couldn't think of anything worse. Our family does extremely low key funerals. So low key we don't even have them. No service, no spreading of ashes or anything. It doesn't mean that we are uncomfortable talking about death at all or that we are afraid to show our emotions. My siblings, Mums, my kids and my wills all ask for direct to crem funerals. None of us are spiritual or religious. My Dad died a few years ago and when I think of him I don't think of his death or funeral (as there wasn't one) I think of when he was alive and I think that's helped by the fact we all didn't have a funeral. I understand how funerals are important to other people though. My husband's family are Catholics and I appreciate that they do things differently.

I meant for them, it's lovely for them to honour their loved ones live. In their culture, death is very open so open in fact, it is second nature that that's the way things are done. I was not saying that that's the way it HAS to be done, death and dying and indeed what happens afterwards is a very personal choice, I was just trying to illustrate the fact that generally speaking in British culture we don't talk about death and dying, it remains a taboo subject.

My thoughts would be that yes, she held on to have that talk to you then "let go" knowing that she'd done all she can do.
I suspect she very very much did not want to leave you and could hear you till the very end.

I am so sad to read this. Were you able to turn him yourself? How lucky was he to have you there and what a difference you made in those 10 days.

Op I can only hope I and my children (not that I'll be around for that) have someone as caring and competent as you at the end.

How do you feel about the Liverpool pathway?

Not really a question but in the olden days (!) it was accepted that people were eased in to death. Now it is not possible because of rules and regulations yet repeated governments have failed to provide a well funded service to care for the dying as needed and current practice seems to be to keep alive as long as possible. I just pray that assisted dying is passed soon so that people can die when they want and not have to suffer poor quality, disjointed care where their relatives are frantically trying to understand and negotiate the system at an already miserable time of their life. A friend's mother is 90, partially sighted, has dementia: she had a stroke and got pneumonia in hospital. I could not believe that she was given antibiotics and not just allowed to pass away; death is natural and I strongly believe that the money taken to care for such could be better used elsewhere. Sorry, rather a rant and many may disagree.