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.

@WrenNatsworthy usually anything to do with liver, brain or lung x

When should someone be referred for palliative care? We knew a year before my dad’s death that treatment was not curative but he was never referred. I eventually made contact with the hospice myself and they came to see him but offered very little. He got care once a day. The council provided nothing. My mum and I provided his care. District nurses and GP practice provided pain relief. I am left with a lot of anger around his last few weeks. When should he have been referred?

I was a district nurse for many years and nursed many dying people at home.
Families were promised all sorts just to appease them and get them discharged from hospital. There were never enough hospice beds. The reality was, although it may have changed, that community services were often inadequate and fragmented with insufficient staff. Wait wait wait for everything. Reliance on family input round the clock was massive, they often didn't realise just how much so at the beginning.
I would never ever choose to die at home and it's interesting it wouldn't be your first choice.

How can people arrange not to die at home if there is no hospice place? What is the best plan. I don't want to die at home either

When he was discharged from hospital initially for a "check in/introductory visit" he should have been seen by a community nurse specialist, then he may have been discharged if he didn't have any palliative care needs, then he should have been referred by GP when he was beginning to struggle with symptoms (pain/sickness/breathlessness/lack of mobility/whatever). GP and DN should have also referred to fast track funding for carers for your dad as he was in last year of life, I'm really sorry this happened to you and I would be writing a formal complaint to
CCG when i had the energy, to try and prevent it happening to someone else x

Slightly off topic, but I loved your blunt answer and it made me chuckle. Thanks for everything you do and let's hope we are rid of the knobs soon and that hospice work is more valued.

From what I know, it hasn't changed on UK at least. The social care system is on its knees, fast track funding is fantastic but it's only as good as the care agencies that support it. District nursing service overnight again is brilliant but again, if they have 20 calls each for various things, despite prioritising someone is first and someone is last, so there's a wait. I think the Marie Curie overnight sitters is also an amazing service worth its weight in gold but as I understand it it doesn't cover the whole of the UK and they're again just volunteers. The Tory government does not have the two pillars of what makes a life at the forefront of their minds, that is birth or death. They literally do not care.

I would say keep in close contact with your hospice community nurse and they may be able to arrange a bed for you or at least have you on the list. It is rare we do not get people in who have been completely explicit about their wishes to us for End of Life care, they usually come 10-14 days (ish) their death. Does your hospice have any other hospices under its umbrella? It may be worth saying you would consider going to a different hospice, further away if you are totally adamant you don't want to die at home. X

Thank you so much OP what a great thread and what an amazing and thoughtful person you come across as .

It has made me a bit weepy thinking of a close relative's death . But in a good way as he was in a care home at the end and got great care from the staff there .

I am so sorry to hear of those personally experiencing( or for their loved ones ) inadequate care due to lack of funding .

I'll try and contact the hospice again, but I am not on their books at all, there is no room for me. I think I just have to assume that hospices are out of the equation altogether

@RimGreeper You can ask the GP to refer you to them, advance care planning is something that all community nurses should be doing with all palliative patients predicted to be in the last year of life. I don't know your diagnosis or prognosis or course, but most hospices now are not just limited to cancer only and should be more than happy to take you. There is no such thing as "haven't got room" (I hope they haven't said that!!) because to put it bluntly, due to the nature of the work, people tend to come off and on the books quite quickly. Hospices tend not to take self referrals but professionals should be able to refer you without too much difficulty. Hope this helps x

My mum has been told that she has shadows on her lung/s, kidney/s and liver that indicate cancer. She has declined any further investigations or treatment, which is of course her right, and plans to take her own life when the time comes.
She is making repeated involuntary mouth movements - could this mean it has spread to her brain? The consultant has sais she doesn't have parkinsons but referred her to a neurologist because she is having trouble with balance and mobility. I don't think it has occurred to her that it could be cancer in her brain, and I am frightened that they will tell her it is and this will be the thing that pushes her over the edge, as she had planned to take her own life if she had Parkinson's.
She is a strong believer in euthanasia. She will not speak to any professionals about it as she says she has friends. She is a very independent, stoic person. I think I am afraid she will leave it too late to be able to end her life herself or she will do it wrong and just damage herself. I don't know.
She says she may have years left and I only have Google to ask but it seems more likely months.
I may sound unemotional here, but I am devastated. I am her sole relative here, and I am autistic and live an hour away and don't drive, though I get the bus to see her. I dont know what my question is, I just don't know what to do. My support workers are trying to get social services to pay for transport for me to visit her.
I feel very alone with this and broken. So please forgive me for offloading here.
I think what you do is wonderful. Sadly I don't think my mum would agree to a hospice.
I do have one final question: are inpatients allowed to smoke in a hospice?

Are there secret measures to help people along?

Do you think anyone does this?

After watching someone die, I definitely think assisted dying should be legalised.

If someone dies in a way that’s unexpected whilst in palative care (say a sudden stroke or heart attack for example). Do you think they get some relief at the very end, the same love and memories as someone would that has died ‘peacefully’ would have?

I think you do an incredible job OP.

What an insensitive reply

I work in the fundraising team of my local hospice and have the privilege of seeing the skill, care and brilliance of our clinical team everyday.
the funding situation of our hospices is dire. My hospice receives 13% funding from the nhs. This means that of the 4 million it cost per year to keep our door open we receive 500k. Hospices provide so much to the local communities including training and education to other NHS services and care homes in pallative and end of life care. We do not have enough beds and have patients on waiting lists constantly. It is a disgrace that my job even exists. Millions of pounds every year raised by communities to keep what should be an intergral part of our NHS. My local community are amazing and the time and effort people put into raising funds is mind blowing. Hospices are closing or reducing services due to lack of funding.

@alwaysgotyou Thank you. I think it's a vital part of healthcare but IRL I don't think many agree.

Waves to @WrenNatsworthy

Is it normal for someone to cry just before their death if they are not conscious? My dad did exactly that 2 hours before he went and 4 years on it still bothers me.

@alwaysgotyou

Hi
Have you had observed any weirdly comforting or and weirdly :out there parnomal" experinces whilst doing this kind of field of nursing?

If you have?

has it changed your perspectives on the dying process or life or both?

What are the main Regrets people have before passing 🤔 on?

Do you find when someone who is younger patient has unexpected terminal illnes, has a different perspectives on the reality of what's happening to them?
than say the typical age group, elderly patirnts,
you normally expect to see at the kind of field of work of nursing then?

You're so much more than a nurse. You're an angel and I hope that you know just how invaluable you are. My DM was one of the lucky ones who got to a hospice and her final days were spent in comfort (as much as possible) and dignity. Thank you.

Thank you OP.

My father was sick for years, then deteriorated very badly within a few months. He was admitted to hospital, following a collapse, already yellow and weighing 7 stone, tests showed he had cancer (pancreatic).
He was discharged home to die, fitted with a syringe driver and that was that. Unconscious immediately. Would be shivering but also sweating profusely. We were never told to expect. He died two weeks later.

Is this normal?

Hi can you tell me how you support people who are palliative/ moving closer to EoL who don’t want to know prognosis, next steps, or who don’t want to talk about their illness? Thank you xx

My Dad was like this he had renal cell cancer with secondaries he made it very clear to everyone involved he would take his medication (fortunately he was in very little pain) but didn’t want to know anything else. I was really surprised that professionals didn’t seem to want to hear that and they would insist on trying to tell him stuff. When he was in hospital I had to get PALs and the Unit Director involved - in the end we got somewhere but it meant Mum and I had to be with him most of the day to intervene when someone thought they knew better! My Dad had a 60 year history of depression, he knew that if someone told him something he didn’t want to hear he would curl up and not live a little. By not knowing he felt he was able to live how he wanted to.

I also work in end of life care, and I agree with this.
I think it's awful how it 'can' be for some people at the end and I wish that the ones that really want it to be all over, could be helped.
Would be very difficult to establish that in reality though ethically, and guarantee that people weren't pressured

No, not really.
I'm not saying it never happens but if anyone is 'helped along' that's certainly not anything I've ever witnessed. If anything, I wish that they could be, but the balance of medications is strictly monitored and recorded, along with patients wellbeing.
Towards the end, if they have a syringe driver for medication, it has digital display. Noone would be able to just give a bit more, and medication is counted out and measured and double checked usually.
It would also be more than anyone's job is worth to assist this.
I used to think that People were likely 'helped on their way' by doctors, but I don't think this now I work in the field.

Well colour me happy with a hat trick!