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.

You are very welcome. I personally think the more people can talk about death and dying and open up the conversation, the less taboo it will become and people will hopefully be able to have conversations with their family members. Yes, different cultures do things very differently. Just recently we have had a lady from the Philippines with us, her mother and sister stayed by her side and aside from medications did EVERYTHING for her and were intensely private individuals, also felt that they didn't really want you there. X

We never dodge the subject, why would we?
They know they're dying, we know they're dying. It is valuable to let them say what they want to say, they may not have had an opportunity to talk about their death or the dying process before, many people (especially older people) don't want to upset or burden their families. I usually say, what makes you feel that way today? Are you feeling differently? And am very patient led, we never push them and just little by little just explore with them, we also have a spiritual lead and counsellors if needed.

Are there enough hospice beds for those who wish them? My dad could not get into the hospice as there were 11 people waiting, and only 8 beds available which were all full. As a result he ended up in a care of the elderly ward. We took it in turns to stay all night sleeping on the chair or even the floor as there was nowhere near enough staff to tend to him. He needed turned very frequently and spoon fed/ helped to drink. He also wanted the commode in the first few days. He was in that ward for 10 days until he passed.

do you believe in an afterlife?

There's absolutely not enough beds. There's lots of work done in the community which is great in some respects, however when people are asked where they want to die and they say "home" (they such the pjs hospice I used to work in saying the beds weren't used and people wanted to die at home and not in hospice!) I don't think people appreciate that they may be waiting between 2-6 hours for pain relief (depending on how busy the out if hours district nursing service is!) and also if their symptoms are complex ( hallucinations, terrible sickness or pain) they (or their families!) may not be able to cope at home or what happens if there's a crisis at home? Then all of a sudden there's no bed!
I think there definitely needs to be more beds, and the link between community and inpatient unit should be stronger, people shouldn't be frightened or think that's where you go to die, but know hospice is somewhere you can come and have your symptoms managed or just be looked after a bit for a couple of weeks (respite) it's a lovely introduction to hospice I think x

I am not religious, but I am spiritual and I believe that individuals go where they believe they will go. Whether that's heaven, reincarnation into a swan, whatever they believe in, I believe in it for them too. X

Do you still remember the first patient you had?

Have you ever had to care for someone you knew?

(Obviously not asking for details)

Thank you for the job you do.

I think what you do is amazing and I thank you for that.

Are there any campaigns for more hospice provision? I don't think we have enough, especially with people living so long now. Too many die in hospitals when a hospice place is needed, I was looking for that for three weeks before I got dad into one.

I do, it was in the community and she had heart failure. She was hilarious, feisty, ridiculously independent and always had a pen for me to write my notes and a cup of tea ready when I visited her at home. I felt exceptionally privileged to give her end of life care after caring for her for two years in the community.

I have looked after friend's family members, when they have died but have worked in several very small communities so that is par for the course.

I haven't heard of any.
I think the problem (if that's the right word) is that the majority of hospices are run by charities. Some charities are bigger than others Marie Curie for example have a few hospices, as does Sue Ryder but there are many many independent hospices too. The cost to keep a hospice running is hundreds of thousands a day and NHS give very very small amounts of funding indeed somewhere between 20-30% I believe.

I have a follow up to your answer to @EmmaEmerald, if that's okay?

Why is the nhs funding for hospice care so low? Is there a reason?

And thank you for answering me before.

You're very welcome.
Because the Tory Government are knobs I think.
More info for you here: www.hospiceuk.org/latest-from-hospice-uk/hospice-funding-falls-short-ps47m

I'm on long term palliative care. Thank you for what you do.
I am going to tell my hospice nurses I'd prefer to die there now, as I don't want it to be horrific for my husband and son. I had thought home but this post has changed my mind. I'm blessed to live in a city with an amazing hospice.

Hi @TwigTheWonderKid I think I'm going to start a memory box very soon.

@WrenNatsworthy hello! I would go and have a look around your hospice, see the rooms, the outside space (if that's important to you) the quiet spaces, the spaces you can spend as a family, if they have space where your family can stay (we have a family wing, two bedrooms with en suites where family members can stay if they don't want to stay in the room with their loved one or want a nap in the day) go and meet the nurses/HCAs, ask all the questions you want, see if you can have some complementary therapy! I can't tell you the amount of people I've tempted through our doors with a massage and reflexology 🥰) and see what you think, if you don't get good vibes, home may still be an option for your end of life care but I would recommend looking into seeing if you can have a nurse with you, especially for nights (Marie Curie provide RNs) if pain has been a problem during the course of your illness x

How do you know they are hallucinating ? There is simple 100% no way you know for certain that they cant see there lost loved ones

@PeopleAreWeird Hallucinating is very obvious to the experienced, trained eye. Patients can be frightened or distressed by what they are seeing, definitely not comforted in any way. Some people are able to describe that they know it's a hallucination and not feel, so they are not bothered but these are few and far between in my experience. Hallucinating and agitation are closely linked in end of life in some types of cancer.

This is so interesting. I'm under palliative care - 20 months into a 18-24 month prognosis - and recently spent a few weeks in our local hospice. It was excellent though I found it harder than I expected.

I thought I definitely wanted to die at home
but now think maybe the hospice is the best place but it's a small one, doesn't always have beds available, and what I want most is to cuddle my child/husband and they don't have beds where you can do that. Although we have a profiling bed at home we can't really cuddle on the bed at home either. I'm so torn. Have you come across this or seen any good solutions?

I've been there many times until this February when I stopped being able to drive and I love it. I have 2 hospice nurses that visit.

I'm 100% ok with dying there but was mistaken that it would be more peaceful at home. Thank you so much for the thread.

My question is more a dementia related one so fully appreciate that you might not be able to help.

My Mum is only now 70 yrs but has been very seriously ill for 10+yrs now, as well as the latterly diagnosed dementia she has polyneuropathy (so wheelchair bound) and severe COPD. My Dad is her main carer but as she needs a hoist to move her from bed to living room etc she has carers who come in 4 times a day to help.

Our main issue is that my mum is upset 99% of the time, and this has been ongoing for 6+ years. She never understands where she is and is always anxious/worried about where is home / when she's going home. It's heartbreaking. We point out her family photos on the wall, her clothes in the wardrobe etc but nothing helps. Nothing makes her feel secure.

We play music she used to like, speak to her about what's going on in our lives. Ask what's she wants to eat, what she wants to do. She just wants to go home (?)

Can you give any help or tips that might help her feel more comfortable?

And as a foot note, fuck me, when are we going to legalise euthanasia in this country. My old Labrador was treated better at end of life than my poor mum suffering and upset every single day for years on end.

What types of cancer? I'm wondering if this is something I should be preparing my family for as well?

I worked in a care home when I was in college. A lovely, strong old chap had his family with him for days. He died when the family popped to the shop next door for a bite to eat and some fresh air.
I always felt that he waited for them to go out to spare them from watching him die. He needed that space to finally pass on and it was his way of being kind to them.

I hope your dad is ok and can find peace about what happened.

Thank you for what you do OP ❤️

Please let the nurses know that cuddling your husband/children is important to you at end of life, I have got many couples in bed together for the night with a bit of careful manoeuvring and it is so valued, but lots of people are afraid to ask. I do have the answer to make it more comfy for everyone but it's an expensive one and not all hospices have one (even though I think they should!). The answer is a cuddle bed. It's essentially a hospital bed that expands to a double bed when needed and then goes back to normal dimensions when not needed to be big for personal care etc too (if that makes sense) and they come with pressure relieving mattresses, they're very costly but honestly worth very single penny in my opinion. Link here: (incase anyone has deep pockets or wants to go on a fundraising mission) www.montcalmcare.co.uk/the-cuddle-bed

Xxx

I'm so sorry to hear of your mums suffering, honestly dementia is the cruellest of diseases and I'm really not sure there is anything you can do, because that's the way the condition affects people. Is she on any form of any medication to help? I would give the GP the call and see if there's anything he can suggest medication wise as it seems you are doing everything you can non medication wise to help her x

as someone terminally ill, talking about the weather is NOT dodging the elephant in the room! Of course I have an opinion on the weather too. Dying is not the only thing going on in my life!

@RimGreeper just as well we talk about everything and anything in hospice then! 😂