My poor mum, hospice want to send her home

[helpforhospice]

Any help appreciated...I think my mum "isn't dying quickly enough" as she has been in the hospice for 2 weeks now. I don't know if I can contest that or what to do.

She is in a hospice with advanced cancer (terminal, liver etc)

She's on a syringe driver (pain, sickness) her mobility declined and her legs just don't seem to work anymore so she is bed bound. She eats only icecream, iced water and some soup sometimes but can't tolerate it at a temperature that she would ordinarily have eaten it at. She has a catheter and is pooing on a nappy pad in the bed.

She has proper mental capacity and can get all the test questions right for this, when she is not in delirium or asleep (which is 22+ hours per day I would say - she can only stay awake for a few mins at a time). She is in and out of delirium every day now and when she is in it, she doesn't know where she is, what is going on, she is hallucinating things that aren't there and she is frightened. When awake, briefly, she falls asleep mid sentence during very short conversations and her voice has become so quiet that you need to put your ear to her face to hear her.

Sometimes I think she is near death and she was admitted on that basis but they want to send her home. I don't know how we can possibly manage. We were absolutely destroyed trying to care for her before she went in to the hospice and she is afraid and doesn't want to go home. Her wishes were to die in the hospice. I don't know if she would even make the transport home, that in itself might stress her destroyed body to the point she dies. She would have to be belted to a trolley in an ambulance.

what should i do? is she not near to death?
all her life she has helped people and I don't know what to do for her :(

I am so sorry.
Can you ring Adult Socisl Care and speak to someone there who may be able to advise you further? Or maybe your Mum's GP?

Have they explained why they want to send her home? What criteria would she need to meet to remain in the hospice ?

im so sorry you’re going through this

I don't really understand why they want to send her home, no, because they agree that she has declined in the time she's been in there. She had no delirium before, for example. I think it may be because they feel we are capable of meeting her needs at home. But I don't really see how. She lives alone, she is on special repositioning sheets, I think the hospice people would visit everyday but I don't really understand. She has on and off needed medication for agitation sort of symptoms and they are injecting that.

she couldn't even eat her lunch of soup, she only managed a bit of icecream.

which doesn't even seem like nutrition, I think she must just be having it to make her mouth feel better

I would push them to keep her where she is. This is not fair on your mum to send her home where she would be on her own for periods of time between visits.

I was in a similar situation until my dad died a few weeks ago. You need to be very clear that you can NOT meet her needs at home, and that she needs to stay exactly where she is. Ask to speak to whoever is in charge and explain this to them, be firm but calm (not easy I know!) Good luck

I agree with this, I’m so sorry, it’s so hard.

Hospice beds are in high demand. And you’re sadly right that she “isn’t dying quickly enough”….but nobody can predict how long these things take.

It is sad that people need the beds, but sending your mum home at this point isn’t the answer.

You need to be clear that you can’t cope at home.

My dad died at home. They left us to cope, and we kind of just did….but it has left my mum and I very traumatised. We desperately needed some support and I’m so shocked, in hindsight, that we didn’t get it.

If your mum isn’t eating, I agree it doesn’t sound like she has long left. Just sit with her, and say she can’t go homexxx

Im so sorry you are in this position and what you are going through. From what I can find online, they can only discharge if her condition improves or stabilises. So I think you need to follow @Pinkywoo advice and firmly state you don’t have the capacity to provide the level of care required. Your mum’s condition has deteriorated (as they’ve acknowledged) and she deserves dignified hospice care. I would chat to the Macmillan helpline to get the right words to use.

I had this same situation when my mum was dying. I understand how terrified you are on her behalf as I was too. We just kept saying no, that there was nobody to help at home, and trying to kick it into the long grass until eventually it was too late and she did - indeed - pass away in the hospice. I send you and your family all best wishes at this really horrible time.

2 weeks is no time at all, I would go with the No and kick it along as well. If it helps, pineapple juice is good for keeping the mouth fresh and clean and we were advised to use with cotton buds to rinse Mum's mouth out when she was on end of life.

As end of life the food isn't providing nutrition. But a little of what she likes to eat if she can still swallow is fine. There will come a time when it will need to stop due to aspiration potential.

I would carry on as is otherwise though.

No advice but I'm so sorry.

I’m so sorry too, please talk to staff and say what you’ve said here 💐

Hi there lovely flowers for you as such a tough time and sadly been here too - explain the risks if she comes home ie eating drinking bed sores and to have a respectful kind and dignified end of life support needs to stay - if your mum has capacity do ask her what she would like to do when able to talk as her decision did she discuss her ideas when not so poorly my mum came home it was very hard but want she wanted 💕

Thank you everyone, I will have a good look through this advice. It's a shame that hospices are so few and far between.

What @YorksMa said, just push back as much as you can. Sorry but given your DM is on a syringe driver and a spoon of ice-cream a day it doesn't sound as though she has long.

We had this decades ago when FiL was dying of cancer in hospital. Talk started up of sending him to a care home, and we were bewildered, as, to our eyes, the only way he was leaving the place was in a box. To this day I still have no idea what glue they were sniffing. We weren't wrong.

I belive hospice beds have to be prioritised for people with unmanageable symptoms. It sounds as though your mums are under control. Could she be discharged to a nursing home? Rather than home.

We had the same potential issue with my mother, who was worried she'd go from the hospital to the hospice but not actually die within the two weeks and have to go into a nursing home or back home. A sudden collapse meant she ended up not leaving the hospital side room she was in as she fell into unconsciousness before she could be transferred, which was probably a blessing in some ways.

I can see that hospice beds are under a lot of pressure but how can you possibly know how long people will 'take' to die?

It’s not the pressure on beds, it’s the nursing shortage.

OP, ask if they’ve got a community hospice team because they really can assist. You’ll still need24/7 nursing which ain’t cheap. If not, flatly refuse to let DM into the house.

So sorry for you, but medics try this all the time. A mate had her ‘dying’ mother in the front room for 8 months.

This must be awful for you. The referral criterion for hospice placements is usually a prognosis of 2 weeks or less, but determining prognosis is not an exact science and people often plateau and live longer than expected. On the other hand ( sorry to put it so starkly) your mum could deteriorate quickly and die soon). It really doesn’t sound like you can just take her home. If the hospice really wants her out, then the next option should be fast track Continuing Health Care, with home carers or funded nursing home placement. Maybe depending on how things look after the weekend, if she can’t stay where she is, ask for a multi disciplinary meeting and a referral for a CHC assessment. 💐

I am so sorry you are going through this. We had the same situation with my mum last year. The hospice said they were not there for long term care (she was there a month, having gone in at death’s door with uncontrollable vomiting which they were able to sort). They were going to send her home to be looked after by my 90 year old Dad. While they were arranging the “care package” (carers 4 times a day), my mum deteriorated and on the day she should have gone home, she died. I dread to think how we would have managed her final days at home. My pleading that there was no care at home didn’t work. The poor staff understood but they did not have enough hospice beds to keep her there if symptoms were managed. I hope that you have better luck. Sending you a hug at an awful time.

We were in a similar position, mum was in hospital declining fast (terminal cancer). We were told options of at home care, hospice or nursing home. We pushed for hospice they were uncertain (due to two weeks prognosis) but agreed.
Hospice was wonderful and explained she may pick up due to increased level of care. (Which she did initially) . Whilst they were making noise of potential discharge she rapidly declined and was barely conscious, no longer able to eat or talk. She died 3.5 weeks after arriving at hospice. I’m so glad she stayed there.
They would need to make sure home would meet need you would need nursing care at home. Insist on 24:7 care being in place before she leaves.

Ask them to increase her morphine to alleviate her distress.

This happened to my Dad but he deteriorated and died in hospice.
Do not agree to take her home. Ask them to find her a suitable nursing home under continuing healthcare if they want to discharge her.
This will take some time and she may then end up staying where she is.
I’m sorry you are going through this and hope your mum dies peacefully

My nana experienced this around 30 years ago - not dying quickly enough for the hospice so they wanted to send her somewhere else. My wonderful wee nana had full mental facilities & said: there is only one place I am heading - will you help me get there? The reared back in horror at suggestion. But she knew she was dying - why not own it and if you need the bed that desperately hasten that, instead of causing upset and distress by moving her? She died the day she was due to be moved - final act of defiance.

Whenever those against assisted dying trot out the usual lines about 'good deaths in a hospice' as a solution, I give them the side eye..