Mum - hospital to hospice - hospital Resisting referral

@Hospicehelp tell them her preferred place of care for her death is not at home. They need to look for alternatives unless they are happy for her to stay in hospital until the end.
Hospice beds are short supply and usually for very short stays and symptom control management.
It sounds like your mum needs to be somewhere though, has a nursing home been considered under fast track chc? Or community hospital bed?
It doesn't sound like they are communicating the options well.

We also only have one hospice for the county.
They have to prioritise those with complex needs. This would include people who require multiple medication changes, dose adjustments etc to manage symptoms or a terminally ill parent of young children.
Many people who are palliative/ end of life can be managed in a residential/ nursing home and this is what usually happens. 24 hr care is needed, but this can be managed by carers/ general nurses, with support from gps and the community palliative care team.

Until my husband was dying, I assumed that anyone who needed a hospice bed could have one. That was stunningly naive. They have a tiny number of beds compared to the number of people needing one. And of course it's impossible to plan in advance because admissions tend to be last minute, and no-one knows how long anyone wiill be there.

We were also told that no overnight Marie Curie nurses were available (I was nursing him at home) but 'fortunately' one of their patients died earlier than expected, and we had a MC nurse for his last two nights, so that I could sleep.

If your mum goes into a home @Hospicehelp it won't be a standard care home. Only a few are registered to give palliative care, and those that are, tend to be the best nursing homes (nut just care homes) with fully trained nurses and access to doctors.

I hope that your mum can end her life peacefully. It is clear that you are all putting your best efforts into achieving this. x

OP I know you’ve stated you and your mum don’t want this but you’d be amazed at what we can cope with at home. I’m a district nurse , usually get a bad rep here on Mumsnet on this type of thread and I know every area and team will be different. We look after lots of palliative patients in similar positions to your mum. We get all equipment in including hospital style beds and slide sheets, fast track funded care support with two carers four times a day if eligible which it sounds like your mum is and sometimes more if the clinical need is there which we negotiate with CHC. Then the district nursing team attend for the syringe driver and any injectable meds. We’d visit one planned visit per day for the driver and in between as many times as needed 24 hours per day 7 days a week to manage any symptoms. Where I work, all of us DN team leads are now prescribers and with our skills we’ve massively reduced times palliative patients are waiting for drugs and increases and titrations of meds and on the whole get really good feedback from relatives regarding our care at home. We have access to a 24 hour helpline direct to a palliative consultant if we need to discuss anything or we’re struggling with symptom management, and there’s also the community specialist palliative nurses to review also if we need them.

We tend to use hospice at home services through our local day hospice (no inpatient services there sadly) however they’re really good at providing day sits and night sits to allow families a break who don’t want their relatives to be alone. There’s also no rules obviously at home, you can do as you please and come and go whenever as per your mums wishes.

I know it’s not for everyone and probably not right your mum and your family right now. It is a big overhaul but just wanted to paint a picture of what palliative care at home can look like. But I know services are different everywhere which is why it makes it so hard sometimes to understand what the process is and make an informed decision.

In the whole of my county there’s about 26 in patient hospice beds. So sad when people want to choose this as their place for end of life care. I can’t remember when i last successfully got someone into one as per their wishes, and they seem to only take the patients who are completely unmanaged symptom wise. Although I always warn my patients of this much earlier in the journey so that they don’t think this will be able to happen automatically when the time is right.

Fast track bed in a nursing home is also an option as some previous posters have suggested. You’re right, some are probably not great and some fantastic. You’d have to have a look at your local FT approved homes and go and see them to know how you feel I think.

Sending best possible wishes, I hope your mum gets what she needs. Just know despite the challenges of all the systems there really are people out there in all settings who want to provide the best possible care and I hope you come across some of them.

I do want to highlight the difference between Palliative care and End of Life care. People can be under palliative care for years even - they may be still working, raising a family,having chemo/radiotherapy- so blood transfusions can be totally appropriate, and prolonging life via active treatment for people under palliative care is also totally appropriate if that is their wish . To be given blood transfusions for symptom relief at the end of life however, when the prescence of and symptoms of anaemia eg. lethargy,breathlessness are also common parts of the dying process, is the over-medicalised part.

We were allowed to stay as long as we needed/wanted and they even fed my husband after a long drive down to get to us! They really were amazing!

I was allowed to go look around before saying yes to taking the room!!

My dad was told our local hospice didn’t have any beds for him so he chose a nursing home with the hospice nurses attending when necessary as he didn’t want to go into hospital to die.

The care home was absolutely lovely- it was only for a few short weeks and the staff amazing to him and me and wider family. We had a 2month old when he declined so was pretty stressful all round but I knew he was safe in the care home as I couldn’t meet his needs with him staying at home!

Hospice seems to usually be for the expected final time duration. This is of course isn't ideal, especially with shortage of places and loved ones going downhill rapidly when on palliative care. A care home would most likely be more comfortable than hospital until you could find a hospice place.

It's so sad that, by the time you're given weeks/days, the trauma of moving you to the hospice is often not advised so a no win situation. Xx

I’m sorry for this very sad situation . She is not having end of life care . A transfusion is active treatment to prolong life not palliative care. The medics looking after her need to be very clear about active vs palliative care. I would ask for a meeting with her consultant.

It sounds like her life expectancy is now more and she has stabilized . She needs a nursing home placement for 24 hour nursing care. Your family will not manage and she does not meet the criteria for a hospice .

It’s a disgrace that at such a difficult time you are forced to fight to get the care your loved ones need. - and to have to fight for funding. It nearly broke me in the end. LUckily I had wonderful DDs to share the load.

Just to add the nursing home where my OH died allowed me to be there 24 hours a day, initially sleeping in his recliner chair by his bed, and then they gave me a room free for his last few days. They could not have been more helpful.

There are poor nursing homes, but not all of them are like this. Examine their CQC assessments and go round yourselves and get a feel for the places.

My Dad had liver cancer, and went into a hospice for symptom management (he couldn't eat or drink at the time) and community care was a joke. He spent a whole month there, the staff were amazing and Dad really picked up because he loved it there. However the Consultant then said that they couldn't keep Dad there until the end as he felt Dad could have 3 weeks to 6 months.... so he recommended a nursing home even though my sister was pushing for Dad to go back home. The nursing home wasn't great in truth in terms of medication/nursing care but the care staff were outstanding and we were welcomed in any time. I used to go from work at 5pm and often sit with Dad until 11pm when he fell asleep... and one of the staff would always walk me out to the car park. We were showed the staff kitchen to make ourselves drinks etc. Luckily the hospice Consultant was in touch with me constantly, and when I expressed concerns at the nursing care, he sent in the county palliative nursing team who took Dad's care over. Dad was there for just over 4 weeks before he died.

My personal take on hospice care was that they dealt with respite for exhausted relatives and symptom management of their patients rather than actual end of life care. The one Dad was in has 13 beds... and its the only in patient hospice for the entire county. Beds are like hens teeth.

Sadly hospices mainly rely on charitable funding and in recent years have had to close beds /reduce services. Our local hospice is purely for those not managing symptom control and even then only if there is bed space available. We use local nursing homes for patients like your mum, she has medications in place and can be managed by the nursing home staff ( just make sure it is a nursing and not residential home).

if the hospice if full and there is no likelihood of a bed space in the near future ( waiting list with people requiring urgent symptom control) then I suspect the palliative care specialist is encouraging you all to look at other options?

Hi OP, I’m really sorry you are going through this.

I am a Nurse and just from my experience:

• Hospice beds are few and far between these days, in my area they are so scare because they are moving towards more community care and people dying in their own homes. The few beds there are are reserved for people who have days to live and have very complex pain needs (for example would require a frequent change in syringe driver/pain relief etc) Any personal care needs are now delivered on the community by hospice carers, particularly if there is a large family that can also help with some care.
• It actually sounds like they are still acutely treating your mum, if they are giving her a blood transfusion? If she was as terminal as they had initially said they likely would have discontinued treatment to not cause any undue stress so you maybe need to check what the goal is with her care.

It is a really hard situation and I hope you get the help you need, take each day as it comes.

I agree that it’s having active treatment that is not compatible with hospice care. Blood transfusions won’t work on someone who is dying, hence why she needs another. And no need to take lots of meds when EOL. I’ve seen palliative patients still taking meds to lower their cholesterol or BP, just why?! And medicating the eating issue. If she decides no more treatment, the hospice may accept her. But if you’re constantly treating any and all deteriorations then nursing care will be more appropriate.

If you are in England and it’s thought mum is in last 12 weeks of life then she should get CHC fast track funding which is fully funded package by health- they may consider home but realistically they commission beds in nursing homes and will have a team who arrange this -usually nurses and they usually use homes with good standards of care not like the one down the road that is probably only considered just about OK. Ask the ward who they have referred to and for contact details. If she is needing morphine through a syringe driver I think nurses would be needed for that so home may not be a possibility or in mums best interests. Homes often let people stay, some will have better facilities than others but usually are very accommodating and supportive.

Team collaboration is extremely important at this time .That can be where the hospital palliative service come into their own because they can liase with the ward team. who may be inexperienced with end of life situations. It's always ok to ask "why" - for some people at the end of their life, they are desperate to stay alive as long as possible - so they can go home and die there ( is that what your mum wants perhaps seeing as the nurse is talking about home as an option?) so they can make it to a significant anniversary/birthday; have their grandchild born; be there for their family - and your mum has the perfect right to choose treatments that keep her alive as long as possible. but i'm so aware of med staff who think they have to throw every option at the patient regardless of its efficacy.

Had similar with MIL last year. Bed bound, sleeping all day & night - no hope of recovery. She was in the stroke ward & they were understandably desperate to get the bed back.
We had a meeting with her care team & asked about hospice care. This was refused as they couldn’t determine how long she might live. They actually wanted to send her home (in an almost coma). Then we requested that a care needs assessment be carried out in order to determine if a nursing home would be able to accommodate her. We were asked to provide the names of 3 nursing homes we preferred. In the end they were so slow to organise this she deteriorated so much it was not possible to move her & she died in hospital.
It’s a disgrace that at such a difficult time you are forced to fight to get the care your loved ones need.

I understand this would make you wary, but one bad one doesn't mean they are all bad (And was it actually a nursing home or just a care home? The levels of training and qualification for the staff are quite different.)

A good home - and there are many - will allow you to visit at any time and stay as long as you like. They will have training in lifting and turning - which you and her other relatives don't. They will have qualified nursing staff who can give meds you wouldn't be allowed to at home, and can usually get hold of a doctor faster than you would be able to.

A nursing home may not be as specialist in end of life care as a hospice, but they will be trained and equipped for it. It may not be the perfect option but is almost certainly far better than discharge home or remaining in hospital.

Ask questions about why they think a nursing home is best. Ask about the facilities of the various options. Go and visit them. You may be reassured.

My father in law was discharged to a hospice and then discharged from there to home because he didn't die in 2 weeks and they dont allow much more time there. He eventually died 4 months later. It would probably be a care home that she needs or just nurse her at home until she passes, thats what we had to do. We are in Wales. Sending hugs OP X

i would really be questioning this in view of the rest of what you have told us - i don't think they are really treating her like an end of life patient. Its not uncommon, hospital dr's still want to do all they can but it can be questionable in terms of what their aims are . edited to say, she is bed bound, full care needed ,sleeping most of the time , hence why i am questioning this!

Has your mum got a social worker for discharge planning?