Mum - hospital to hospice - hospital Resisting referral

[Hospicehelp]

I am at a loss as to what to do. I can’t get my mum into a hospice and I don’t know what to do.

My mum has had cancer for several years (breast, initially went to bones and Nov/Dec went extensively all over bones and several liver mets. The bone mets are so severe that the bones are disintegrating and breaking (leg broke).

hospital obviously, as usual, want discharge soon to get mums bed back

So her situation - bed bound (neither leg works, one broken and reinforced with metal but won’t ever heal, the other full of cancer, painful. She’s totally immobile and bed bound - has catheter and poos the bed, requiring 2 hospital staff to clean up. They wash her in bed. They change the sheets by rolligm
wkth her still on the bed. She slips down the bed and has to be repositioned by 2 staff using a special slide sheet. She’s totally bed bound. She’s on lots of medication. Constant morphine from syringe driver. Has not been able to eat/exist without retching and vomiting since Nov/Dec so is on anti sickness meds. Also steroids every day since Dec and a whole load of other meds. Laxative, fortified stuff etc. Also had a bit of blood transfused yesterday. She sleeps most of day and night. she can still eat (the drugs enable this) and aside from small bouts of confusion from calcium levels, she is 100% mentally there. She’s nearly 80.

the palliative care nurse was very cagey but seemed not to want my mum to go to the hospice. Talk of discharging her home (lives alone) seems utterly double think ridiculous. She is getting 24/7 help in hospital from staff and from visitors if she can’t get her hands to the call bell (my sister slept on a chair in hospital last night with her).

why won’t they refer my mum to the hospice? We are happy for her to be in hospital or hospice due to the care needed. It seems abusive to try and put somoen like this to their home, alone, with many (quite unreliable) visits. I think a hospice referral , to go on their waiting list and wait in hospital would be the best thing for her. When the hospice initially took her onto their patient list in December, they told her the hospice was lovely and would she like to die there and she said yes she would. why now are they trying to back out? The nurse is coming again today to see her in hospital. The hospice worker who was our assigned visitor/support and had been helping with meds hasn’t returned my call. Presumably as dm is a hospital inpatient.

The nurse keeps referring to an “alternative place of care” presumably a nursing home, which my mum stated at the outset she didn’t want. And it shouldn’t be necessary because me and my siblings (there’s 5 of us so we have been able to do it) have had a rota of staying with her at home, before this current admission. Even if we carried on, which we are willing to, the level of care required is too severe.

what can I do? Why won’t they help her?

Not all nursing homes are made equal OP, of course though it is scary when you’ve heard negative things

Look into the specific nursing home. My DM was discharged to her care home (not nursing home) and the end of life care she received from the staff was exemplary. The only issue was some delay in district nurse visits for injectable medicines, but this should not be an issue for a nursing home, with nurses.

I stayed with her for the 48 hours between her discharge and death, and there was never any suggestion that I shouldn’t.

Can I sugguest you need to put your misconceptions aside about nursing homes and go and have a look at one. I'm sorry you are in this position - it's crap.

The nursing home I have current experience of is really good. There is always an RGN on each section (it's divided into three sections) supported by carers. They give medictions. They manage manual handling really well and they welcome family members at all times (for those not in a terminal situation they expect us to leave by 8pm, but I know they would vary in this in an end of life situation).

They take care not only of the resident but the family too. They have lots of experience of death (and coralling unwilling demented people in!) and I've had sage advice from the staff (at all levels). And I've been really impressed by how they focus the person "it's their home now, if it's what they want we will have to deal with it).

Ex hospice worker here - i am so sorry you are going through this. I just want to flag a few things that can be relevant

1. hospices have a tiny number of beds in comparison to the population they serve (and many hospices are in financial trouble due to reducing charity donations)so its always luck of the draw and a need to prioritise bed management in terms of who gets these - sadly the vast majority of older adults will have needs that mean they still either die in hospital or nursing home, if a hospice bed isn't available at the right time or hospice at home services are not available in your area.
2. It's not possible to ever "promise " a bed in hospice - we tend to talk patients through their wishes of where they want to die and record them , so your mum would have likely expressed it as an option, but no one is ever promised they "will" have a bed there unless its very specific planned circumstances .I know from my own experience that our patients can find this very difficult, especially when we have known them for a long time .
3. postcode lottery - services vary hugely so i would suggest you sit down with the hospital palliative care team and talk it through and specifically ask them why is hospice not an option - hospital palliative care services are separate from hospice palliative care services but in most areas there are links eg. NHS palliative care consultant working across both the hospital and hospice who is the ultimate decision maker for transferring patients across. Some areas have specific bed arrangements with nursing homes that offer a end of life service within that setting.

$. I would also question them as to what are the aims of current treatment - eg, why is she receiving a blood transfusion ; why is she still on "loads of medication"? if she is actually dying and near end of life then active treatment starts to become unnecessary and only prolonging the situation, so the fact they are still doing eg. blood transfusions is quite confusing for me and suggests she is not necessarily viewed as end of life?

The nursing home my relative died in was wonderful - they had a corridor that was pretty much a hospice/hospital.
I don’t think you can provide the level of care she needs at home anymore.

This x 1000.

Your poor mum, she deserves way better than this.
We had my gran at home on EOL care - it did only take 10 days but it was brutal. She needed round the clock care that we weren't equipped to give and we had to call the nurses all hours of the night.
She deserves a hospice space.

Nursing homes can be really good. The one where my OH died nursed him with gentleness and love during his last weeks. He weighed next to nothing and was a bundle of bones, but did not get a single pressure sore.

It did however cost an arm and a leg and I had to sell my home to cover the cost. The LA did contribute in the end, but my "top-up" amount was about 5 x their contribution, as it was a very expensive home - but we got what we paid for: excellent care in a lovely environment.

Subsequently I got Continuing Health Care Funding on appeal after he had died.

Just for info, we had also had live-in care at home for a while but for a whole host of reasons this did not work out satisfactorily, so he moved to a NH.

@Octavia64 just to flag that "hospices are for those within days of death" isn't always the case - both the hospices i worked in took people in for symptom management, as getting on top of symptoms is sometimes better in a supported environment especially where there is psychological distress/family challenges (eg.young children at home) on top; we also discharged plenty of people home from hospice who'd been transferred from hospital simply because actually predicting end of life is very tricky,its easy to get wrong. Sometimes people just need a calm,supported environment rather than the stress of a hospital ward....but this does mean we also transferred people to nursing homes, as they became stable and not imminently end of life. Hospice criteria and services vary hugely across the country as a result of their charitable nature and origins ( likewise charities like Macmillan, Marie Curie may have a larger or smaller presence and services depending on area, which people don't always realise)

To answer a pp, the blood transfusions are one unit and they are for symptom relief so they aren’t prolonging life I don’t think. She’s having another one now.

Has your mum got a social worker for discharge planning?

No, is it something we should have?

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!

She’s in a trauma ward because the cancer broke her leg. The doc giving the transfusions is not an end of life doc.

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 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.

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.

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.

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.

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.

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.

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?

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.

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.