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?

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 .

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

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!

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!!

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.

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.

Thank you all
it seems shocking that more than 100,000 people die of cancer every year in the uk, but hospice beds are like 15 per big city. Very sad indeed.
I’ve found out that the blood being transfused was from a doctor who was not on palliative/end of life so there won’t be any more now. Mum is in a really bad state and has declined even over the day. The hospital staff are excellent though. We need more hospitals and more hospices :(

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

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.

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.

@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.