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?

Hospice admits are normally for patients who are only expected to live for a set number of weeks (unless respite). You need to find out the hospital admission criteria and if your Mum meets this.

I am sorry for what you are going through.

It may be that there are very few hospice beds available and that they have criteria that your mum maybe doesn't meet? Lots of places around the UK don't have in patient hospice beds as they are not nhs funded.

Your local system likely funds a number of nursing home beds for patients who require palliative care. And this may be what the nurse is referring to.

If you and your mum are adamant that this type of care is not something she will consider then the next option is to return home with a package of care from carers and support from community nurses to manage the morphine.

I'm sorry to hear you and your mum are going through this. It is very hard. As above pp said, it can be about the hospice guidelines. Our local one will take referrals from people not expected to live more than 3 weeks. At times, they have needed to shorten this. With my M in law, who was in hospital with terminal cancer, she was given a package of support at home through social services, Macmillan care and family filling the gaps. She lived for a further 3 months. I would push back and ask what care from outside agencies is available. Take care of yourself.

Your mum needs to go into a nursing home. You can’t take her home and do that level of care and you should resist all pressure from hospital. If she goes home she will need two carers 24/7 from the sound of it. Hospice is definitely only for people with a few weeks left.

Whether she can be referred to a hospice or not, you need to state that you have concerns about the discharge, your worried that it will be an Unsafe Discharge, that you don't understand what is being suggested and how this package of care will meet her needs. Ask what kind of mobility assessment had been done - she needs the assistance of two just to be repositioned so she can't go home. The choices are a nursing home, or the hospice, but if she has a syringe driver then I suggest a hospice is the most appropriate place? Ask what the criteria is. You can also ask to visit any placement before accepting and decide then. If they want to discharge and say you have no choice this is not actually true. You must have good reasons, but there is legislation in place to push back against this. I sought an emergency Best Interests decision in the Court of Protection and won. And the social workers, everyone, were supportive because it was being suggested because of 'the system' not in my dad's best interest.

Be very polite but also very firm. It's OK. You state over and over that you are advocating for your mother, that you want to know how her needs will be met in a suitable environment. Put it in writing to the hospital social work team who will be facilitating the discharge. There must be a whole host of assessments done, from assistance with eating, washing, mobility etc Ask how these can be managed in nursing home.

But start with the criteria for a hospice, criteria for a nursing home and then see.

I’m so sorry.

My local hospice only takes people who have symptoms that aren’t managed. So pain that isn’t under control, unmanageable confusion etc. it sounds as if, given the plan in place now (right equipment, right staff, right medication) your dm can get by. The local hospice in that more stable situation would work towards discharge to a nursing home.

I certainly think it would help if the nurses and others would tell you the truth as they see it, rather than using euphemisms.

This was FIL. There wasn’t a hospice bed available and hospital is for the acutely ill, he couldn’t stay there indefinitely, quite rightly. He went to a nursing home where he died peacefully.
As an ex district nurse of many years I would never choose to die at home. Too many gaps in the service. Promises of help that can’t be met. I wouldn’t want it for my family either.

My mum was give 4-6 weeks to live, 6 weeks ago
i don’t understand how she doesn’t meet criteria?

Sorry you’re going through this OP. As others have said it may be because she’s plateaud and expected to live too long to meet criteria. Say there are 20 hospice beds in your area - if they were all filled with people who lived 3 months then there would be no beds for 3 months to admit anyone into. Often people go into the hospice right at the very end when their symptoms are very difficult to manage in any other environment.

Sorry to be blunt, but because she is still alive

This is right, the gaps in the service are shocking. We called for help a few weeks back and they didn’t show until 2 days later. Said they had to prioritise those on insulin

i don’t understand why a hospice worker came to support us, offered mum to die in a hospice, recorded those wishes and then reneged.

Ask what the criteria are - they vary. And they may try to evade the question, because it is t set in stone.

As I said, in my area it isn’t about the length of time left to live, it’s about how well managed the symptoms are. The hospice is still a medical centre with specialist doctors overseeing it, it’s not purely a place to die even though a lot of people do die during their admission.

Hospices are struggling to keep beds open - donations have fallen - maybes that’s the issue ?

We were in this exact situation and eventually the Macmillan team at our hospital were the ones who pushed it through. Does your mum have a Macmillan nurse OP? Or is there a team at the hospital you can speak to?

Ultimately I would say push, push, push. And keep pushing.

bluntly:

hospices are for those within days of death

if they are full they are full and it doesn’t matter what they promised (my dad never got a space and died in hospital)

incontinent and requiring 24 hour care is not enough for hospice referral either she goes home with 24 hour care or she goes to a nursing home

I have disabled friends who do live at home in similar situations and have 24 hour care but social services will not fund it you need to pay privately,

if she needs 24 hour care and doesn’t have the money to fund it at home then her wishes do not matter if the state is funding it you get what they provide. Which is a nursing home.

The really good care home here has levels of care - they have a separate wing for palliative care. It's really calm and the staff are amazing. It is probably worth exploring what the nursing home can offer rather than just saying no to it.

I haven’t seen McMillan anywhere, not sure why, if they have no presence in our area. I’ll look it up

Hospice only accept people who are expected to live for two weeks maximum here, my MIL went to hospice but on day 13 they were on about putting her in a care home day 14 she passed.

If she came home with a full care package, it does not always work out. I know this through my late FIL who was promised full care package but most of the time they did not turn up, which I know from talking to other people is not unusual. hence after an emergency he was admitted back to hospital.
a nursing home is not ideal for someone as poorly as your mum. FIL ended up in one but they are busy and do not always have full qualified nurses who can give your mum the things she would need.
i wish i could wave a magic wand but all I would suggest is
keep trying the hospice nurse. maybe ring the hospice direct and ask to speak to someone as the original person may be off for some reason
get in touch with Macmillan nurses they may be able to offer some advice that will help you and support you
i have a feeling as you have willing family they are stepping back to let you get on with it.
sending love to you all x

Sorry forgot to add, speak to the hospice yourself and explain the situation. It my mother in laws GP who got her a place in the hospice in the end, he worked out of hours to get her a place as we could not meet her needs at home. District nurses weren’t very helpful. Speak to the ward sister & the doctor, does she have a DNR? This is vital to getting a place in a hospice too.
sorry about your mum x

Your first line is incorrect (having had a LOT of experience with hospices). They all have different criteria. I had a relative who was in a hospice for several weeks and then discharged for a period before he was re-admitted.

However your second comment is spot on. If they are full, they are full. And unfortunately - as harsh as it sounds - usually until people die (or are, occasionally discharged) then there isn't any way of "freeing" up beds.

@Hospicehelp sorry to hear of your situation. What I am about to say will not sit well with some posters on here but I do speak from experience. Your DM may not want to go into a nursing home and you may be willing as a family to support her. The reality at this stage is she needs full time nursing care and I very much doubt all 5 siblings are qualified to provide this. Short term maybe but longer term it is not feasible. Nursing homes are great places as the staff do all the bits that are not so nice such as cleaning up incontinence situations and feeding the residents, showering them etc. This means family can spend what time is left enjoying time with your DM. I have said this many times but there comes a point where what an elderly person needs has to trump what they say they want.

Definitely look them up. Honestly, they weren't brilliant at home visits (probably due to lack of resources) but once we were in the hospital / palliative stages then they were fantastic and advocated for us massively.

It’s so sad to read what you mum & family are facing…I’m extremely sorry for you all. Please don’t dismiss a nursing home as a solution…many are well staffed with very experienced, caring staff who can look after your mum well.
Look up CQC ‘reviews’ of homes in your area or ask friends who may have had family in these places to perhaps help put your mind at rest.
Your mums needs are paramount and I hope you can get quality care asap.

I’m just terrified re nursing home. There is one in my road and it has been in the news for abusing residents. It’s still open.

plus the hospice lady told us we can stay with mum in the hospice whereas I can imagine nursing home will allow. We’ve been allowed to stay in hospital as she was put in a side room as they thought she could die that day, indeed that was their expectation