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Elderly parents
Original poster

Refusing hospital discharge for palliative patient

88 replies

Spudlet · 28/12/2023 09:40

Ok, this might be a bit of a long story.

Dfil, 76, widowed, diagnosed with a brain tumour 6 months ago. Decided he wanted no life prolonging treatment. Also has had a catheter fitted since Easter this year for prostate issues. We’ve been managing between us since then, with DH and BiL taking it in turns to stay with him for a few nights at a time to keep him company, make his meals, dole out his pills and so on. He lives alone in a little village, quite isolated without a car (and of course his car is now gone).

He’s been getting steadily more and more confused, and having more and more trouble with his catheter. The community nurses come to see him but there’s not a lot they can do, and they also failed to check him for pressure sores or warn us, so he now has a grade 3 sore as well. His balance has gone - the other day he fell in the bathroom while having diarrhoea and landed in his own faeces. He won’t let his sons clean him up properly and can’t shower.

Finally on Christmas Day, things deteriorated to the extent that he was admitted to the urology ward of the local hospital as he was bypassing his catheter with blood pouring out. Unfortunately they then failed to give him the steroids that he needs to control the tumour symptoms (they were told what they were but the hospital docs didn’t prescribe them) so when DH went to visit the next day he was hallucinating, talking to dead people, pleading to be taken home, aggressive, and then tried to climb out of bed and fell. (A complaint is going in today). At the same time, the hospital was trying to discharge him! DH refused this as an unsafe discharge, but they are still trying to send him home.

We have all agreed that we can’t meet his needs at home any more. He is too confused, even now the steroids have been restarted, and when his catheter goes wrong he is in agony. I could hear him moaning and grinding his teeth through the ceiling when I was there on Christmas Day.

He’s been referred to the local hospice before this crisis, and when things were awful on Boxing Day I called them (and cried down the phone a bit, I’m slightly ashamed to say). They’ve sent an urgent referral to the hospital’s own palliative care team.

Can we carry on refusing a discharge from hospital? He doesn’t have his door key, and we aren’t willing to let him into his house. We get that the hospice may not have space yet - where can he go? We don’t know how long he has but it can’t be long now. DH and BiL are going to say they are no longer available to care for him at all.

His two wishes were to be comfortable, and not to break his family, and right now neither of those are being met. And we don’t know what to do.

Anyone with any advice, please. We are so stressed about this.

OP posts:
Pigglycat · 28/12/2023 13:07

It makes me so cross that end of life care is like this.
All the opponents of assisted dying always pipe up that we can manage pain and distress with modern palliative care, but the reality that I’ve had a ringside seat to in the last 18mths is dire.
Why can’t we provide decent pain relief for the dying anymore. It’s inhumane. My relative was being “kept comfortable” with liquid paracetamol, basically calpol!

Absolutely right. It makes me furious.

We had end of life drugs prescribed for my last elderly relative in her nursing 'home' and the GP had also confirmed that it could be appropriate to set up a syringe driver at any time, as relative was very close to death. When she started actively dying they didn't want to use the drugs as it was all 'normal' and 'not time'.

Long story short we managed to get district nurses out overnight who did prescribe. Following day 0800 the day staff came on and without speaking to me or my other family cancelled the district nurse who was due to visit shortly. Couldn't understand what all the fuss was about. That afternoon my relative died. She spent 24 hours in pain, unable to breathe properly, and the trauma of having to fight for care all night (on top of years of it) will never leave me.

CoatOfArms · 28/12/2023 13:04

Poor old bugger. And huge sympathies to the rest of the family too. We went through similar with my dad a while ago, he had dementia but what took him into hospital was a fall and broken hip. They were talking about discharge no sooner than he had got him up to the ward, just assuming that mum would step up and do the "caring" never mind that mum was 81 and he was big and strong. It is really hard to keep saying "we cannot do this" under pressure from everyone who just wants the bed back. It's good your DH has his brother for support and all you can do is just keep telling them they're doing the right thing. It's very hard.

Iwishiwasasilentnight · 28/12/2023 13:00

overwhelmed2023 · 28/12/2023 10:24

Why a complaint? Try communicating first that family not coping and he needs further assessment for the most appropriate care, and a palliative rv

Show quote history

PALS is a step before complaints, their jobs is to help you liaise with staff.

Definitely contact PALS. Also ask to see in your FIL records that they have recorded that you don’t think it’s safe to go home for all the reasons listed. You need to make sure everything you the ward staff to do or not do is recorded.

Trethew · 28/12/2023 12:59

@Spudlet@ I feel for the staff, I do. I know that many of the nurses will be dying a bit inside because they know that they aren’t doing the job they should be able to, and it’s not their fault. I know many of them will desperately want to do better. I know that this goes above them. As a retired nurse I can say you are so right. But while it feels your FIL is being shoved off a cliff, there are equally desperate relatives watching sick and frail family members waiting on trolleys, chairs or maybe still in an ambulance, until they can be found a bed. There are no winners.

Pigglycat · 28/12/2023 12:53

If the hospice is a good, safe, compassionate one then it sounds as though he'd be best off there. Speak to them again urgently. Ask whether they're willing to have him (they'll prolly need to go out to him to assess him, to decide. Get that assessment going). If they are willing to take him ask for their best estimate of how long it's likely to be before they have space.

I'd avoid having him discharged into a nursing home unless you've really been able to research and find a good one. Sadly I have too much experience of just how awful many dementia nursing homes can be. If you've found a good place (the hospice) try to hold out for that.. The shock of moving is in itself very difficult for elderly, frail people to cope for and you should try to avoid two moves if you can instead manage with one.

Good luck OP Flowers

greentreez23 · 28/12/2023 12:40

When FIL was in hospital in similar circumstances we knew he couldn't come home. So we rang round every decent care home locally and arranged for him to be transferred there. Got a good one within a day as we were paying direct. Bless him he only lasted a week, but it was the right call.

Original poster
Spudlet · 28/12/2023 12:20

They are assessing now - on Boxing Day when DH walked onto the ward, he was greeted with a merry ‘he’s ready to come home now!’ As he sat there clutching at himself, talking to his dead dad, and asking after his dead wife 😢

However in any case they are now somewhat galvanised and hopefully the wheels will start to turn.

I feel for the staff, I do. I know that many of the nurses will be dying a bit inside because they know that they aren’t doing the job they should be able to, and it’s not their fault. I know many of them will desperately want to do better. I know that this goes above them. But we need them to care for FiL now, even if that means that we have to butt heads.

OP posts:
Enterthewolves · 28/12/2023 12:17

@Spudlet good luck with it all

wudubelieveit · 28/12/2023 12:12

a@Spudlet just to let you know that is is good practice for discharge PLANNING to start very early, it doesn’t mean that they are actively discharging the person and as he lives alone and is still in delirium he is not even medically fit for discharge yet….the fact he has OT involved shows they are still in the assessment phase…just be very blunt about what he needs to be in place for discharge. Until his uti is adequately treated and his tumour management is back on track he is not medically fit.

overwhelmed2023 · 28/12/2023 11:55

Spudlet · 28/12/2023 11:35

And thank you, everyone. This is so lonely, and having people out there who know what it’s like really helps.

Spudlet. I work with patients at end of life ,in General medicine and elderly patients with delirium every day and those with brain tumours, infections, or other malignancies etc. It may be more difficult as he is on a Urology ward ( surgical )rather than a Medical ward. Please ask for an in patient Palliative care team review. Pre covid a medical consultant might have reviewed him and taken him over to the medical ward but beds are so short that seems to happen less.
Communicate clearly in the ward to the ward sister or manager - they tend to have a little more time than the Drs. Fortunately my ward is extremely caring but when I see comments on here that are so sweeping it does make me cross - some patients do constantly call out and some do fall but they are extremely well looked after with us, however things do go wrong sometimes on admission especially due to time constraints and work overload most likely and the long weekend is a nightmare.
DM me if you want to ask something all the best to your FIL who I think needs a palliative rv which will be a holistic rv.

Original poster
Spudlet · 28/12/2023 11:35

And thank you, everyone. This is so lonely, and having people out there who know what it’s like really helps.

OP posts:
Original poster
Spudlet · 28/12/2023 11:34

Nursing home with hospice support. Or the hospice itself. That’s what he needs.

DM has been giving us pep talks on the regular. Retired nurse (I think I said) so she knows what’s what.

OP posts:
MereDintofPandiculation · 28/12/2023 11:33

Grumpynan · 28/12/2023 10:11

Im so sorry you’re going through this, is heartbreaking

yes you must stick to your guns, I had this with my MIL, the staff really pressured me to take her to my home but I just couldn’t- 3 children under 5 and a dying MIL who didn’t like me before she was ill !

speak to the hospice again, that sounds like the best place to start with, they will at least help with a care home.

Not care home, nursing home. He needs on site nursing care. For the skin breakdown at least, let alone all his other problems.

Original poster
Spudlet · 28/12/2023 11:27

Complaint is away (including bullet pointed list of what we want), and I followed up with a call, asking for the most urgent things to get sorted. So hopefully that will have galvanised them a bit. PALs should also be on the case - they’re next on the list of people to harass politely.

OP posts:
Sohereitissuddenly · 28/12/2023 11:16

You know, these are the threads I wish they'd pick up in the press and hold government to account. Instead they like rows about fencing and Xmas.

Enterthewolves · 28/12/2023 11:14

Anyone who is telling you not to complain is wrong, please do. I work in the NHS and complaints are one of the only ways things change.

If I were you I would:

• contact PALS and make a complaint
• at the end of the complaint say what you want to happen - so issues with medication to be resolved, including treatment for the UTI, apology for the fall and details on how they will stop that happening again, a referral to a hospice/nursing home bed by the social work discharge team, a Continuing Healthcare Condition (CHC) funding assessment to be made.

You all sound like you are being brilliant, it is so
so hard.

Tinselunderthetv · 28/12/2023 11:06

Speaking to dead people can be a sign that he is near end of life. This is awful treatment, I hope they find a space in a Hospice or care home soon.

My elderly relative was in. Hospital last week. I’ve never seen it so bad, elderly people on trolleys everywhere, nurses using the computers a lot but not providing pain relief or feeding patients, food and drink just left on the side, out of reach of a bed bound/can’t use legs/ill patient.

PickledPurplePickle · 28/12/2023 11:03

My Grandad was really confused and hallucinating when he had a UTI so hopefully that is what's happening to your FIL

When my Nan was waiting for a care home and needed to be released from hospital, there was a place she was sent, that was like a 'holding' ward until a place was available

Ratfinkstinkypink · 28/12/2023 10:56

I am so sorry you are going through this, we went through similar when my 55 year old DH was admitted after a stroke and was already palliative with cancer. The lack of care was astounding, right down to the basics like not giving him his medication and putting food/drink out of reach of a man who was now unable to use one side of his body due to the stroke. He was also unable to speak to ask for help. I brought him home in the end but it is not a route I would recommend.

user14699084787 · 28/12/2023 10:52

Spudlet · 28/12/2023 10:45

Could be anything I suppose - the tumour, the steroids, the UTI, the lack of steroids, the sudden move to hospital. God alone knows. Poor man.

It makes me so cross that end of life care is like this.
All the opponents of assisted dying always pipe up that we can manage pain and distress with modern palliative care, but the reality that I’ve had a ringside seat to in the last 18mths is dire.
Why can’t we provide decent pain relief for the dying anymore. It’s inhumane. My relative was being “kept comfortable” with liquid paracetamol, basically calpol!

Original poster
Spudlet · 28/12/2023 10:45

Could be anything I suppose - the tumour, the steroids, the UTI, the lack of steroids, the sudden move to hospital. God alone knows. Poor man.

OP posts:
Origamiheaven · 28/12/2023 10:44

overwhelmed2023

Why a complaint? Try communicating first that family not coping and he needs further assessment for the most appropriate care, and a palliative rv

PALS isn't just for complaints. The service is there for acting as patients and families advocates

user14699084787 · 28/12/2023 10:43

Could it be steroid psychosis causing hallucinations etc? My relative had a brain tumour and they gave high dose of steroids to try and shrink it before (unsuccessful) surgery. It sent them totally loopy like you describe.
You’re also not supposed to stop taking steroids suddenly because of similar reaction I believe.

DyslexicPoster · 28/12/2023 10:43

I'm so sorry, this is very sad. I think maybe think about pals if all else fails. You need to complain at some point anyways about the meds. Whilst it's true that the hospital is only there to provide medical care, the fact there's no onwards bed isn't yours to fix either. You can't magic up more hospice places. Neither can you keep him safe at home. Just keep doing what your doing.

beetr00 · 28/12/2023 10:41

lots of info here @Spudlet

https://www.nhs.uk/conditions/social-care-and-support-guide/care-after-a-hospital-stay/arranging-care-before-you-leave-hospital/

Also please double-check the medication the hospital has prescribed and is administering to him.

Some hospitals have social workers on site, they may be useful as an extra voice to your concerns.

You will have to be determined and tenacious to advocate for your DFiL.

Do not be fobbed off, good luck 💐

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