Refusing hospital discharge for palliative patient

[Spudlet]

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.

Because they are failing at their duty of care.
And it’s often one if the few ways to move the needle in the right direction.

It's true, but if they didn't at first realise he was agitated enough to climb out they probably thought it protective - obviously he now needs a hi- lo bed close to the floor and close supervision.
A uti will have cause delirious on top of the baseline confusion from the tumour. Has he had a repeat CT head? He will have likely had one but might be worth asking them

Delirium

DH told them he was trying climb out. They ignored him.

He hasn’t had a CT scan AFAIK. and no social worker at this point. I’m trying to filter information so that DH and BiL don’t have to. Sorry if I seem a bit brusque on here 😳

@Spudlet im sorry.

My FIL was treated in a similar way. The difference was that my MIL didn’t fight the way your DH And BIL do.
They were still talking about surgery for my FIL for what was a minor issue when he was at the end if his life and should have been under palliative care :(

The situation is abysmal

CHC is continuing health care. PALs are a complaints mechanism and rarely act with urgency.

Look up adult social services for your local council as it will be their social workers assessing discharge. You need a team of carers in place if he is to come home. They would be able to access a care agency that could start quickly and also things like a hospital bed with an air mattress. The bed sore would still need dressing.
and yes stand your ground don’t become a full time carer but stay loving family members.

Sounds like you need a nursing home placement. They can fast track the funding if the patient is suspected to have 6 weeks to live or less, if not it might take a bit longer. Keep him in hospital until the nursing home. He may have to self fund the home but the social workers do this all the time, they should be able to put you on the right track.

I’d start talking to your husband and BIL about logistics- if he’s not going to go home again sorting out the house. Letting a neighbour know so they can keep an eye on it, making sure it’s maintained. Go round every so often to check it. Empty the fridge freezer, getting together important paperwork.

It's a judgement call but if agitated it's almost impossible to prevent a fall even with 1:1 - we do get 1:1 for our patients but it doesn't come instantly there's usually a wait. We have patients on a low bed and floor protection sometimes. Nurses have protocols for falls and falls prevention so ask how they are managing it now.

I’m sorry you’re going through this OP. Horrible for all of you, but most of all your poor DFIL.

Dont be persuaded into having him home, he needs proper palliative care.

He should have a CT scan if not already had. Ask for palliative rv

Unless maybe too agitated to settle for the scan

We had a similar situation, also the result of a brain tumour, a couple of years ago.
We had the hospice team, hospital #ocisl worker etc all involved but the turning point was when we phoned the hospital switchboard and asked to speak to the palliative Consultant. His secretary arranged for him to come and see us bedside. Our relative very swiftly received what they called an 'assessment' place in CHC at a nursing home of our choice (30 seconds from home). He was moved the next day.

The 'assessment' placement was initially six weeks - sadly we only needed 3 weeks of it.

I hope you manage to get sorted and things are peaceful for you in this difficult period.

I know this sounds awful, but I’m hoping he dies soon. Not because I want rid of him, but because what he’s going through is so awful. You wouldn’t put a dog through it. Poor, poor man.

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 💐

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.

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.

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

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!

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.

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

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.

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.

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.

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.