Refusing hospital discharge for palliative patient

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.

Unless maybe too agitated to settle for the scan

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

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.

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.

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.

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.

@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

Delirium

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

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.

Do you have a social worker,? Ours was the point of liaison between all the competing funding bodies. This end bit is terrible, with everyone trying to get away with not paying for care (the authorities). Keep pushing for a nursing home or hospice bed, although round here hospices are for the very very end, they do support longer end of life care as well. Hugs to you.

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

I would imagine a urology ward would have definitely checked for a uti. That's their thing.
However they are less used to social than on a medical ward though more so these days as most inpatients are elderly and not coping.

Hospitals want to discharge when they have no more treatment or tests that are hospital specific - it’s not that they think he’s fit for discharge home or that you can look after him, that’s not their problem, it’s just that there is no more they can do for him. Not that this changes your problem at all, but hospitals are not nursing homes and can be very protective of their beds.

Are the hospital discharge team involved? He clearly can’t go home alone so they should be arranging an assessment and looking at where/what next.

If your father would be self-funding the hospital may have an organisation who helps find a suitable local home - something like Carehomefinder but with a local rep who will know where has the ability and space to look after your father.

And call the hospice again, and cry again.

Contact PALS (patient advice and liason services) urgently for the hospital concerned. Contact details will be on the hospital website

They may not be managing anything more medically for him now the catheter is sorted and no other specific treatment or symptoms management needed. But now he has social issues as obviously not coping under previous home setting.
He'll need social assessment with a SW and if he meets criteria CHC fast track into care. If he has specific symptoms like pain/ nausea / seizures etc palliative care can help and possibly hospice care. I think an inpatient palliative care rv is appropriate as he has changing symptoms and they may be able to help, and he's on dexamethasone.
Re the steroids and fall- maybe as it was the long weekend it got missed by the dr / pharmacist ? And it depends how many days he missed, it's hard to say if the increased confusion was down to missing it as it hasn't improved - has he had a repeat head CT scan? Re the fall, unfortunately even with 1:1 confused patients will fall even in a hospital setting but falls protocol is followed and it is datix - ed by the NS. If it was me I would have a chat with the ward manager first but I work in the system so know all falls cannot be prevented.

CHC fast track is not a means to get a placement, it is for people who are at end of life. The Fast track system is being misused by the NHS, which sadly leaves many people months down the line having to move Care Homes placements as they do not accept local authority rate.

OP, refuse to accept his discharge, tell the nurse you will not provide a caring role and it be unsafe. Also ask for an adult social care assesment from the social work team in the hospital.

Start using phrases like.. duty of care (theirs).. unsafe discharge... falls risk..
Stay strong.. absolutely refuse to have him home under ANY circumstances.. it is for the hospital to sort out hospice , care home etc..

Have they checked for a UTI? Verify this as hospitals can be very dismissive of family concerns...