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.

Sorry to read of your poor fil’s condition. It sounds like as a family you’ve done your best to have him at home and that’s no longer an option. He needs 24 hour professional care to keep him comfortable and deal with his symptoms. Even with a care package in place at home there would be many hours between visits. A blocked catheter is agony. His pressure sore will worsen and also he’s at high risk of a serious fall.

I think you are right in refusing to accept him back home as with the best will in the world you can’t provide the care he needs. A respite stay in a nursing home might be an option while waiting for a hospice bed. Ask to speak to a hospital social worker and make it clear that bringing the poor man home isn’t an option. It’s up to them to find a solution that’s in his best interests.

He doesn’t have his door key
Good work.
Can we carry on refusing a discharge from hospital?
My take is that if you couldn't, they sure as hell would have let you know by now, as it sounds as though they are desperate for the bed.

They can't make YOU (any of you) do anything. It's fairly unlikely that they would just leave him outside his own LOCKED front door in late December.

So he either stays put or they find somewhere else for him to go.

It's an awful situation and everyone here is just backed into a corner.

We were able to arrange respite at the local care home for DF recently. We contacted the social work dept because hospital discharged him and would not re-admit him despite uncontrolled pain. His is a different condition, but it was a great help.

Ask if fast track CHC is an option to get him a place at a nursing home.

Where we live hospice care is only for symptom management only so if his symptoms were manageable they wouldn't take him.

It sounds like a nursing home would be the next best option.

If not hospice, then nursing home. It’ll be full of dementia patients, but they’re geared up for the nursing needs of the elderly far better than hospitals are.

if he has an indwelling catheter, he’s at elevated risk for UTIs which will cause confusion. On top of whatever confusion is being caused by the brain tumour.

have you done all the admin work? Attendance Allowance, CHC application? If he’s so near the end, LPA not much use - they’re taking nearly 6 months to process.

His not having a key is a good move. They’ll quite happily leave a vulnerable old man in an empty house, but they’ve not yet taken to dumping them in the street

You are right to refuse. They care about bed managing. They don't seem to link anything up with treatment.

My Dad died in march. He had stage 4 pancreatic cancer which was a catalogue of awful failure in how he and we as a family were treated. The cancer caused a stroke and he was in the stroke ward. They were trying to feed him as normal despite the cancer being so advanced he couldn't eat and I was worried he'd choke.

All they were looking at was the stroke. They were trying to discharge him when I arrived (I live away). And I had to make my mum face facts and said no, it was not safe. He was dead 3 days later.

His treatment was utterly awful. It took me having an undignified meltdown at the desk and telling them to find a bed where he could die with some dignity away from the stroke ward (which is what the doctor promised when he finally got properly assessed) before they did anything. A doctor finally said he was too ill to be discharged....after the discharge manager had told me he wouldn't get a hospice place, and I spent a day phoning around nursing homes for a place he could die, at the hospitals suggestion. I should never have been put through that. And neither should my Dad.

All they care about is bed spaces. You fight for him and for you.

You are right to refuse and you can refuse to have him back home. Don’t feel bad.

All they were looking at was the stroke DH currently has 4 different hospital teams looking at different bits of him, all apparently oblivious of the other 3.

@MereDintofPandiculation I'm sorry you're going through it. Yes, nothing is joined up. It's horrendous that we have to fight when we are already dealing with so much.

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.

Yes, you can continue to refuse to have him back home.

He needs to either stay in hospital or go to a nursing home or hospice for professional care 24/7. Don't feel bad about it, in refusing to allow him home you are doing the right thing for him.

Thank you everyone who has replied. I’m so sorry so many of us have found ourselves in the same place.

I don’t know what CHC is - DH and BiL have lasting power of attorney and whatever the quicker version is (there are the two kinds, right?) as they sorted all of that out at the point of diagnosis.

DH has just had a call from the in-patient occupational therapy team, they are now assessing him for dementia as he is insisting that he has two daughters (he doesn’t) and that his late wife is still alive. They are going to do a fall risk assessment too. DH did so well at holding firm about not being able to cope any more. He isn’t diagnosed but we’re pretty sure he has ADHD and this whole situation is preying on every weakness he has - no routine, no control, phone calls, being put on the spot. But he loves his dad and is doing it for him. I’m so proud of him.

The whole system nhs and social is in crisis so basically they'll be desperate to discharge and have family care for people.
Stand your ground. Refuse the discharge. Tell them he doesn't have keys or access to his house. They'll eventually realise you are serious and not going to budge

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...

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.

I’m a sports massage therapist, and one of the things I have to look out for is the nocebo effect - ie, by treating a person and not referring them on, am I preventing them from accessing a more effective level of care? If we took him home now, that’s what we’d be doing - managing poorly and stopping him from accessing the level of care he actually needs.

Poor man. He’s a gentle soul and he’d be horrified if he knew what he was doing.

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.

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

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.

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.

The thing that makes me angry about the fall is that he was repeatedly trying to climb out of bed, and clearly able to do so, but the rails were left up. So he had further to fall than if he’d just rolled out of bed.

DM used to be a nurse so I know from her that it’s better to fall from a lower height, if you can’t stop them trying to leave.

re the steroids - DH listed all his medications on admission to the triage nurse, so that got lost somehow. When he queried it with a ward nurse, she apparently smirked and shrugged at him and said the dr hadn’t prescribed it. And now he’s talking to dead people.

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

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.

Oh and sorry: he does have a uti and they’re trying to treat it. Which is no doubt not helping (the uti, nnt the treatment).

I’ve given you the barest details
of how he was treated. It was appalling: and at least one nurse on the ward encouraged us to complain.