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.

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

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.

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.

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.

@Spudlet good luck with it all

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.

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.

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

@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.

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.

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.

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.

Sadly this is nothing new. It's an almost identical scenario to that of my DF 17 years ago. He was lying in the bed talking to dead people, didn't know me and was in a nappy with a drip into his groin and they cheerfully told me that he was discharged and I could take him home. I had a total meltdown and asked them if they were insane as I wouldn't even have been able to get him out of the door. It's was the consultant's decision I was told and as it was Friday he wouldn't be back in until Monday. I said that I'd talk to him then. DF died on the Sunday. OP, he sounds very much like he's end of life. I have to say that despite the sadness, there was immense relief that I didn't have to fight for my DF anymore. My thoughts are with you.

Oh and agree with asking if there is a palliative care team. We saw the most wonderful palliative care consultant when it became clear that dad was not going to recover and she was so kind. She listened, she explained things so that we all were left with no doubt what was happening, she spent time with dad doing things like cleaning his teeth and got a nurse to give him a shave. We also had a visit from the hospital's McMillan nurse who was rushed off his feet but again, professional and expert.

I'm so sorry you're going through this. When DM was in hospital her GP told me in no uncertain terms was I agree to her being discharged and to make it clear that I couldn't care for her as it was the only way she would get the care she needed. When I visited her she was drifting in and out of consciousness and calling for her cat but the doctor was still saying they would be discharging her in a couple of days.

The situation was different in that she was dying of heart and kidney failure and she ended up being moved to another ward as she was too weak to move to a hospice but it was obvious to anyone she wasn't fit for discharge home and never would be.

DH and BiL will be meeting someone from the palliative care team later today. So we’ll see what they have to say. We have a plan and if needs be, I’m here to be FaceTimed in as the tame(ish) dragon lady. I can’t go as there’s no one else to look after DS.

From the numerous calls we’ve had today, I’d say there’s been a bit of action. Of course time will tell on that front. But at the very least FiL sounds more comfortable, so that’s something - assuming that’s true of course.

We had an identical experience @Pigglycat
GP prescribed the end of life syringe driver but getting anyone to administer it proved impossible. Unfortunately it took nearly 6 weeks for my relative to die. I’m pretty traumatised by it. I know they were in horrendous pain.

My parents both died young from cancer, at home, over 20 years ago. They had excellent pain relief and just drifted off…i dont know what’s happened to make the district nurses/nursing homes so reluctant to administer decent pain relief.

My parents both died young from cancer, at home, over 20 years ago. They had excellent pain relief and just drifted off…i dont know what’s happened to make the district nurses/nursing homes so reluctant to administer decent pain relief

Harold Shipman happened.

Had a similar situation with my grandad and they ended up discharging him, he fought hard to return home and they took him very seriously. He ended up having a live in carer for the last couple months of his life and he got his wish to die at home. He died very peacefully in his own bed.

He can’t return home unless there is a care plan in place and if family refuse to provide that care then carers need to be provided (ideally a live in carer if there’s space to do so) but they will take his wishes seriously and do what they can to make it happen.

So sorry to read your story. My DF is dying of a brain tumour currently and the palliative care team have been amazing. They should assess capacity and then if there is no LPA I understand a senior doctor will take on responsibility for making decisions. They're then likely to do a fast track continuing care application (I think that's what it's called) which should generally be processed within 48 hours if it's for end of life care. It can then pay for care at home or care at a care home. In my Dad's case it ended up being a referral to a local hospice as he is deteriorating quickly.
I'm just so sorry for what your poor family have gone through. I hope things get better from here

www.mariecurie.org.uk/help/support/terminal-illness/care-needs/continuing-healthcare-assessment

It's this I'm referring to

Real quick update - the palliative care team have seen him, and we have a plan A and a plan B. And he is back on his required medication and feeling a little better, although still a bit vague and confused at times. Right now, he is safe and being looked after, and DH and BiL should now be able to step back from being carers and into just being his sons.

A huge thank you to everyone who posted, and I’m so sorry to everyone going through similar.

Glad you've made progress @Spudlet . Hope you can all regroup a bit and get some rest.

We have just had a similar situation with my mother in law. She has severe dementia and was admitted to hospital in October after a fall. She didn't hurt herself badly, but had become extremely aggressive and agitated. She had been in extra care housing for some time and the manager had already arranged for her to be assessed for residential care because the carers there could not meet her needs. While she was in hospital, the manager said that she would not accept her back because she needed 24 hour care . We had an ongoing battle width the council's social worker and placement officer who wanted to put her in a real shithole of a homes, and said she needed residential rather than nursing care. My husband has POA and refused to accept the placement offered. After a battle of five weeks with the hospital getting increasingly angry because she was in an acute bed when she was medically fit for discharge, it was agreed that she needed nursing care. It took a further three weeks for the council to come up with a suitable placement, and the hospital threatened a couple of times to discharge her back to her extra care housing flat. My husband pointed out that she didn't have a key, and the carers would not be willing to look after her. Once he had seen the home that she was offered, he accepted the place late that afternoon, and then received a phone call at 8.30 am the next morning to say that they had just taken his mother to the discharge lounge. At the hospital's request when she was admitted, she had only worn hospital gowns, and her clothes from when she had arrived had been disposed of because they were badly soiled. She had no slippers because she can't walk. So they had left a 93 year old woman with severe dementia sitting in a wheelchair in a public area wearing a hospital gown and socks, sitting on an incontinence pad, and with just a blanket covering her. There were so many failings at this hospital and her care was a disgrace from start to finish, but yes, you can definitely refuse for someone to be discharged on grounds of safety!