Refusing hospital discharge for palliative patient

Spudlet · 2023-12-28T09:40:35+00:00

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.

CoatOfArms · 01/01/2024 12:22

That's sad for your FIL but good news. Hopefully they find a good placement for him soon.

Original poster

Spudlet · 01/01/2024 10:27

He won’t be going home. On the recommendation of the palliative care team, who are assessing his capacity while we wait for a fast track funding decision. They recommend a nursing home as the most appropriate place to now meet his needs - even a 24 hour care package isn’t likely to be enough at home.

OP posts:

gratefulforcousins · 01/01/2024 07:34

If its his house, you can't refuse him entry to it. What you can do is refuse to provide any further support for the situation and make it clear that he would be on his own. It doesn't sound like he is well enough for home but desperate times often mean desperate measures.

MereDintofPandiculation · 30/12/2023 13:14

Growlybear83 · 30/12/2023 11:21

I realise it's standard practice in many parts of the hospital but surely not acceptable in the discharge lounge, expecting her to travel to a nursing home like that?

Show quote history

Not acceptable but it happens.

GETTINGLIKEMYMOTHER · 30/12/2023 12:15

You can prevent him going home by making sure he has no house keys with him (if he has, take them away) ditto that nobody will be there to open the door if they try to bring him home.
Drastic I know, but sometimes it’s a case of needs must.

Growlybear83 · 30/12/2023 11:21

MereDintofPandiculation · 30/12/2023 11:13

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. Standard practice I think.

I realise it's standard practice in many parts of the hospital but surely not acceptable in the discharge lounge, expecting her to travel to a nursing home like that?

MereDintofPandiculation · 30/12/2023 11:13

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. Standard practice I think.

wudubelieveit · 30/12/2023 10:09

Cattymonster · 30/12/2023 09:37

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.

It wasn't only Harold Shipman. It was also fallout from the 'Liverpool Pathway' (Google if you've not come across it).

My experience (with two elderly dying relatives in 'homes') is that staff are not experienced in setting up syringe drivers and will try almost everything to avoid doing so. (Of course there will be exceptions to this, but sadly we didn't manage to find those 'homes', despite more effort than I can even begin to describe, and despite one of the homes being a hospice.)

Part of the issue, in my experience, is that staff become hardened to seeing pain and distress and begin to treat them as normal and therefore acceptable.

Shouldn’t be like that though, our hospice did regular training sessions for local nursing and care homes on all aspects of palliative care, syringe driver training included. It should be a mandatory part of the care home licence that they have staff qualified to provide appropriate care at this stage of life but I won’t hold my breath as some seemed to faff around with providing even the basics like appropriate beds, chairs and manual handling equipment. Some homes are excellent but some need a lot more education .

wudubelieveit · 30/12/2023 10:08

Cattymonster · 30/12/2023 09:37

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.

It wasn't only Harold Shipman. It was also fallout from the 'Liverpool Pathway' (Google if you've not come across it).

My experience (with two elderly dying relatives in 'homes') is that staff are not experienced in setting up syringe drivers and will try almost everything to avoid doing so. (Of course there will be exceptions to this, but sadly we didn't manage to find those 'homes', despite more effort than I can even begin to describe, and despite one of the homes being a hospice.)

Part of the issue, in my experience, is that staff become hardened to seeing pain and distress and begin to treat them as normal and therefore acceptable.

Shouldn’t be like that though, our hospice did regular training sessions for local nursing and care homes on all aspects of palliative care, syringe driver training included. It should be a mandatory part of the care home licence that they have staff qualified to provide appropriate care at this stage of life but I won’t hold my breath as some seemed to faff around with providing even the basics like appropriate beds, chairs and manual handling equipment.

EmotionalBlackmail · 30/12/2023 09:48

Yes, both Shipman and the furore over the Liverpool Care Pathway have a lot to answer for. Relative who died 20 years ago had a syringe driver, pain kept under control, loss of appetite etc allowed to follow its natural course, unconscious for the last week or so.

Cattymonster · 30/12/2023 09:48

user14699084787

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.

I'm so sorry that you had the same experience It's frightening, and a disgrace 😢

CoatOfArms · 30/12/2023 09:46

My dad was on a syringe driver for the last couple of days of his life and it was absolutely the best thing for him. He was no longer agitated and shouty, his pain was clearly controlled and he did just drift away in his sleep overnight.

That was in hospital though, with dozens of nurses and doctors and consultants in the building. I do remember not every nurse on the ward was qualified to manage the driver, and increase what he was getting, it was carefully controlled and only prescribed on the say-so of a senior consultant. I can easily see how in a care/nursing home, or in the patient's own home, this can be difficult. Seeing someone in the last days of their life is bloody awful. But it helped me comfort my mum by pointing out that the driver meant dad was unaware, he was away with the fairies on whatever drugs were going into him, he was calm and not in pain. By that stage of someone's life, it's as much as about the people left behind. Nobody wants their last memory of a loved one to be them in pain and distress.

I hope they can keep your FIL as calm and pain-free as possible, @Spudlet .

Cattymonster · 30/12/2023 09:37

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.

It wasn't only Harold Shipman. It was also fallout from the 'Liverpool Pathway' (Google if you've not come across it).

My experience (with two elderly dying relatives in 'homes') is that staff are not experienced in setting up syringe drivers and will try almost everything to avoid doing so. (Of course there will be exceptions to this, but sadly we didn't manage to find those 'homes', despite more effort than I can even begin to describe, and despite one of the homes being a hospice.)

Part of the issue, in my experience, is that staff become hardened to seeing pain and distress and begin to treat them as normal and therefore acceptable.

Growlybear83 · 29/12/2023 20:46

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!

Sohereitissuddenly · 29/12/2023 20:08

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

Original poster

Spudlet · 29/12/2023 17:32

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.

OP posts:

yummyscummymummy01 · 28/12/2023 21:29

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

It's this I'm referring to

yummyscummymummy01 · 28/12/2023 21:27

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

Lovemusic82 · 28/12/2023 19:57

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.

hatgirl · 28/12/2023 19:51

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.

user14699084787 · 28/12/2023 15:59

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.

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.

Original poster

Spudlet · 28/12/2023 14:00

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.

OP posts:

PinkSparklyPussyCat · 28/12/2023 13:25

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.

CoatOfArms · 28/12/2023 13:09

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.

Wetweatherandmud · 28/12/2023 13:08

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.