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.

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.

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 .

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 😢

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.

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.

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 .

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?

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.

Not acceptable but it happens.

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.

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.

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