Terminally Ill DH Stuck at Hospital Don’t Know How We Can Leave

[Evenstar]

My husband is terminally ill and we were railroaded into a hospital admission by out of hours on Saturday which on seeing our oncology team today was deemed wholly unnecessary.

A consultant from Medicine was of the opinion we should get the scan we have been waiting for since 2am on Saturday morning (24 hours of which was on a trolley in a corridor) that he would expedite. He thought it was in DH’s best interest to get home ASAP. We are still waiting and when we suggested self discharging they informed us we couldn’t have an ambulance which we need to get him home. They have said they will get another doctor to come and see us but can’t say when that will be and they wouldn’t bother booking the carers for tonight as we would be unlikely to get out.

Has anyone else been in this situation? We rang a private ambulance company and they won’t take a patient without medical clearance. It feels like we are being held hostage with no prospect of release. We can’t leave without an ambulance due to his mobility

Me too. In some cases it is a political campaign, obviously.

Im glad you have an ambulance coming, OP.

Well said. It’s a ridiculous statement.
OP the priority for Care should be to get your DH home. Phone your MO, demand to see the Consultant, kick up the biggest stink possible because their duty of care must include his wishes, and if that’s to get home then that’s what they must do. I’m so sorry you’re going through this 💐

I tired to reply earlier but there was an error message.

I really hope you have managed to get home. I work in A&E and our staff would move heaven and earth to get a palliative patient home if they wished. There are always ways and means. Usually a patient that self discharges would not be able to get transport home but situations like this we would ‘bend the rules’ and show compassion. In this instance I would be speaking to the matron and have the backing of the oncology consultant and the oncology/palliative care clinical nurse specialists, they protect their patients fiercely. I’m sorry you’ve both had to go through this, perhaps another relative can take this issue up with PALS at some point so it doesn’t happen again x

Pallative care helped me when my husband had an awful infection. He got released back into my care once infection was being treated. They would not give him his full pain relief in the hospital, as they said it was too much. Hope you get sorted. We used the hospital transport.

What a nightmare OP. When my Dad was terminally ill, we did everything in our power to avoid hospital admissions as the one time he did go in, he was left for nearly 36 hours on a hard chair in A & E. He was dying, and was given no care or dignity whatsoever.

I hope your DH is soon at home in bed in a familiar place and is able to have a good ending

Elderly care was mentioned - we were told that so called nursing homes have so few nurses / anyone with medical training, that they take anyone with an issue into A&E, and this is care homes charging a fortune for said nursing care! Care is broken, particularly homes where profit comes before the person.

@Evenstar what was the reason given for the admission please?

And what was the purpose of the scan they had you waiting for?

I'm so sorry this is happening. They do the most ridiculous things. It is possibly better to keep out of the hospital at this stage obviously I realise you were given bad advice.

I know they're incredibly good at obfuscating. Although they are ever looking for is to avoid being sued. They're not thinking about the patient.
💐

Hi OP, hope you are all home safely now.

I had a similar experience with my poor dad's last hospital admission - he ended up stuck in A and E for three days and nights, with me sleeping on the floor next to him because that's the only way I could ensure he even got absolute basic care like a drink. (He had severe dementia and was resisying drinking at that point, and I remember at one point begging one of the HCPs to put him back on a saline drip - she said she wasn't willing to as it was night and she was on her own - I pointed out he was visibly dehydrating and his skin was flaky and she said "Well you'd better give him some drinks then".)

It was absolute Hell, I feel quite upset thinking about it! ALL I wanted to do was to get him home so he could die peacefully in his own bed (which he did, a few weeks later).

I seriously considered bundling him into my brother's car, and kidnapping him basically, even tho it was in no way practical to do so as we had not means to get him from the car to the house when we got back home.

Anyway, it's certainly not the fault of any individual, but lots of A and Es are in no way fit for purpose. My advice would be to think carefully about any hospital admissions and what the benefit/risk ratio is going forwards - we decided to resist any as it was so harmful to dad's wellbeing and quality of life, and that helped us come to the decision (with GP's backing) to withdraw all but palliative care at that point.

Supporting a loved one dying at home is no bed of roses, either, but it's a calmer, better experience than A and E!

Hope you get safely home soon 💐💐💐

@Evenstar PS about your 40 hours

I've done 22 hours in the hospital with my mum and I'm not joking, I was hallucinating afterwards. Went on for about two or three days, the hallucinations.

You probably won't be able to do anything for a couple of days. I know what it's like when you have to, but I really hope you've got some staffing for the next day or so. Don't get in the car if you can avoid it, I think xx

General Practices are incentivised to provide preventative and proactive care, that part isn't bollocks. Nor is it a bad thing.

I’m sorry this is your experience of the nhs and hope DH is home and comfortable.

does he have a RESPECT form detailing what care and treatments he does not want/are not appropriate?

I hope the transfer home goes smoothly for your husband @Evenstar

It sounds like you have a plan but I would recommend you ask to see a consultant in palliative care. There aren't many of them but if there's one at the hospital they can facilitate all sorts that other doctors can't.

I found the names of the health and social care specialist lawyers with out of hours cover with my first Google. I agree it's very difficult for the people in the middle of it to fight their way through it. The OPs experience today is horrendous and shocking. I hope they are at home and all is peaceful now.,

Can you call the social work team/hospital discharge. Head it as a complaint and see of they can advocate amd speed up the transfer home.

RTFT

Exactly this.
Does this person think that taxis exist that take prone people on stretchers?
🙄

Hi @Evenstar

I have read all your posts now, and I'm really sorry I asked 'can you just get a taxi?' That's on me, for not reading your posts properly.

Many apologies... That will teach me to read all the OP's posts!

Sorry if I offended anyone else with this comment too. It wasn't my intention. Just wasn't paying attention, had a few other things on my mind, and blabbed out randomly without thinking!

Forgive me. 🙏

I hope your husband is home - and is comfortable now @Evenstar

Are you going out of your way to be offensive?

There are some things it does very well. End of life care isn't one of them and co-ordination across departments also seems poor.

@Evenstar if it happens again and pals aren’t available, as to speak to the clinical site manager. They are on site 24/7 and are essentially in charge out of hours.

I’m so sorry you had to deal with this. Doctors often want to save lives and cannot deal with palliative care.

Sorry meant to reply to something else!

@BatchCookBabe oh that's sweet of you to clear that up

I thought you made such good points about the NHS and the mad things that they do with the making a patient out of healthy people! So true - you clearly have a lot of knowledge in that way.

I'm shocked at some of the replies on here - I thought perhaps me and my family had been unlucky seeing the general crazy of the NHS with terminal and elderly - it looks like a lot of you have seen the experience

I cannot understand what it is baked into the system that you cannot find common sense - and once you get in there, it is a bit like being held hostage

someone made a comment about discharge teams - what is going on there? And it seems to take them hours and hours and hours to complete their paperwork if they agree to do a discharge. And then they always try and blame the pharmacy....