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

No, I agree it wouldn't sort everything out, but until these things are fixed I dont see how the rest of it can get any better.

When someone is terminally ill most doctors don't seem able to adjust from attempting to cure to concentrating only on comfort. This was explained to me by a palliative care consultant which is why I suggested earlier that you try to find one. They can cancel all the scans and investigations and prescribe whatever is needed for pain.

I had this with my FIL aged 97 with terminal heart failure. They restarted treatment as he'd stopped deteriorating but he was now bed bound and couldn't do anything having been independent at home before. Cardiologist said he'd given consent for treatment but the doctor hadn't explained what treatment would be given and the fact it probably wouldn't work. As I retired GP who has done a lot of palliative care I had to suggest to him that as doctors we have to have the courage to inform patients fully and be upfront in saying this isn't going to work and we are just going to keep you comfortable. It's not an easy conversation to have, and this doctor was a cardiologist who wanted everything done.
He was then referred to palliative care and died peacefully.
OP I'm glad you're home. I looked after my husband at home when he was at the end of life. It's much more relaxing than being in hospital.
I always used to tell my trainees that we get one chance only to get end of life care right so you give it your all and get it as right as you can.

Evenstar I am glad to read your husband is now home, I hope he is comfortable and that you have been able to get some rest.

DH has decided that he will not accept any further hospital admissions for anything. We knew from the beginning that his care was palliative and as a family we are at peace with this, it is no longer in his interests to be admitted and at the suggestion of the hospice our GP will be marking him as not for hospital admission.

@Evenstar how are you feeling today?

Interesting that the GP has said that. When dad was ill, the GP just said everything was the hospital decision. Things may be better now though in terms of the way those things link together.

@Pippick the whole process makes me wonder if the hospital doctors aren't thinking of being sued by patient families, but are thinking more of some kind of internal investigation finding them at fault.

I said this several times when dad was dying - I do not understand how we are supposed to function in a system that cannot admit when a patient is terminal.

Cardiologist said he'd given consent for treatment but the doctor hadn't explained what treatment would be given and the fact it probably wouldn't work.

This was a similar experience to mine when my DH was dying. He had cancer, then full blown C Diff and I was with him 24/7 at the hospital for the last fortnight. A consultant asked if he was willing to try antibiotics into his neck and he vaguely nodded.

I cornered consultant in the corrifdor afterwards and asked why they were even thinking of this as DH was clearly dying. Consultant agreed that yes he was, there was no hope but he had 'agreed'. I pointed out that DH didn't recognise me or any other member of his family at this point and if there was a 0.0001% chance this treatment would work I'd be begging them to do it. It didn't happen, in the end. I do think there should be more emphasis on reality, as @Musicaltheatremum points out. It helps noone if there isn't.

@Evenstar I'm sending all possible good wishes and strength.

Social care provision, difficulty in finding which is a huge cause of bed blocking, is not part of the NHS.

Yrs a former hospital social worker
(ed for clarity)

It is not at all unknown for families to support all medical decisions then turn round once the patient has died and blame the hospital. Grief and misplaced guilt can do funny things

@Snowyowl99Oh wow I’m so very sorry for your loss. I have a 25yr old nephew with severe, acute mental health issues who’s currently being failed massively by the NHS. 💐

@EvenstarI’m really sorry for your DH’s experience, what you’re all going through and for the fact that your thread has been somewhat derailed. I’ll be thinking of your DH and you all 💐

At first I wondered if he was palliative but not end of life as yet, the fact that they seemed hell bent on giving him a scan. Then I saw he had actually been prescribed what appear to be EOL meds which are at home. I work for the NHS and though they can be amazing with things like heart attacks and strokes, sometimes I can't believe the frequent lack of communication and common sense! I'm so sorry OP that you and your husband have had to go through this. I'm glad to read the ambulance is finally on its way. I hope you are now at home 💐

It also fails people every day. It’s fucked.

Agreed, but the post I was responding to also referred to GPs and hospices.

I also speak from experience.

And there are huge outpatient delays that aren’t related to bed blocking.

I don’t think anyone is saying that there aren’t lots of other problems in different areas, or that lots of staff aren’t struggling, that’s kind of our point

And, for clarity, valid criticism of the NHS in its current state isn’t the same as saying the principles of the NHS aren’t important and worth fighting for

I'm so pleased he's home and peaceful. That must be a comfort to you all.

So sorry to hear that too . I hope thinks start to look better for your poor nephew