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

It absolutely isn't fit for purpose. I say this as someone who worked in it for 30 years and who now has experience of a match better European system.

OP, I hope his transfer home goes smoothly and that you get all the support your family needs

The ambulance is on its way and should be with us in about an hour.

Will update when we are home, thanks for everyone’s support, I am definitely looking into the suggestion of a letter from the hospice.

Ask for the bed manager they might get everything in place to get the bed back. I’m so sorry for you and your husband. The least we should be able to provide is a dignified death at home if that’s the patients wish.

Does he have a ReSPECT document in place?

I’m sorry posted before I read the full thread

So glad to hear this.
Does he have a ReSPECT form in place? It should be clearly documented that he does not wish to go back into hospital again.
I hope he gets home safely and you can enjoy family time together.

This is awful. Thinking of you both and hoping you can both be comfortable soon in your own home.

I lost a close family member last year. Was so disappointed that we couldn't get them home to die, which was their wish.

The hospital palliative care team did little to expedite discharge.

What made it worse is that i'm a HCP and have been on the other side many times. Have seen colleagues pull out the stops to get a hospital bed delivered the same day and know it can be done.

I guess it may be area dependent.

Thinking of you OP and hope he's safely home.

I’ve reported this awful, insensitive, thoughtless post …however mn deem it’s ok to leave it in 🤨 Honestly despair at you mn, clearly no compassion at all, same as this poster.

I would strongly recommend contacting the social work team at your local hospice - they will advise and advocate for you and are very used to this kind of situation.

Someone immobile, at high risk of pressure sores and likely in significant pain will not be able to access a taxi.

He's not being held hostage, he's waiting for a scan.

How is he not being held hostage? He wants to go home, now. He can't because the scan that the oncology team have said he doesn't need hasn't happened yet and without it the medical team won't discharge him. The private ambulance won't take him without the official discharge. A more mobile patient could exercise their right to leave by simply getting up and leaving. His rights and wishes are being overridden because he physically can't do anything about it.

It's no help to OP but sadly I've seen this a lot of this sort of nonsense in hospitals after an A & E admission. The system works against the patient and few staff seem to have the authority to stand up to it.

Hugs to you OP 💐

Sorry to hear this so sorry for your loss.

So sorry you and dh are going through this @Evenstar

As others have suggested a Respect form/ADRT may be helpful to document his wishes re admission avoidance. I'd think the hospice care can help you with that.

What a lot of stress, Hope you and your husband have a restful evening OP.

Absolute ignorance right there.

You have clearly not had any experience of caring for or trying to transport terminally ill people.

It doesn't mean that they simply cannot walk so just sit in a wheelchair. It often means that they can't sit, can't lie down comfortably either, need moving by several other people to try and avoid pressure sores. Some cannot feed themselves or communicate much either.

My DH was in just such a state until he died recently. He was a 6ft 2inch man too.We definitely needed the specialist equipment in an ambulance to move him around at the end.

Stop with the smug and ignorant comments. "Just get a taxi" sounds very simple, but for patients who can do literally nothing for themselves it absolutely isn't. They can't just hop in and sit there.

Plus, you are insulting our intelligence. Do you actually think none of us would ever have thought of that little nugget of wisdom? We'd have done it if at all possible.

@Evenstar contact the palliative care team who should be able to advocate for your husband with his medical team. Also contact PALS and get them involved

You may be right. The trouble is many of these awful situations tend to occur out of hours and it's almost impossible to contact anyone who might be able to help. Tbh it's pretty damn hard even during working hours. The palliative care team at the local hospice might be able to help and they often have a 24 hour phone service but you need to have had a referral or some sort of previous contact with them. The stress of trying to arrange any kind of transport/care/nursing out of hours when the NHS system is doing its best to thwart it, is horrendous. Many staff are too afraid to deviate from their script even if it means the patient suffers as a result. Staff who do have the courage to override the system for the benefit of patient sometimes end up being sued. Absolutely heartbreaking for all concerned.

Very sorry you've had such a struggle OP.

NHS training constantly reminds us that patient wishes are extremely important and should be respected.

I wonder why they weren't in this case!

I've reported batchcookbabe too. Glad to see it's not just me that thinks it's an insulting comment. In the context of this thread, their comments are crass and ignorant. I got the same response from MN - comment allowed to stand.

They should be ashamed of themselves. If ever there was a case for reading all of the OPs posts being mandatory, this is definitely one.

I hope you are safely home now @Evenstar

Sending lots of love and strength in your journey ahead 💐

The OPs hubsand may not have two days. The NHS, especially A and E aren’t great at recognising when going for the max intervention and treatment is not in the patient’s best interests.

I agree. The NHS was absolutely superb when DH had cancer. His whole treatment and follow up care must have cost at least half a million by my reckoning.

I’m so glad. My thoughts are with you and your husband. MN is a great place if you need to talk to someone in the middle of the night x