Hospice care

I’m after some advice about accessing hospice care if anyone has any knowledge please?

Is it only available through the NHS? Is it only for people that definitely won’t come out?

We’re still in this catch 22 with my dad at the hospital but they are now admitting that he can’t seem to maintain his own fluids (which I’ve been saying for weeks) and that this is not a good sign. Despite covid & a chest infection he did rally again last week and was looking like he could be up for discharge after a negative covid test. It’s been 13 days now and he is still positive but yesterday he went downhill again and went back onto a drip. They don’t have the staff to work out why this might be happening, he can’t go back to the nursing home on a drip, he can’t maintain his own levels long enough to be discharged without it. It appears that this situation will continue until something else happens. If he was able to get a hospice place he could at least have a recliner chair and be able to sit up more of the time and he might then have all the benefits of this such as clearer chest, able to eat & drink better, better mental health etc.

If not a hospice, what other options might there be, if any? He’s been in hospital for 7.5 weeks out of the last 9 and of course we’ve been paying full nursing home fees all of that time. The contract we received said we would be liable for full fees in the case of temporary hospital admission but of course nobody knows if it’s permanent at this stage. Can I refuse to pay anymore if I want to end the contract even if I don’t have Health & Welfare POA?

I would ask the consultant to write you a short note to say that dad is unfit to return to the nursing home, which you can then forward to them. Of course it will mean you then have to empty the room asap.
Do you have a local hospice?
When my dad was dying of prostate cancer, our local hospice was wonderful.

Father in law died alone in hospital.

I think you could ask for a referral to hospice care, from looking at the NHS pages on it.

It sounds very difficult xxx

It looks like this won’t be needed now. I finally managed to speak to a doctor about the situation. He actually called me so that’s never a good sign. He said that a PEG wouldn’t be appropriate as he’s now not expected to get better so the plan is to be ready for discharge with a lower level of optimization and once he is at the peak of this current cycle of infection-confusion-dehydration, then they can get him out and back to the care home. They’ll apparently make an advance care plan so that after a few days when the cycle starts again, he can be kept comfortable and people can be around him for the end.

I know this has been coming for a while and I’ve probably known more than the medics in this sense but it’s still been a blow, especially as they’ve been so sure he would be fine again.

Hi Henry’s Cat. I’m sorry to hear this. It reminds me of what happened with my Dad ten years ago. One minute we’re being told he’s virtually ready for discharge, the next we’re told he has anything between two weeks and a year to live. Two weeks later we were sitting by his bedside watching him take his last few breaths. Even when you know it’s coming, it’s still a shock.

Just make sure you’re kind to yourself about this, as guilt often rears it’s head where it isn’t wanted or relevant!

Henry’s Cat
Im very sorry to read this . Not surprised though.
Similar to the situation with my husband. My family and myself were frantically trying to find a suitable nursing home, as he was in hospital and the nursing home where he had lived force years decided they could no longer care for him. Just as another was found ( so far away it would have more difficult to visit) he died, very peacefully,with me by his side. Looking back I think relief set in, as it had been a long good bye. Followed by the grief, guilt and then adjustment.
Am thinking off you. As Charles says take care and look after yourself.