Aunt with MDS hospice to care home

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Hi all, my aunt has MDS and has needed 1 or 2 weekly blood and platelet transfusions for the last year. She recently decided to stop treatment and requested to go from hospital into a hospice, which happened.

She has been in the hospice now for 3 weeks (it has been at least 4 weeks since she had any transfusions) and the hospice medical staff told me they are considering moving her to a nursing home as .... Well, they put it quite delicately... But my aunt shouldn't still be here and they are supposed to provide end of life care for people really at the end of life. My aunt, if anything is much perkier, eating more food, is chatty with the staff etc.

I know my aunt will not want to go into a nursing home (I don't handle her care so it won't be influenced by me anyway) but I wondered if anyone has experience of a similar situation?

Can they insist on moving her to a nursing home?

She definitely isn't going to recover... So it seems a bit mean to move her to a nursing home just because she is lived longer then anyone expected, but I do realise that hospices must have limited resources etc....

Any experience or knowledge around this would be welcomed.

I don't have any actual advice to offer, but in his book Being Mortal, Atul Gawande talks about how hospice care often leads to better outcomes than more hospital treatments; so people live longer. He uses it as an argument for not doing so much invasive surgery and focusing on quality of life for older people. So your aunt's experience may not be so rare.
I imagine other people on this board may have more helpful suggestions to post - but I didn't want to read and run.

I work in a hospice (not in a medical role though). In our hospice we have 36 beds serving the whole county. Sadly many people who would like to pass away in the hospice are not able to due to shortage of beds and many more who require a stay for symptom control also can't access it. If your aunt is looking like she is improving in her condition even for a short time the medical staff will likely be suggesting that she frees the bed for a period of time, with the offer that she can hopefully return when closer to end of life.
It's so tricky balancing the needs of all patients. But if your aunt is comfortable in the hospice I can see that it would be upsetting for her to have to move. I'm sorry that you are all going through this difficult time. Do talk to the medical team to understand what her options are (or encourage whoever is closest to her to do so) so that you understand if it's merely an option or something that they are pushing for. Hospices are set up to provide end of life care suited to each individual patient as they wish to be cared for. Whilst they have suggested this as an option it may not be the only one.
I do hope that your aunt is able to spend her remaining time comfortably and as she would like.

Hello. My husband's great aunt D, aged 102, was in a hospice last summer. I remember on mil's birthday in mid-July, mil was talking about her only having days left and how much she was going to miss her.

However, great aunt D's health improved remarkably - so much so that she had a little 103rd birthday party of her own in the garden of the hospice at the end of July. After that she was moved to a care home. She lived another two months and died at the end of September. Had she stayed in the hospice she would have been there for a total of nearly 4 months I think ... which does feel a bit wrong when you consider the scarcity of hospice beds.

Thanks everyone for your replies. All really useful perspectives, I appreciate each of you taking the time to reply. It must be a difficult position for the hospice too.

Absolutely, it's a constant challenging, but they are dedicated to making sure that the patient gets the care that they want the way they want it, so do explore all of the options available with the medical team as they may be able to accommodate her wishes, or even suggest some that haven't yet been discussed.

I used to work in a hospice and ultimately yes, they can evict her but we never actually had to do this.

Hospices are short stay (usually <10 days) for people in crisis. If the person stabilises and their care can be managed elsewhere - either at home or care home, they will be moved on.

It's fairly rare to meet someone who actually does want to go to a care home so the hospice will have dealt with this many many times before and do their best to make it as seamless as possible.

Hospices are so nice that generally people do want to stay (unless they really want to be at home). Unfortunately they are all tiny units serving very large populations so if they let everyone stay, there would be no hospice for anyone else and they would basically be a very overstaffed care home.