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Original poster

Discharging an end of life patient to a nursing home

29 replies

Rose3434 · 20/02/2023 13:07

MIL has had multiple strokes, and they suspect an underlying lymphoma. She has been in hospital about 5 weeks now. She had a brain stem stroke last week and they called us all in to the hospital to say she wouldn't last the night.

Four days later, she is still with us, but completely unresponsive and labouring to breathe. Initially, the consultant recommended that all medical intervention should be withdrawn to allow her to slip away. The family agreed to this although another consultant involved with care carried on with the medical interventions anyway. Following further meetings with consultants, they are now back to no medical interventions to allow her to slip away. However, the consultant this morning mentioned about discharging her to a nursing home.

Is it likely that she can be as well looked after at this end of life stage in a nursing home as she is in hospital? Very concerned that moving her at this stage may not be in her best interests?

OP posts:
Brightstar84 · 20/02/2023 13:10

Firstly, I’m so sorry you’re going through this, it sounds very upsetting and traumatic.

It sounds as if a hospice might be the more appropriate option?

The likely logic around discharge is that if she’s not going to get better in a hospital bed, it is effectively being blocked for someone’s use, who could receive treatment and get better. Hence them wanting to free up the acute bed and move her to a different healthcare setting. I know that may be hard to read but that is the reality, do talk to the hospital about her discharge options though to make sure she is moved to the most appropriate setting for her needs.

Mumof1andacat · 20/02/2023 13:11

There will be nurses in the home and a doctors they can call if needed. She will be in her own room and can have more privacy that way. You can bring things from home to make her feel comfortable and hopefully have more freedom to visit as and for how long as you like.

Sunriseinwonderland · 20/02/2023 13:17

Rose3434 · 20/02/2023 13:07

MIL has had multiple strokes, and they suspect an underlying lymphoma. She has been in hospital about 5 weeks now. She had a brain stem stroke last week and they called us all in to the hospital to say she wouldn't last the night.

Four days later, she is still with us, but completely unresponsive and labouring to breathe. Initially, the consultant recommended that all medical intervention should be withdrawn to allow her to slip away. The family agreed to this although another consultant involved with care carried on with the medical interventions anyway. Following further meetings with consultants, they are now back to no medical interventions to allow her to slip away. However, the consultant this morning mentioned about discharging her to a nursing home.

Is it likely that she can be as well looked after at this end of life stage in a nursing home as she is in hospital? Very concerned that moving her at this stage may not be in her best interests?

This is what happens now I'm sorry to say. End of life patients have to be discharged to nursing homes whether its in their interests or not as the hospital beds are need for the acutely ill.
In my experience the end of life care in nursing homes is fine, she'll be seen by the district nurses.

WhiteFire · 20/02/2023 13:18

Thoughts for your family.

My MIL was moved to nursing care for her end of life care. At that point it was about making her comfortable, she could have gone home but she didn't want to. It was slightly different as this was during COVID but it was a much more comfortable place for her.

The care was funded through continuing health care.

NannyGythaOgg · 20/02/2023 13:20

I suspect she will get better care in a nursing home. They are primed purely for making sure people's care needs are met. A hospital is more about medical intervention and, particularly with an unresponsive (and therefore undemanding) patient and a busy ward, they are quite likely to provide minimal care.

Fairysilver · 20/02/2023 13:23

A hospice would be the best place not a care home.
Is there a palliative care consultant at the hospital? Ask if you can see them.
The best thing that happened when mum was near the end was a palliative care consultant getting involved. Mum desperately wanted to go to the hospice (she had full capacity to the very end) but they didn't have a bed until too late.

Original poster
Rose3434 · 20/02/2023 13:28

Thanks all for all of the information and views you have kindly given. I feel inclined to suggest to DH that he asks if a hospice is a possible option.

OP posts:
Ilovetocrochet · 20/02/2023 13:29

My mother had excellent end of life care at her care home, not even a nursing home so no medical staff there but the carers were experienced at looking after dying people and their relatives. The GP at the home prescribed pain relief medication to be kept at the care home for the district nurses to use at the end but my mum died before it was needed.

We refused to allow mum to be taken to a hospital at this point, the care home and her GP were in agreement and we were so relieved at this decision.

Springintoabetterlife · 20/02/2023 13:31

Many care homes are very experienced in providing pallative care.

OddBoots · 20/02/2023 13:35

Both of my grandparents went to a nursing home for their final weeks/days and we can't fault the care. We could be with them for much longer visiting hours than the hospital allowed and it was a calmer and much more homely place for them to be.

rose69 · 20/02/2023 13:35

my dad was discharged to a care home and I think it was better than a hospital in terms of private room and unrestricted visiting and also garden to sit in for breaks. They will proscribe morphine etc if needed. I think hospices are for those who need specialist care in terms of pain management.

Mrsmch123 · 20/02/2023 13:43

I'm a nurse in a nursing home and have a huge passion for end of life care. It's one of the few things that we absolutely need to get right as you only get one shot at it for the resident and family. I would argue that we provide the best end of life care as we generally don't have the same level of acutely unwell patients that they have in a hospital.
ive palliative some very complex residents and not one has had what I feel would be a bed death. But it does depend on the team involved.

BigFeelingsMoment · 20/02/2023 13:45

I agree with PP to ask to see a palliative care consultant who will know all the options locally.

Abra1t · 20/02/2023 13:46

My father has compassionate and kind care in a nursing home in his last months. He died there and I think it was the best possible outcome for him and my mother.

Saturdaynoon · 20/02/2023 13:47

Very usual to discharge to nursing homes for end of life care, and the homes that I deal with have all been very good at it. Far better than a hospital setting, as it is calmer and less medical.

Hospice places are like hen's teeth around here.

Timeforachangeisitnot · 20/02/2023 13:51

When we were in the same position last year, we were offered several homes which had palliative care beds and trained staff. Effectively similar care as was offered by the local hospice , which is very much focused on end of life cancer care.
MIL died before she could be moved, but I have friends in the district nursing group who rated these care home options very highly.

Takingthepiss · 20/02/2023 13:56

i know this sounds harsh but she’s taking up a bed that someone else will desperately need. The options now are hospice, coming back to her home but she will need family there 24/7 so this may not be an option (or possibly due to her complex care needs may not be an option) or a nursing/care home (probably nursing due to complex health issues)

if at home or a care home the local community palliative care nurses will be administering her end of life drugs as necessary. They won’t be there 24/7 but you will be able to be with her as you would be in a hospice. A hospice will be staffed by palliative nurses. A nursing/care home will have a nurse but this may not be the nurse administering her palliative medications. The care homes I’ve been around usually have a carer sitting with someone who is dying if there is no family with them.

please don’t be scared of a care home or nursing home. They will be more comfortable for her, she will be allowed some privacy and dignity as opposed to a busy hospital where nurses are snowed under. You will be able to make it more comfortable, some soft furnishings maybe from her home some photographs flowers etc. you will be allowed to come and go as you please. Even stay with her. The staff are highly experienced in end of life. They sadly see it all the time. You can ask the hospital which homes they are considering and even maybe have a quick visit first just to familiarise yourself, see her room prepare it for her. My thoughts are with you Xx

FlatWhiteExtraHot · 20/02/2023 14:07

So sorry you’re in this situation, I agree you should look into hospice care.

Ultimately the hospital want the bed. That is what it comes down to unfortunately. My mum had a stroke 5 weeks ago and was sent home from hospital after 10 days as they needed the bed. She lasted 2 weeks at home and now she’s back in hospital again where they are desperately trying to discharge her again in spite of me repeatedly pointing out that she will just end up back in there.

Iluvfriends · 20/02/2023 14:12

Some care homes specialise in end of life care. They aren't just put in there and forgotten about.

Ridingfree · 20/02/2023 14:32

Please consider a local hospice they are much nicer places and family can visit 24/7 etc so much more dignity for patients

GETTINGLIKEMYMOTHER · 20/02/2023 14:37

Both my mother and a much loved aunt died in their care homes and I couldn’t fault the way they were looked after at the end.

WiseUpJanetWeiss · 20/02/2023 14:38

My DM was discharged back to her residential care home for end of life care, which is what we all wanted. The ambulance staff were wonderfully kind. The care home staff were absolutely fantastic, and we were able to stay with her in relative comfort and privacy.

However, the two days between her getting home and dying were over a weekend and the palliative care community support was patchy to say the least. A Dr and two of the nurses were great. One of the nurses was clearly not competent in dealing with end of life medicines (couldn't understand the prescription). Getting hold of some replacement meds was also a real palaver.

So my advice is a nursing home or hospice would be great, a care home not so much unless you have excellent GP support. I hope it goes as well as possible for you all.

GETTINGLIKEMYMOTHER · 20/02/2023 14:40

I should have added, one of us (me and 2 siblings) was able to sit with my mother for the entire 36 hours when we knew she was on her way. We took turns - the staff were extremely kind - there was no question of us not being able to be present ‘after hours’, so to speak.

Ilovetocrochet · 20/02/2023 14:59

Another advantage of a care/nursing home is that they are usually not in a hurry to have the bed free after the death, we were able to remain with mum afterwards for as long as we wanted. We did not feel pressured to leave and were able to make arrangements with the funeral directors etc while there.

Original poster
Rose3434 · 20/02/2023 15:08

Thank you all so much for posting on this x

OP posts: