To ask for help defying a dying parents apparent wishes about care…

[Whyismycatanasshat]

I need to ask if anyone knows if there’s a way to stop my dying parent coming home to die instead of going to a hospice.

Long story. My parent is dying of cancer which has spread and has been hospitalised, waiting for a hospice bed.
Parent has always, always said they wanted to die at a hospice. 100% not at home. Even pre-cancer.

Today my other parent was informed that dying parent wants to come home and care would be organised.

Dying parent says they’ve changed their mind.
Hospital say dying parent has capacity and has rights to change their mind.

We have questioned capacity as we think it’s lacking and has been for some time but hospital say they have capacity.

Hospital say hospital bed will be provided: carers will be there 24hrs a day.
Other parent (early 80s) does not feel they want dying parent at home.
They have expressed feelings of vulnerability about having carers (“I’m worried about having strangers in the house with me. It frightens me a little.”) and knows from my DBs passing that the 24hr care at house doesn’t always happen as planned - there was several no show carers. Which was horrid.
Also, they feel they will have no place for respite themselves - they are struggling mentally at the moment - as dying parent will be in the living room of the 2 up 2 down house and all surviving children are at least 2hrs away.

Is there any way I can help my parents in this horrible situation?
As awful as it sounds, I think a hospice is the right place for dying parent and other parent needs to be considered too.

I’m so so sorry for your dilemma and your situation OP …. It sounds so sad and difficult and one I can imagine happening with my parents although it hasn’t occurred to me until reading your post. Reading all these sad stories and different experiences makes it very difficult to work out what’s best. I really wish you well and sending strength for you to cope xx

How many children are there? It sounds as though there are a few weeks left, at most. Could you stay with Mum on a rota basis, so she isn't alone with him? I realise that might mean time off work, but these are extenuating circs.

I do not think you can prevent it.It is their home and their choice to make even if it is a bad or strange choice.

Hospitals are truly awful places for the terminally ill and I’m not surprised that your dp is longing for home. Hospices are very different because patient care is at the heart of their mission.

This sounds like healthcare trauma to me. My df died in hospital care because his transfer to palliative wasn’t processed. And while individuals were doing their best, they were hampered by a system that prioritises keeping people alive regardless. We had to beg for pain relief which wasn’t adequate and was never delivered on time. No one was able to make a common sense decision. Understaffing meant that basic care was neglected, and his last week of conscious life was a time of pain and humiliation.

Can you speak with the hospice and palliative team and see if they can help? If they were still asking to go home from the hospice that would be an entirely separate thing and I would absolutely honour that wish.

I’m so sorry @Whyismycatanasshat that you’re going through this.

You need to state clearly to the hospital that they cannot go home due to space, mental health, lack of anyone able to care. Keep repeating they cannot go home. Do they have keys? How would they get in unless let in? I have seen elderly people sent home from hospital and rarely do they have people to transport them inside properly etc. Hospices are amazing places that provide wonderful care for all the family. The dying person gets all the pain relief they need and it will be calm and peaceful. Keep saying no.

OP, I'm sayng this as someone who has been caring for a DH in a hospital bed in the sitting room for 2 years, so do have some experience.

3 things really. First, it sounds like there could be issues about his capacity, given his statements about phone calls to relatives, etc. Capacity can fluctuate and you need to make very clear to medical and social work staff what he's been saying.

Second, I imagine this is 24/7 care under Continuing Healthcare. As you rightly say, this is not always easy to arrange seamlessly and there is the potential for gaps, missed/late visits. This means that if your DM wasn't present to at least monitor him when this happens, it would not be a safe situation.

Third and main point; if he does come home, there is no way at all your DM can be made to be present. If there is a clear, firm plan for her to be elsewhere (friends, family, hotel) the staff arranging discharge will have to take that into account and I think might well reconsider the situation. You would need to be very, very clear in letting them know this.

It's an awful scenario all round but your DM matters too and has the right not to be forced on to a path she can't cope with. Care is hard, end of life care especially hard and she shouldn't be judged for not being able to face this.

Good luck today.

I agree with this.

I do too. It feels mean spirited in the extreme not to give someone who’s dying the option to spend their last hours in their own home. I know someone whose father was refused a return home to die but when his widow died she ended her days in her own bed. It was spectacularly unfair.

@BrightTealExpert You can point blank refuse to take someone home. The hospital has to send equipment etc if the spouse isn’t willing or able to support the person for whatever reason the hospital will not just deliver a patient home. They would keep them in hospital until a hospice bed becomes available. I’ve been through this with my aunt.

There is a mechanism in the CHC process where six weeks of nursing home care can be provided on an assessment basis. We accessed this for our terminally ill relative through the hospital's palliative care consultant and social worker though it took some desperate phone calls to the consultant's secretary.
This was to give breathing space whilst care package was organised. In the event, once our relative was installed in his own room in a local nursing home (much calmer environment) and was reassured that everyone would still be coming to see him daily, he decided to remain there.
He didn't last the six weeks so we never had to go on to the actual assessment 😞.

A close relative was in hospital, and obviously confused as from time to time she was coming out with comments that we knew weren’t true. When we queried confusion with staff, they gave us a look as if we were being mean about her and said they hadn’t noticed any problems at all. Some people can sound perfectly plausible in what they say unless you actually know the full circumstances of their lives, which nursing staff don’t, but they should believe the people who do!

Im not under any illusions I’ve worked in four different areas and I am exceedingly aware of how overstretched we are. But if the OPs parent is unable to get a bed in a hospice and stays in an acute ward they are equally overstretched. Many of our families (obviously) have little or no idea about what dying at home can look they are worried that they will be left for many hours struggling with a relative in pain certainly where I’ve worked this is very much not the case. And OP says she’s been offered 24 hour care if this is someone in her parents home 24 hours a day that’s a lot more than we are ever able to offer.
what I’m trying to say is don’t dismiss it look at what is being offered first.

Also to add to my last post, when I say the Hospice at Home carers will visit up to 4 times a day, quite often they won't be able to commit to 4 visits initially, as they are a thinly spread resource, which means more generic care agencies will fill the gap, some of whom are excellent and other's less so. Night sits are quite often sporadic too, only people paying privately for them get them for the full 7 nights a week in this area.

My DF passed a couple of years ago from terminal cancer, we always knew that he wanted to die at the hospice. When he was due to be discharged from hospital the hospice was full and there was no option but him to come home.

He had a hospital bed, carers came 3 times a day, plus district nurse and towards the end he was fitted with a driver for pain relief and we were able to arrange the occasional night support. My Mum was hesitant as she too wanted space, felt ‘unsafe’ having strangers in the house etc etc.

Once home my DF changed his mind and decided he wanted to die at home, surround by the familiar and his family. His choices were taken away from him by his health and there was no way we could deny him this small bit if control. It was honestly the best choice. Losing someone you love is awful but I’m glad he had his choice listened too and we did everything we could to ease the end. His passing was very peaceful and he was able to spend so much more time with our family.

I fell out with my mum at this time as I strongly supported my DF wishes, I’d do it again. I believe at that moment the dying person should be the focus, it will be hard and uncomfortable for those around but the person passing should feel as comfortable as they can.

And leave the dying parent in hospital to die alone in unfamiliar surroundings? Because that's what will happen.

Is this a possibility, OP?
I absolutely get the concerns you have regarding capacity but if querying that fails and the dying person comes home could the other person live elsewhere as a last ditch measure to take the pressure off him/ her?
Very sorry you are having ti cope with this situation. Best wishes

I think you're right. Please don't be guilt-tripped into complying. Dying is not always as easy as it sounds, and being at home does not make it peaceful like in the movies.

Try contacting Adult Social Care and find out about respite care. Explain that your other parent is not fit to cope with having them at home. Would it also be fair to say that you can't guarantee your parent's safety at home (e.g. if they wander around in confusion and might fall)? If so, stress this.

I'm so sorry you're in this shit situation, well done for trying to protect the precious remaining quality of life of both parents.

Unfortunately, it's a different story if someone's mental capacity has declined.

You are horrible and simple of thinking

What is awful is watching someone in so much pain, whilst you endlessly call the emergency line asking when someone can visit to alleviate the pain and no one coming.

It’s an absolutely awful thing to say to someone struggling with whether or not their ill parent will get what they really want and whether or not their other parent can physically or mentally cope with caring for them. Who reads that someone is struggling like that and chooses to make that post? Others have made the point that you need to consider how you will feel afterward about the whole thing and what if this really is what your parent wants in a way that is compassionate and supportive. This comment was just nasty.

Or, him being at home utterly confused about everything.

PPs seem to be imagining this parent as someone with full mental and emotional capacity. If only things were that simple, of course it would be lovely to nurse him at home...

good luck today. i think you do need to raise with the hospital the potential that you will need time to make arrangements for your other parent to move out of home, and see what kind of response you get to that.

like others, i really doubt their ability to put in true 24/7 care at home.

Or your own mental and physical breakdown which takes years to recover from.

I’m involved in a similar situation right now, although it’s with my elderly neighbours not family, so I appreciate the emotional link is not the same.
They have no family at all so I’ve been quite involved at their request- practically and emotionally.
Husband diagnosed with cancer after unrelated emergency hospital admission. Rapidly deteriorated and terminal with no treatment- initial timescale of months / weeks. Very poorly whilst in hospital with 3 other serious infections.
Wife has gone from fiercely independent to an emotional shell of herself.
She was clear she could not manage if he came home- the emotional toll was too much.
He wanted to come home.
I sat in the discharge meeting. Palliative care nurses were compassionate and sensitive and ensured both parties were heard. There was no pressure.
He moved from hospital to a short term inpatient bed in a hospice (not within 10 days of death), to a nursing home on fast track CHC funding.
I took his wife to visit for the first time last night. She is full of guilt and now feels she’s made a mistake and now wants to explore whether he can come home instead with carers. He doesn’t know this yet.
It is such a difficult situation to observe and I’m removed from it as a non-relative. Both of my parents had significant health involvement prior to their deaths but this is my first time involved in selecting / considering care and I can see the impact and all the complex layers involved.

It is a very difficult situation; but hospitals can and do get it wrong.When my dying father was in hospital, my
mother got a call to say that they wanted to arrange for him to come home. She was beside herself; she is 84 and frail. She knew she wouldn’t be able to restrain him if for example he decided to go out for a walk- he was physically able but had a brain tumour so he wasn’t really at all compos mentis.

She knew she wouldn’t be able to cope; never mind the trauma; we had to really push back and refuse. As you can imagine this was a very difficult and guilt making situation. He died about 3 weeks later after a number of falls in hospital. Even where he was looked after 24 hours a day. I feel for you but just keep refusing. Like you say, your parent always wanted a hospice.