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 honestly think this is about the dying parent, not everyone else. If they've changed their mind they've changed their mind. They may feel scared where they are, and if it's their last wish to be at home why shouldn't that happen?

Capacity is time and decision specific, it's not really a general thing. Your parent could have the capacity to make some decisions, and not others. They may also have fluctuating capacity at different times. It's complex law in some ways, and not just a case of 'they do/don't have capacity to make decisions'. It's not true that only a qualified social worker can make that call though often that's who will undertake a formal capacity assessment.

I do think it's worth asking for further support to figure this out, either from health professionals or social care. Your parent can't be forced to go to a hospice if they have capacity to decide they want to be at home, and if they don't have the capacity to make that decision it'll come down to what's in their best interest. Equally though that doesn't mean your other parents feelings can be ignored. Has anyone discussed with your ill parent how your other parent feels? Might it be possible to change your ill parents mind if they knew?

You need to call the hospital and simply say that your other parent does not want carers in the house, does not have room for said hospital bed as it will mean they can’t relax either and wants dying parent to go into a hospice…. It is your remaining parents home too and if they don’t feel able to cope then they absolutely have the right to reuse to have dying parent home! It isn’t very nice for your parent to know their spouse did in their living room!!…. Just call and tell them NO!!

@48Hourss I get that but other parent has aged related vulnerabilities and it’s wrong to ignore those.

@Jenala dying parent will not consider other parents feelings or needs, they have not done this for some time. A complete shift of personality as the cancer has progressed.

@BrightTealExpert Thanks, they have had contact with social care previously so I will check that out.

@T1Dmama I basically said that today and was told “dying parent would be having care at home” repeatedly, rather than anything helpful.

You and your other parent need to put your feelings aside. Your dying parent wants to come home to die and the hospital say they have capacity.
If this were my parent, I would move heaven and earth to make sure they got their wish.
To go behind their back and make other arrangements would be awful

I think the person who is dying should get their final wish.

I feel you are overthinking it.

Dying parent has every right to go back to their home if that's what they want

Just tell them that your mother/father doesn’t want him/her home to die and that you are advocating for your remaining parent. I would ask who you need to complain to as you feel your remaining parent is being bullied/forced into having carers etc into THEIR home! Once you start talking about making official complaints to people in higher places they will except No as an answer !

If it’s just their home then of course. However the home is shared so the other parents feelings are equally as important! And actually if having the sick parent home to die is going to negatively affect the well parent, then I’d be fighting to keep at least one of my parents healthy!

I’m sorry this must be so difficult . The medical staff will have assessed your parent’s capacity and if going home is what they want then the hospital have to make arrangements to support their choice .
If yous don’t think they have capacity you can ask for this to be reassessed .
Is your parent aware of their partners concerns ? If not I think yous need to talk openly about this and hopefully agree on a way forward . If they are set on going home is there any way for family to take some time off work to be around ?

For those saying dying parent wants to come home so have them home, my siblings and I are concerned about dying parents capacity and if they’re being convinced home is best because they are not happy on the busy ward waiting for a hospice bed.
Dying parent today was telling staff about the phone calls they’ve been having with my living siblings and my deceased DB. None of us have spoken on the phone as dying parent doesn’t have a phone.
No-one at the hospital wants to listen.
So you see why we’re concerned.

My DB died at my parents home. Similar situation.
My dying parent has always, always said that was not their wishes. It wasn’t their wishes yesterday.

I’d also be concerned that the hospital staff have coerced the dying parent into going home, even with 24 hour care, it’s cheaper to send someone home than to a hospice… can you visit the poorly parent and talk to them about this,
Despite what posters are saying, your parent is in their 80’s, so this situation isn’t fair on them either!…. Even with carers it’s very stressful.
maybe you need to call the hospital back and tell them that other parent doesn’t want dying parent home and they can insist all they want but it’s not happening!

Have you managed to speak to dying parent yourself OP regarding the impact of this change of wishes on well parent?
Is the Hospital Social worker involved?

I agree. It’s a hard time for everyone but the person who is dying should be able to choose where they die. I’ll try and put this gently but I presume if your parent was at the stage they were moving to into a hospice that they don’t have long left. They might be home only for a short while, or it might be that if they have longer they may want to move into a hospice at a later date.

@Wingedharpy Dying parent doesn’t have a phone with them as they refused to have it with them and is refusing to speak to any of my siblings or me if we ring the ward.

@T1Dmama Thank you, my other parent has had significant mental health crises previously and we fear this could easily trigger another. Hence the vulnerability.

Firstly, I’m so sorry, this is an awful situation.
I would also ensure that their dying wish be respected. I think this is really important for a couple of reasons. Firstly it’s the right thing to do. Secondly you will all (including your other parent) have to live with the guilt of not doing all that you could for them when they needed you most. You will also be showing the surviving parent how they will be treated when they die (i.e. you will be showing them that when they are dying their wants and wishes will be disregarded as well). I can understand the surviving parent feeling initially overwhelmed at the thought of having to go through this, but there is a peace that comes from knowing that you have done all that you can for a loved one at the end, especially given it will likely be for a relatively short time.

@Lampshadeblue but what if you all doubt it’s actually their true wishes, but that they’ve been coerced into something because of a lack of capacity.

I think the best thing to do would be to move the other parent somewhere else temporarily

Can 1 of the children visit?
I appreciate that this means a 4 plus hour round trip but...IMHO, it is easier to fob people off on the phone but not as easy face to face.
If dying parent is talking about phone calls with deceased child, then, they clearly do not have full capacity.

Why would they be coerced? Whether they go home or to a hospice makes no difference to the hospital.

How convenient that the hospital that requires their bed back also demand that your dying parent is discharged back to their own home against their pre diagnosis wishes.

Here's some questions;
When your dying parent was diagnosed, did they liaise with the local hospice? Could you phone them for advice as they are highly likely to have experience of this situation.

Discharged to home will require prescription medications administered. What has the community nursing team said about this?

Your other parent has rights. Can you ring age concern?

This is extremely heartbreaking for you. Have you got support with this too?

And if other parent doesn’t want them dying at home? Are you saying they have no right and just have to except strangers in their house 24/7 ?….
I know someone who stayed in hospital for a whole year waiting for a space to come free in a home because her husband refused to have her home. The hospital kept calling him saying she was ready for discharge and he said she couldn’t come home. The hospital couldn’t force it.
It’s totally wrong to force an 80 plus year old who themselves is vulnerable to have a dying partner home and carers in and out all day …

Maybe @Whyismycatanasshat if they’re insisting and you don’t let your other parent refuse, your well parent could maybe come and stay with you or one of your siblings?
I definitely think you need to speak to the parent in hospital and ensure they’ve not been coerced to change their mind

Call the hospital social worker tomorrow as a matter of urgency.