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.

To all those saying let the dying parent come home - what happens when the carers don’t turn up ( and that will happen ) is the other parent in their 80’s supposed to step in and try and manage the situation ? It will be a very tough and stressful situation. Without going into too much graphic detail, dying is not always a case of the person slowly quietly slipping off to sleep, it can be distressing and for the dying individual as well if pain is having to be managed that’s tough if the carers / end of life team aren’t there. I can fully understand the OP’s concern and reservations in this situation.

@Wingedharpy I am the closest so plan to go tomorrow. I was only made aware of the situation this afternoon.
The nurse named my deceased bro as the first person they said he’d spoken to and then asked me to explain to the sister that DB is dead, so they know something is amiss.

OP you're coming across as someone who will use any excuse not to let your dying parent have their final wish. I hope you don't have any regrets or guilt at a later stage.

It can be easy enough to think if someone was in a certain situation one would do x,y or z but often when having to actually face the reality one could very easily change their mind.

I don't mean to sound callous, but how long do you expect them to last, realistically? If it is a matter of days or a couple of weeks it will be more manageable than several months. And if it goes to several months the dying parent may well have the opportunity to change their mind again and ask for hospice.

So sorry you are going through this. I think the fact that your family has been through this with your DB, and know that the promised care didn't always happen, makes this more difficult. Would your ill parent be discharged to home if your other parent wasn't there? Could they come to stay with you or one of your siblings?

I have recent experience of people receiving exceptional, end-of-life, care in hospices. It was very, very different to how they were treated in hospital.

@honeyrider if that’s how I come across then so be it. We all watched my DB die, it wasn’t pleasant, there were times carers didn’t turn up, it wasn’t dignified and my parent vowed from those days forth they would not be at home. And now that there is questions about capacity, I have to think of their wishes when we knew they had capacity. Pre cancer.

@T1Dmama If it we thought it wouldn’t cause issues with other parents mental health and support in place, any of us would have them at our homes. No issues there.

No she's not!

She is worried dying parent doesn't really have this dying wish.

I'm so sorry you are going through this OP.
Hopefully, by the time you arrive tomorrow, the situation will have changed.

@OrangeJeans Thank you.

You cannot refuse someone entry to their own home just because the other parent doesnt want them dying there!

Er, so the hospital can force their way into the house with the ill person and the partner just has to comply? No of course not. The ill person can't come home independently so they need partner to agree. Hospital are telling you 'this will happen' because they know many people will be too stunned to argue. I would also suspect this has been 'suggested' to move them on as the hospice bed will take longer.
Ring and ask for the ward manager. Say your other parent is unable to cope and the in patient parent cannot come home, and any attempt to bring them back will be refused. If they argue - they may well - say you will be contacting the chief executive immediately as your other parent has refused this. Stand your ground. They will actually get better treatment in a hospice as you know.

I completely agree. My father.was dying of cancer. The end was near and the hospital wanted to put him in a hospice where he would get more specialised attention but Dad insisted he wanted to die at home. He told me he wantet to be with my mother at the end. He got his wish.
I can't tell you how relaxed he was when Mum sat and held his hand. MacMillan nurses dropped in to see to him and explain things to Mum. We were all there when he left us because the nurses.had told us it wouldn't be long now.
I think last wishes should be honoured if possible. It's the last thing the dying will ever ask.They deserve that.

I am so sorry you are all experiencing this, it sounds incredibly hard. I think instead of this being a capacity issue it may be that your DP is just scared, overwhelmed in hospital and facing the reality of a terminal illness has changed their mind. McMillan are amazing as are some carers and specialist nursing teams etc who I'm sure would be very aware of the remaining parent.

would you and others be able to be there to support the DP/deal if carers do not turn up/help with respite? If so perhaps this could alleviate some of the concerns?

@SammyScrounge I’m pleased
your parent got the ending they wanted.
The problem for us is, this has never been their want. I’ve said upthread about my DB’s passing and how it affected my parent. Now there’s questions about capacity and if this really is their wishes. We have to think of their wishes before we were questioning their capacity.

Please believe me when I say it’s heartbreaking for us all to have this uncertainty.

They've been assessed as having capacity.
It sounds to me like as death has got closer they've decided that they do want to be at home but some of their family don't want that.
I would hate to think that one of my children got to decide that I had to be shipped off somewhere to die rather than go back to my own home.
Even if you did get them into a hospice, they would still be given the option of staying there or going home on end of life care

@WeightLossGoal2024 That is another part of the issue, there is no-one where they live to help of something goes awry. I am the closest at 2hrs away with young children. The next closest sibling has significant caring responsibilities. It’s a mess.

Are you able to speak directly with them and discuss all the options? If they truly have capacity you should be able to do this.

I’m so sorry for you and your parents

Can you call age concern? Adult social services?…. Ask for a second opinion regarding capacity, tell them parent is claiming to have spoken to deceased sibling on a non existent phone….. if nothing else asking for another assessment of capacity may delay things, I do agree with someone else, one of you children need to make the trip to the hospital and talk to the dying parent, record the conversation as evidence and see what they say about their sudden change of heart…
Sounds more likely to me that the hospital want him discharged and know the hospice is currently full. So they’ve ‘suggested’ he’d be happier at home…
I’m struggling to believe that your other parent has no rights here….
Please do call someone for advice on this, especially regarding capacity ..
I hope the other parent will maybe come and stay with you or other siblings if they do come home. … caring for someone adds years into someone… my nan cared for her mother, she died literally within months of her mother passing… she was only 59! Then 2 months later my grandad also died… my poor dad lost his nan and both his parents within about 6 months..
I worry for my parents health now as my almost 100 year old nan has decided to move in with them, and she’s really putting a strain on my poor mother. My parents are so tired and it’s negatively impacting my mums mental health having my nan there… It’s awful and I am hoping to be able to go there once a week and literally kick my parents out for a few hours so they can de-stress

@Flopsythebunny Assessed as having capacity but also telling staff they’ve been talking to my brother on the phone. My DB is dead. And parent is without a phone.
The nurse told me this on the phone and had me tell the sister that DB is dead.
So you see why we’re querying everything.

They've been assessed as having capacity.

A family member was assessed as having capacity, when they got the year wrong (20 years out), got how many children they had wrong, forgot the death of their spouse, and more. It's done to recommend the easiest course of action for those currently caring for them, not because it's true or the best thing for the person.

Any chance there is enough room in your house for both of your parents? Big ask. I know. Carers in the home are incredibly intrusive,even if they are the nicest people. If it's only a couple of weeks would that work though? I am in a similar but not the same predicament with my very elderly parents and I have no idea what to do, so I feel your pain. Best wishes.

@T1Dmama I’m going tomorrow morning.
I have a contact someone in social care for other parent due to their vulnerability so will call them en-route.

OP you will get some strong views here about the prioritisation of the dying persons best wishes.

That's misdirected to a degree because it is also about both that person's capacity and best interests which includes the feasibility and impact of facilitating that wish.

The fact your other parent is vulnerable is a factor here and it's not appropriate to meet one persons wishes at the potentially significant expense of another.

In your situation I would call adult social services and ask them (rather than health) to make a determination on capacity. You should also inform them about the vulnerability of your other parent. Potentially sending your dying parent home MAY represent a safeguarding concern for the other parent.

This may well go to a Best Interests determination but SS will guide you through that.

Yes, but that doesn't mean that they don't have the capacity to make decisions about their own death.
Someone very close to me didn't want to die at home until about 10 days before. Then they changed their mind. We did question if it was the strong meds talking but it wasn't.
The hospice were brilliant and had them settled in their own home with everything they needed within 24 hours
It meant that she could be with her husband and young children and surrounded by everything she knew right up to the end

@marmaladian that has crossed my mind but we’re not even in the same country so I don’t know if it’s plausible.
But we could do it if my DP and the DC went to his parents, DP and I have discussed it previously when other parent was struggling.
The next closest sibling is in the same country but has significant caring responsibilities so I don’t think they could “host.”

the reality is it is very very easy for all medical staff to coerce sick seniors into saying they want to go home vs waiting a respite or hospice bed.
"wouldn't you rather be home with your family?" gets spread between the staff like wild fire. next thing you know you have a sw (who is aware that bed blocking is a huge problem and her job depends on being firm) calling you saying your family member wants to go home.
the op is right to push back right to challenge this change of plan, the family's past history of the brother dying at home and the spouses mh are both valid concerns.