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.

Hi OP, I fully understand what you're going through. I think some of the posters saying the dying parent should be granted this wish haven't actually lived through how difficult the reality is. I also suspect it's the hospital pushing for the dying parent to be at home as they likely want to free up the bed they're using.

My DH died a couple of months ago. He would say consistently he wanted to die at home, not in a hospital. He had no real experience of hospices so thought they'd be as bad as a hospital. He too became delusional and would talk to and see his dead parents. Fortunately he started getting some outpatient treatment from the hospice and began to understand how different they were, and what a different experience it would be. At this stage my own mental health was on the floor from being his full time carer. I needed help but I hated even having district nurses come in for 20 minutes. Different person almost every time, trying to control my barking dog, feeling a need to tidy up all the time.

Toward the very end DH became extremely ill with terminal agitation and I was finding it impossible to look after him. We begged the hospice to admit him. It was DH luck that another patient, who was due to be admitted, wasn't, so they took DH straight in. He died 2 days later.

Are you getting outpatient support from the hospice? Our one used to ask regularly about DH wishes on where to die. Hopefully they'll have it on record that your dying parent wanted to be admitted. I'd include them in your discussions and explain the situation. I hope you get this sorted, and so sorry for the loss you have to come.

Have you spoken to the palliative care team at the hospital? They are in a sense ‘independent’ from the hospital ward, and will be able to spend time talking to you all to try and support a solution. If you haven’t had any contact yet, I would try and find their number on the hospital website, or ask the ward to refer you.

I’m sorry you are going through this. The capacity issue is a red herring here and not the issue. The issue is that your parent at home ,and you as a family, don’t feel that being at home is possible for your dying parent. Your reasoning for this is understandable and accurate. It is likely to cause harm to your parent having to do the caring.

This isn’t an uncommon situation, where someone is choosing care somewhere where it can’t be provided. Deaths from/with cancer can be hard to manage in terms of symptom management and community support may be good but is often patchy. There usually needs to be a network of people at home to support each other. It’s also difficult if the main person at home has their own vulnerabilities.

Your parent at home has the right to say no they can’t provide this care at home and you can work together to find a compromise/solution. Your role here I think is to be firm with the hospital that home isn’t currently possible. Are the palliative care team involved as they should be working through this with you as a family?

I hope you get the support you need.

I'd go and speak to the person who's dying. If they want to come home, let them.

My DF wanted to be at home. The hospital tried to force him into a home, he resisted Covid tests, which meant the home would not take him. We had a very good liaison worker, who once she was explicitly told he wanted to be at home, was amazing throughout. She arranged a live in carer, other carers coming in 4 times a day to help to wash him and give extra care. This was all funded by CHC, (continuing healthcare funded by the NHS). Initially it was funded for 6 weeks, but once the review time came around, he was unconscious, so the funding continued. He was also given Hospice care at home, which was the part that let him down. He had a morphine syringe driver fitted, but if he needed anything else, I often had to fight for it.

He had the death at home that he wanted, but I don’t think I will ever get over the way he was let down by the hospice. I spent most of his last 10-14 days, fighting for something and someone to help.

The night he died, I rang the Hospice at home number and was told that they were so short staffed that I needed to call 111, and get a Dr to come to us to agree that he had died, and remove the syringe driver, as the undertakers wouldn’t collect him until that was done. It took 12 hours on the hottest day of the year before anyone came.

I did get a written apology from the Hospice and was promised that they would learn lessons from our experience, but by then the damage was done.

I would ask what the care package consists of, what plans they have for the parent that does not want to, and in fact is unable to facilitate this move.

You are stuck between a rock and a hard place here OP, the only answer may well be that you take the vulnerable parent to your home and allow the other to have hospice care at home. If they are already suggesting that they have this type of care, the life expectation is now short.

I’ll be thinking of you

I wonder if your dad's change of heart lies with the lack of hospice space. He may be wanting to leave the hospital by any means and at this moment home is the only place he can go.

I came on to say exactly this. Would your dad consider a hospice bed if one was available?

Our local hospice has a dedicated nursing team who work in the local hospital. If you have anything similar I strongly recommend you talk to them. They are geared up to care for the family as well as the patient, they will understand the issues you're facing, and they will have a better idea of what beds might become available and when.

Bear in mind that in patient hospice care at this point doesn't necessarily mean it's near the end, it can also be for short term stays while they work out what treatment, pain relief etc is most beneficial.

OP I’m sorry for the situation you’re in. I regularly support people who die at home which IMO is the best place for most people to die but I understand your families concerns. How close to death is your parent? In many areas getting a bed in a hospice is near impossible so many patients who can’t go home but are close to death on normal wards. In my experience both professionally and personally staff on wards will do all they can they are looking after lots of other patients some who are acutely unwell and may take priority over someone who’s dying.
I would strongly advise you to try and sit down and talk to the consultant looking after your parents and the nurse in charge of the ward and explain your legitimate concerns calmly as you can.
i just want to add that I work all the time with patients who are dying at home. Many families when we first become involved talk about their relative being admitted into the hospice ward which in area is highly unlikely to happen. So accept that the person will be better dying at home rather than on an acute ward. Without fail after the person had died they say how pleased they were that the person did die at home it was better the their relative but also better for them. We go above and beyond for the dying we prioritise them over virtually anyone else we are discrete where necessary but also supportive we care for the dying all the time and I believe my colleagues and I are excellent and supporting everyone at this difficult time. We aim for a peaceful death (which is what we all would want) and we achieve it 99% of the time. It is probably the most satisfying although emotional part of our jobs. We come into families lives at their most difficult time and are guests in your home so we are respectful but we also form relationships with the patients and families and genuinely care for all of you we frequently attend the funerals of those who we’ve looked after it the last thing we are able to do for the patient and the family. What Im trying to say is that death at home is often the best place for the person dying and the family.

That's actually a really common thing within the last few weeks of life, to see and speak to deceased loved ones.

If their current reality is that DB is alive and talking to them, I suspect it has overridden the memory of him dying at home and therefore it's quite likely they do currently want to come home to die.

You and your family need to decide if current wishes are less important than previously stated wishes, rather than ignore what they are saying now and insisting the hospital is influencing them.

I'm so sorry this is all happening how it is, there really isn't going to be a right solution, just one you can all live with with least regrets.

It certainly sounds like dying parent will be coming home, the choice is going to be if non-dying parent will be there or not. Do they, and the rest of the family intend to be with dying parent as they due or will they only have the comfort of strangers?

The carers coming 3/4 times a day leaves your mother doing the caring solo the other 23 hrs

how is your father going to get on a commode, etc
The practical aspect is surely a safeguarding issue of personal care and if he falls you’ll be needing to call ambulances regularly to deal with this

As many others have said, resist letting your ill parent home. Having experienced one parent dying at home and the other in a hospice, I wouldn’t wish the home death on anyone.

It took 4 siblings rotating 2 on, 2 off 24 hours a day plus hospice visits, and district nurses. We didn’t spare his dignity, we never controlled the pain. It was a living nightmare, for all of us and I still can’t bring myself to think about it.

I can only imagine that people advocating for home deaths have never experienced one. Terminal agitation is such an inadequate term for what it is. It is most certainly not confined to a bed, in our experience it was exhausting and dangerous.

In contrast, the hospice death WAS everything you would hope a ‘good’ death could be. Peaceful, pain control, able to spend quality time together.

Ex-hospice chaplain here. The post I've quoted is exactly what I was thinking. Hospice beds are at such a premium that it will be easier for the hospital to send a dying patient home.

This is the hospital trying to free up beds as currently your dying parent is bed blocking and only there because a suitable hospice space has not become available. I work in care and if your parent who is at home is not happy to have the ill parent home just say no and refuse the request until you have been given a full written copy of the care plan. Ss and hospital will say anything and they will be empty promises just to clear him out of the hospital. I see this almost daily. Families persuaded and bullied to take people home and promised a care package is being put in place when the reality is the family are left to cope and told there are no local carers available to cover the hours. 24 hour care will not materialise and your poor parent will be expected to cope.
can the non ill parent stay with you as if there is nobody else in the home it is unlikely the ill parent will be sent home? Just say die to the trauma of your fb dying at home if your other parent is discharged there will be nobody else living with them?

Op hasn't mentioned which parent is dying as far as I can see.

It's not as simple as being able to drop everything and go , people have jobs and children they have to deal with

This. Other parent will have their house back to themselves soon. Sadly.

I had this kind of situation but my dad wasn’t dying, he needed care and my mum didn’t want him home after a hospital stay partly because they hate each other but mainly because she knew the care package would mean she’d still have to provide care. My dads wishes to come home completely trumped her assertion of carer burn out. Social worker told me police would gain access if my mum didn’t let him in voluntarily. It didn’t come to that as she agreed for him to come back. I think the social worker was talking bollocks but that was their stance.

Have read most of the thread and really feel for you op. Suggest you talk to the hospital and carefully suggest that this seems to be an unsafe discharge and then go through your concerns. Questioning the safety of it usually triggers a pause and a wider discussion…

its not a case of getting your house back

its the issue if an 80 year old trying to care for a terminal patient, it’s a difficult task for a much younger fit oerson

24 hour care is 4 carers 4 times a day fir 30 minutes

the other 22 hours are down the the 80 year ild

and terminal patients need a lot of care, it’s not an easy task

No that doesn't happen like that.
The patient isn't able to come home unsupported. The home will need adaptations and also carers. The home is shared and the other person living in the home can say clearly that the home is not suitable for said adaptations e.g. no room big enough for a hospital bed. And that they are not willing to have carers visit the home.
The sick don't trump the others living in the home.
OP your parent and you have to keep stating over and over, home is not suitable, they cannot come home.

I'm so sorry that you are in this situation, it is unbelievably hard. It could be that hospice don't have capacity at this time to admit your parent, or that he does not yet meet their criteria for admission.

RE: your parent's capacity...they assess capacity for specific things. So someone might have capacity to decide on discharge destination but not to manage their financial affairs. Something to bear in mind. It could be that patient has expressed wish to go home, and team looking after him are just assessing the feasibility of this.

RE: 24hr care at home for a palliative patient. I have not heard of this happening within NHS unless family have paid for it. A double hander, QDS (4 times a day) package of care, yes. You can get community hospice team (in my area) and district nurses too, but I don't think even they would be able to provide 24hr care at home. But things could be different in different Trusts and regions (so I might be wrong there!).

Going forward...I would speak to PALS, ward team and palliative team in first instance. State that family are NOT able to provide any care at home (either during care calls or between them). Mention the vulnerability of other parent. With respect to hospital bed in front room, it could be that when this is assessed, it might not be suitable/safe even if it is the patient's wishes (there might not be enough space). If patient cannot transfer to a commode, then they would need all care in bed, particularly, if a hoist doesn't fit in the front room..along with a commode. If patient is bed bound then they usually require two people to give them care (particularly if they are not able to reposition themselves independently in bed). If they need hoisting, that will require two people. It is arduous, hard work, and there is no definite date/time of it ending (i.e. one doesn't get given a set time/date for someone's passing). And I say that as a hospital nurse of 20+ years experience in NHS: and FWIW believe me, I bloody love my job, I'm not slagging it off and I'm not hating that I have to look after patients - I am only stating that it is (or can be) very hard and arduous work.

I wish you all peace and a good outcome of these talks xx

Refuse to have them home

All these posters which are saying come home have unlikely coped with a dying person and unreliable carers. I'm sorry about your DB, and I can believe that after witnessing that your DP doesn't really want to be at home.

The reality is you won't have 24 hour cover, you will have no idea when you will have cover.

When the pain becomes unbearable and you have to call for support you might wait hours.

There is no dignity in dying at home without a fully functioning medical service/support

I'm sorry you are going through this. The hospital just want to discharge, they don't care where they go.

Have you been in to the hospital to speak to dying parent about this? I suspect they just want out of hospital and don't want to die there.

You really need to go to the hospital and have a meeting with nurse in charge, discharge co ordinator and your dying parent.
Then you can all discuss dying parents wishes have always been to go to a hospice and that going home won't work and the reasons why.
Your parents are elderly and vulnerable and need you to advocate for them

The caveat to this is that this service may not look like this everywhere. Within the NHS we sometimes assume the care we offer is the same elsewhere but the resources aren’t the same.

We can’t promise that this is the support that would be available locally to this family. The OP would need to assure herself of that. Her concerns are often played out in real life where people struggle to access symptom relief and support when they need it most.

Death at home can be a positive experience for many families with the right support and where it feels right for the main people involved but it can also be traumatic without the right support and where key family members don’t want this.

I don't know if this has been mentioned to you, and I really don't want to sound crass but it's a possibility that when some elderly/very ill people talk about wanting to 'go home' they are really talking about dying. I was told about this but also saw it myself as when I got my ma home (to her house as I knew this was what she wanted previously btw) she was confused for a couple of days and kept saying she didn't think 'home' would be like her home.
It's terribly draining just physically having someone on end of life in the home, and my mum had heart failure/pneumonia so not in dire pain already. The hospital however was rammed on that ward and pretty dreadful so anyone would have wanted to leave it tbh. So it could be that?
There was a hospice ward at the hospital but there had to be a bed available of course!
I do think It's resource driven mostly unfortunately- I think they'd have been ok to leave my mum on that awful winter ward to pass away in a few days they thought (though she lasted a good few weeks once home) but a cancer ward will require beds more desperately of course - there seemed to be very strict criteria on actual hospice care as whilst she needed 24/7 monitoring and had 6 care calls plus many district nurse calls and call outs the palliative team told me firmly that she didn't actually need a hospice bed or meet requirements - I'd not even asked actually just asked if I could have a few hours respite to go to my own hospital appointment. But that was a very clear message I always got - the additional support at night kicked in night before she died when it was finally a priority.
There are some excellent support threads on elderly parents. Thoughts with you OP.

As soon as you mention the relevant case law and tell them that you are considering suing them, they start to give an awful lot of figs!

In my case, the ward sister rang the Consultant and made him return to speak to me and arrange further tests on my dying parent. He’d already signed off his shift an hour earlier and had left the building and was meant to be on holiday for the next fortnight, but we all knew he’d taken short cuts in mum’s care and I wasn’t going to let that continue.

Handy that I’d studied Medical Law as one of my options in my first degree!

Living parent can and should just say no that is not happening. Tell them straight the door will not be answered and access to the home will not be given.
i know this sounds harsh, but health make lots of promises that don’t happen and your surviving parent is going to be the one left to carry the can. This is due to a lack of hospice beds and a cheaper alternative at play, imo , not the choices of a dying and hallucinating patient.