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.

You've had some great practical advice on here OP, which I can't add to, but I'm another person in support of what you're doing, having been in very similar situations myself with both DPs. And like TerfTalking I wonder whether the people who are advocating for putting the dying person wishes over everybody else's have ever been in such a situation. You can't end up with everybody else broken. Look after yourself and hope you manage to get it sorted out for everybody

There is a tendency to assess capacity fairly simplistically, especially if the outcome of the decision benefits the assessor in some way. So I would push back on this with the hospital social worker. Highlighting change of personality etc so not considering their spouse. From what you say, I think it is unlikely that they would be able to discuss the impact on others were they to return home. Thus they would not be weighing up all the relevant evidence and would thus lack capacity.

I believe this will go to a best interests meeting whereby one of the things considered is previously held wishes and beliefs. This would be where the previous wishes of not being cared for at home after caring for your DB would be looked at.

They can't discharge home if other parent refuses to allow it- no one can force the delivery of the hospital bed etc. Politely and very definitely tell the hospital discharge home is not possible.
I would also query the 'phone calls' - are they on painkillers? that could be a culprit. May not affect capacity on this decision though bur tbh that's irrelevant if home is made impossible by family refusing.

Don't open the door when the bed is delivered.

I'm afraid that I sympathise with the parent at home who doesn't want their house turned into a hospice. The fact that the dying parent did not discuss this with them and is imposing coming home on them speaks volumes.

We have just been through similar and I was horrified to learn that if the hospital deemed my father to have capacity and he wanted to come home then that was his choice. My mothers needs didn’t come into it, despite the fact she’d be the one picking up the pieces in between care visits.

Fortunately my father agreed to go into a home. But our short term back up plan was to move my mother in with me. Then I thought the care package would break down very quickly. And I was going to ask for a risk assessment of him going home to an empty house.

Our hospital has a carers lounge where they provide really good support to the carers of patients and talked all this through with us. I suggest you see if they have something like that you can talk to. And it would be good to chat to the social worker and explain your doubts as to whether your parent fully understands their decision as previously they asked to go to a hospice. Also try and talk to your parent and see where their thoughts are today.

This is a very difficult time for your family and you have my sympathies.

Hello this is a very difficult situation and I disagree with pp about your parents ultimate wish. Taking someone home on end of life care requires everyone to be in agreement because even with carers in place that's 4 x a day care at best for 15 minutes at a time. Even with District nurse input they could be 40 minutes away with another patient when you call, nothing is immediate at home. My friend is an amazing nurse who I would 100% trust to look after my family and she really regretted having her mum home.

Is there a palliative care specialist nurse involved? If not why not? You don't seem to be getting a great response from the ward and I understand the pressures of acute care and the staff change every 12 hours but someone in palliative care should take ownership.

What is the hospice wait list like? Realistically there is a window to move someone and it may be approaching the end of that so they are exploring other options.

What stage are they at and what needs to they have? Are they conscious? Are they toileting independently? Can they mobilise? This along with confusion could be a big risk because your parent will not wait 3 hours until the next slot with the carer and may g3t up and have a fall. Are they requiring analgesia regularly?

Working in social care, just as I they were well if the person has capacity they have a right to be at home. There is nothing that the other person can do about it other than refuse to provide any care or support, although I do completely hear you. On a personal level I wouldn't like it either as the realities having someone at home while they are dying are exhausting and difficult. I've cared for a grandparent and I had nowhere to go at the end of each day to decompress. But the dying person has to take priority it'd be awful to think that someone was trying to take away your choices for your last ays alive.

It might be that there isn't any room at the hospice so the alternative to being sent back home would be to go into a care home.

It's completely understandable how having a spouse come home to die in the same house as your child did could seriously impact on your other parents mental health. This needs to be highlighted at the best interests meeting which you should be invited to.

What a mess, I am so sorry you are going through this. As well as your social worker contact please also contact PALS at the hospital about the ward staff not listening to your very valid concerns about capacity, your father's vulnerability and your mother's wishes and the issue with thinking she's spoken to your DB etc plus the very practical lack of local support should something go wrong.

The ward staff probably mean well and want to do what's in the patients interest but sadly they are also under incredible pressure to free up beds and as someone up thread has said going home is usually quicker than securing a hospice bed which can sometimes - not always - impact the ward staffs decision making.

In this situation I wouldn't accept her at home. To the person who said it's a safeguarding issue to refuse access to their own home, no it isn't. It would be a safeguarding issue to allow it due to the other resident in the property as this would likely make them unsafe, and potentially a risk to the carers coming in.

I am so sorry this is happening, it's awful and navigating the system shouldn't be this difficult. I hope you get some resolution today.

Also ask for a best interests meeting and make sure you are present too. Good luck.

The hospital is not "forcing their way into the house". If the person has expressed a wish to go home, and they have capacity, then if the hospital refuse to facilitate that then they are detaining the person against their will - that causes all sorts of legal issues.

The only situation in which that is different is if the person tries to insist that they are discharged to someone else's home e.g. saying "I'll move in with my daughter, she'll take care of me". If they have no legal right to that home, then no-one can force them into that home. I've often seen situations where children who live in their parent's home try to block discharge - if the parent owns the home /is on the lease for the home, then they can't prevent that.

You've said that you think that your relative is being coerced - what evidence do you have for that apart from the fact that they have changed their mind? There are times when pts think that they want to die in a hospice and change their mind - plus there isn't enough hospice space, and priority will be given to those who have particularly difficult symptoms to control, so if your relative is not one of them then , faced with a long wait for hospice bed and the possibility of dying in hospital, the person might change their mind about home.

One solution here might be for the relative who feels that they cannot manage with the person home to move out and stay with family while all this is going on.

That sounds like a really difficult situation and it must be tough deciding which parent to prioritise. I know you think that your parent has been coerced but is it not possible that when faced with the reality of going into a hospice, they decided they actually want to be at home? It’s often one thing to say you would want XYZ to happen, but when in the actual situation, it’s not uncommon for feelings to change and to act differently to what you thought would happen.

If you possibly can, get them into hospice.
I have just watched my darling Dad die of cancer in hospice and it was impossibly hard, but they were amazing and it would have been so much worse to go through at home without the amazing staff and drugs readily available.

I would suggest your relative comes to stay with you so that the dying relative can come home. Then they don't have to worry about being in the same house as carers.

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. He might know that it is not ideal and will put considerable strain on your DM but cannot see another way out.

I think we all have a mental picture of what our final moments will be like & maybe your dad's weren't in a hospital. Mine is in a really posh hospital/ hospice with the family around. I will draw my last shallow breath and the lights will dim as my family drown in their tears.... All story lines neatly tied up, old grudges resolved and my death Christ like signals a new beginning for them. Life is not like this as you know death can be ugly.

My father didn't have a Hollywood death. It was weeks and weeks of him screaming in pain as he waited for nurses and doctors to arrange pain relief and arrive to administer it. Caring for a dying person is nothing like in the movies... My dad's last conversation with me that made any sense was about how undignified it was for me to be wiping his shit off him as best I could because I couldn't lift him to the shower despite our best combined efforts. He was humiliated.

I wish you luck with your conversations at the hospital today. I think you are right to push for adequate care that takes into account the needs of both your dad and your mum. You are right an 80 yo woman cannot care for a bed ridden man so he will need wrap around care if he is to come home.

At this stage, it’s helpful to think that your world narrows to a bed. Does it matter where the bed is as long as loved ones are at the bedside? For the last week my Dad was never alone- my mum or I or both were with him 24/7.

So very sorry to hear this. You must reiterate to the hospital that the remaining parent cannot and will not have the dying parent at home. Hospitals put unfair pressure on family to accept patients so they can clear beds. It’s shameful.

Dying parent may fear that hospice will be a similar experience to hospital. It won’t. Could they be persuaded to be discharged to a hospice while home is “prepared for their arrival”? Once there they may settle more to the idea of staying.

typo

@Tombero i did the same years back. Told hospital ward that house would be empty. And i reported to PALS that the hospital were discharging an end of life patient to an empty house. I also put it in writing. All the talk of 24 hour care evaporated (they know it’s hot and miss and carers often don’t turn up).

I was in your position but an only so everything fell to me. I did not have the emotional capacity to deal with an at home death especially since other parent was very elderly, difficult, and I was the go between sucked emotionally dry by all sides. It will depend a lot on what physical, emotional, and financial capacity your family has to deal with this. I put my dying parent in a care home in the end because I could just not physically or mentally cope with the whole situation on zero sleep, endless medical and social worker intervention who basically did zilch apart from ask dying parent what they wanted, fill out forms and expect cups of tea. Don't forget your well parent will be losing their spouse and you your parent. How will you feel after the death? How will you all look back on it? If you can all pull together it may be possible but if you have flaky family members do what is best within your capacity.

This, has your other parent or you/siblings been clear to dying parent that your other parent doesn't want them at home as it's too much for them?
Maybe if they knew how upsetting it would be and that you and your siblings were highly concerned how difficult it would be for other parent?
Or do they think other parent wants them home?

have you not read the thread? OP is 2 hours away and on her way to support her mum today.

OP for what it’s worth, I had the same situation when my dad was dying of cancer nearly 20 years ago. You’ve had some good advice about how to engage with the hospital, good luck today advocating for your mum and don’t get railroaded,

I am sorry you are dealing with this. Can you ask to speak to the palliative nurses at the hospital when you visit ? I would be asking them the following questions ;

Is there a bed available in the hospice today and would your Father be eligible for it at the moment ? It may be that there isn't a bed or that he doesn't currently fit their criteria for a bed. If your Father goes home and then changes his mind, how long would he have to wait for a hospice bed ?

Do they think your Father's confusion is linked to the disease process or the dying process ? Is there anything that could improve this ? It must be awful having to make such big decisions when confused.

You have been told there will be 24hr care provided, is that correct ? Someone will actually be at the house for 24hrs a day ? How will they manage the manual handling if there is only one carer and your other parent isn't able to help ? I don't know if your parents are in England, but I would also check how long this care will be provided for ? What happens if your Fathers condition plateau's, will the care be removed/changed to lesser provision ?

I would also check with the ward if your Father has been telling them that the family will be able to support him at home. Sometimes the information provided by patients and reality are quite different.

Good luck