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.

Generations back, most people died at home.
And there was far less pain relief.
Families just got on with it.

This idealised image no longer exists. And it was not ‘families’ that got on with it. Generations ago, that care fell to women who, at that time, were not working outside the home. The state cannot have it both ways. Women working FT earning a taxable income all day cannot then look after dying people during their work hours. Tell them they have to work one full shift, then go home to work another and they will need medical care themselves for exhaustion.

Edited to add that others posters have said essentially the same. Dying can be a messy, painful and prolonged process. More hospices designed for the terminally ill is needed.

This.
I think people who haven't been through this don't always understand what it is like. Or they come from families of sisters living close by.

My lovely mother died eight weeks ago. She wanted to die at home. We had one day when I wasn't in the house which I am trying to excise from my memory. It was horrific and included having district nurses fail to turn up. She ended up being readmitted to hospital.

Although this was traumatic for her, in the hospital she had nurses and doctors around to adjust pain relief, administer catheters and reassure me that she was comfortable. And safe. She died there, a few weeks before we expected she would go.

The reality of dying at home is that outside care is patchy. You can have district nurses stuck in traffic jams or just not turning up. Your relative may be in pain and you can't adjust syringe drivers.

You want to deny a dying person comfort in their last moments on earth? How horrible.

Of course people change their mind, hospitals are actual hell (trust me I have spent a lot of time in them, they push you to the brink) most people don't have a huge amount of hospital experience and are woefully naive about how utterly awful it is to feel trapped in one.

I sympathise Op and hope you manage to have a sensible conversation with the hospital.

My grandmother died at home from sepsis while we were waiting for a hospice bed. The pain relief was wholly inadequate - paracetamol with the dr visiting twice a day to give a low dose of morphine. She was screaming in pain for 3 days and 4 nights with me, my parents and my siblings taking it in turns to sit with her. it was agonisingly painful for her to be lifted which meant basic personal care was virtually impossible and she couldn't eat. She eventually died after refusing to drink anything - even icecubes so effectively killed herself as there was no practical pain management.

The only way I would ever go through this again is if there was a very clear of care from the hospital / hospice which was actually stuck to, and enough money to have overnight care from professionals every night and maybe an alternative source of morphine.

It is also horrible for a person to be in agony without adequate pain relief because district nurses haven't turned up. Sufficient pain relief and catheters can be a much greater comfort than looking at the right wallpaper, especially if full time family care isn't available.

The MacMillan or Marie Curie teams, or something like, will be involved, the hospital will put everything in place before discharge. The patient will not be reliant on the District nurse. Adequate medication will be readily available.

Your post moved me to tears. I am sorry to hear about the passing of your dear mother. I do hope that you find comfort in happy memories. Yes, comfortable and safe were my key words for both my parents at the end.

I wish. My experience, and that of many others (as you can see from this thread), is that this is not necessarily the case. I venture to say that it's the exception rather than the rule. It's certainly not to be relied on.

The MacMillan or Marie Curie teams, or something like, will be involved, the hospital will put everything in place before discharge. The patient will not be reliant on the District nurse. Adequate medication will be readily available.

In our area the district nurses are the ones who provide this, not the Macmillan nurses or the Marie curie night sitters. Those teams provide different services and not generally, medication administration, they rely on the District nurses to provide that.

I have helped nurse a dying relative at home. 5 years later and all of us who helped are still borderline traumatised from it. With the best will in the world, and a team of willing family volunteers, it was a nightmare juggling professional carers and nurses. There were many crises which needed medical call outs in the night. There were many times when carers were late, or couldn't come, and we (non medical) relatives had to try to do our best. I came home after the funeral, and made it crystal clear to my immediate family that if I get near to dying, I want to be in a hospice and drugged up to the eyeballs. On no account do I want to cause all that difficulty to the people I love the most.
It is never as simple as the hospital says. They want their bed back OP!

These are charity based so depends on donations, although they can be called upon they are unlikely to be present until the final 3/4 days. Then it will be night time, not day time as they are spread thinly.

Generations back, most people died at home.
And there was far less pain relief.
Families just got on with it.

they had to get on with it, and you want people to suffer like that again? Not every slips away peacefully, it’s noisy and disturbing

Yes but that is your choice.This is his!

Being blunt doctors used to be able to hasten the end of life for a terminally ill patient when they judged that to be in everyone's best interests. Sadly Dr Shipman put paid to that.

What people think is best is really neither here nor there.It is a legal matter.

I'm afraid this just isn't always the case, as many of the stories here indicate. Adequate medication is not always readily available, and many discharges are rushed.

It is also horrible for a person to be in agony without adequate pain relief because district nurses haven't turned up.

My family had gripes about district nurses but TBH they were better with pain relief and getting it than some wards.

My family are scared by poor care on some geriatric wards where they left my Dad in pain screaming for hours or forget time and again to give prescribed pain relief before dealing with ulcer's leaving my family devastated and desperately trying to sort situation. Some wards were just awful and lacking in basic care.

Hopefully Op parent is on a cancer ward or a good ward where pain relief and general care is good - it's fucking awful but bitter experience has taught my family that sadly not a given

Hospital social worker was really good with DH uncle - his sons and rest of siblings washed hands of him and FIL own health meant he was reluctant to get involved too much - so SW was instrumental in getting him into a home.

You do have be be very firm and very clear - that home set up proposed isn't an option - it will likely need to be assessed to confirm - and hope another option is offered.

Simply not true much of the time, as many of us know from painful personal experience

OP, please request an urgent meeting with the consultant in charge of your parent's care - in my experience (worked as a doctor in both Geriatrics and Palliative Care) this is who you need to talk to. Explain that your parent is having delusions about speaking with deceased family members and you're worried about their ability to make important decisions around their own care. Tell them that until 24 hours ago they were adamant that they did not want to die at home and you're concerned they've been put under undue pressure to change their mind. And explain that your other parent is not in a position to have them at home regardless of the level of care put in place.

Everyone projects there own fears in these situations. It what they want for themselves if they were in that position - you can't do that (I don't want that to happen to me) sort of thing.

Its okay to say the dying need their wishes to trump everything? It sounds in this situation that there will not be adequate care for them at home. An elderly partner who cannot care for them and can't cope with them. Family that cannot provide support 24/7. My grandfather managed to die at home recently but he had my aunties caring for him around the clock with medical support near the end.

In this case, they need to stay where they are or move into a hospice. I would not want my loved in pain waiting for medication if someone didn't turn up.

Do they have to go to Hospice? When my dying parent changed their mind about staying at home, our local Hospice was full. We found a garden room in a Bupa nursing home (which was actually really lovely) and parent died there. The staff were so kind and very knowledgeable about end of life care.

Parent died the day after arriving, almost as if they had held on just to be moved. It is very traumatic moving them though, so it does need to be resolved quickly. Our local Hospice team organised the transfer and liaised with the Ambulance Service and Bupa home.

As above, I know someone who moved into a nursing home for his final 2 days. He had cancer and this was the only way his pain relief could be managed effectively outside a hospital setting. The staff were very kind to him and he had visitors all round the clock as he said his final goodbyes.

@Whyismycatanasshat following with interest as an ex hospice worker…true 24 hr care for an extended period at home in the uk is actually rare ,because most people at the end of life need 2 carers at a time for moving and handling ( but fab if that is available in your area) and if the other resident of the house is against the return home probably even rarer. Often hospice at home services are there in addition to family members to eg. give the family member a chance to sleep. So I would really make 100% sure if what the hospital says is available, is actually the case!

Not in my experience. There was a palpable reluctance to give any effective pain relief until the very last minute. It wasn’t a pleasant few weeks I can assure you.

The system isn't set up to provide the kind of round-the-clock support people perhaps imagine can be provided. Not for everyone, not everywhere.

Those of us who have been through this in recent months are generally saying the same thing.