To think something is not quite right about my elderly aunt's way of looking after her brother

[Yashy]

I have an aunt (68 years old) who was living with and looking after her brother ie. my uncle (76 years old). He sadly passed away at home a few days ago.

They are from Mauritius and don't speak English very well.

This aunt has previously expressed her suspicions and conspiracy theories about the NHS eg. Things like they just want to kill old people and if you get kept in, they'll try and kill you.

My uncle doesn't like going to hospital as there is a language barrier and he often gets depressed spending weeks in a ward. My aunt's preference is for him never to go to hospital.

He once had a stroke in the evening and she didn't call the doctors until the next morning. I'm not medical but I always thought something like that needed urgent medical attention.

A couple of weeks ago doctors said his organs were slowly deteriorating. They estimated he had 4 months left to live and said he should receive palliative care at home.

I went to visit her after my uncle died. She was telling me about the events leading up to his death saying that he got very unwell and she sat by his bed holding his hand. Her sister (another aunty of mine) was saying they should phone the paramedics but she said "what are they even going to do?" and "they will just take him to hospital and he doesn't like it" and "it's better he stays home, he is happier here". And then he got worse and worse and basically died. My cousins (her children) were also listening to her tell this account and replied with "You did brilliantly mum, he was lucky to have you with him"..

AIBU to think the whole thing is nuts, she should have called for medical help and maybe he might have lived!?

Often doctors estimates are incorrect and people don't live as long as they suggest or the opposite and they live beyond expectations.
Either way he was at home where he wanted to be, surrounded by family and hopefully having his pain managed well if it was palliative care.
I think most people would choose this way to go rather than risk hospital visit and not getting out again.

But you already said Drs had said he should receive palliative care at home so health professionals had already agreed this was the best thing for him?

At this point, I would probably let it go. Even if you're right that she didn't act as she should have or as medical professionals would have advised, it sounds like it was only a matter of time, and what's done is done. Unless you think she did something intentionally criminal or went against your uncle's wishes, I'd try to move on from this. Personally, I also feel that if death were certain and my pain could be managed just as effectively at home, I'd rather be in my familiar surroundings than anywhere else.

I would also add it sounds like it might've been quite sudden and having him moved and possibly die in an ambulance would be really upsetting and unnecessary for everyone. I really think unless you've been in that position you shouldn't judge. I'm sure your Aunt did what she thought was best at the time.

From what you've said, yes I think you're unreasonable.

The idea that hospitals let old people die, don't do enough to save them etc isn't new or unusual and tbh there's an element of truth to it.

In her situation, with a relative receiving palliative care at home who starts to die, I wouldn't call an ambulance either. In fact most people wouldn't when under palliative care.

Yes stroke is medical emergency but lots of people are unable to recognise one, don't know how to respond correctly. Also I've seen other people who are worried/scared about hospital admissions hesistate about calling for help - actually rhere are loads of posts here every week, asking whether they should call 999. Additionally, when faced with a medical emergency lots of sensible otherwise intelligent and rational people freeze and do nothing.

So, yabu for all of the above.

Ps I know a lot of 68 year olds who'd be quite cross at being described elderly!

If the medical advice was that he should receive palliative care at home then I think your aunt did the right thing. Hospitals are in a terrible state and sending your uncle there would have been a miserable way to go. It would have been a source of comfort to him to be at home holding her hand, instead of alone in a busy and understaffed ward. I'm sure anyone who has spent a few nights or more in hospital recently would agree.

we have to keep the patients wishes at the heart of what we do. If the uncle had previously made a plan and expressed wishes not to go to hospital then that is acceptable so long as he had capacity. You are not being unreasonable because it can be hard for loved ones to accept that care or treatment has been declined.

Sorry for your loss.
Yes a stroke required immediately medical attention.

Once your uncle had a terminal diagnosis and the agreed plan was palliative care at home then most likely there was a DNR in place and all paramedics could gave done was administer pain relief. If your aunt was able to manage his pain at home in line with his wishes then that's entirely reasonable.

I wouldn't consider 68 "elderly". But snyway, My DM had a stoke and I got her to A&E asap (no ambulance available at all, and so I was told to drive her) who were not at all interested because it hadn't in the last couple of hours by the time we arrived. We spend a night of hell sitting in A&E. She would have been better off if I'd put her to bed and taken her in the morning.

It sounds like your aunt she was doing what she thought was best for your uncle, with careful consideration. He wasn't going to make a miraculous recovery if he'd be taken into hospital. His final hours would have been stressful and uncomfortable for him, and your aunt though.

What do you want to achieve from picking at this?

Her to admit she was wrong - isn't going to happen, and would be horribly upsetting for her, everyone else too.

Her to admit she sped up his end through negligence? Again, not going to happen and who would benefit from this? Certainly won't be you!

What would you prefer, that he had various strangers messing and faffing and fiddling and dragged to hospital and left on trolleys in corridors... and then died anyway, probably uncomfortably, somewhere strange.

Leave it alone. No good will come of meddling with this.

The poor man got his wish to die at home. Your aunt respected that at great personal cost to her. She is not a young woman and cared for her brother. That is quite a sacrifice.

Perhaps he would have lived a little longer. But he was saved from the trauma of being ambulanced to hospital, waiting hours, perhaps days for a bed and dying confused and maybe even alone. As was, he died in a place of his choosing surrounded by people, who love him.

Firstly 68 is NOT 'elderly', my DM is 70 in August and still works full time!

If he had been assessed by a GP and deemed palliative then there would have been a discussion around what was in his best interest in the case of him dying, a Respect form would have been completed which most likely said not for admission to hospital. Why would a dying person be better in hospital than at home surrounded by loved ones, have you seen the state of our hospitals - it would have been a far more dignified and peaceful death being at home.

He'd been diagnosed as terminally ill, and was on palliative care pathway at home. Did any of this palliative care actually happen? It could've been during the wait for this, he took a turn for the worse.
It's true to say the paramedics and hospital would not be able to do much. Other than do the palliative care at hospice? He may have been on a DNR.
He passed at home with his loved one, which presumably was what he wanted? In an ideal world he would have had decent pain relief through the palliative care. It's sad, but if they said he had 4 months, it's highly possible for them to pass before that. Sometimes they live longer, sometimes less.
I understand your concern as it seems your aunt and uncle did have a strong phobia of hospitals, which can be alarming. But I don't think there's much more they could've done.

So he got to go out the way he wanted without being taken to a place he did not like to be and you have a problem with that?
Why would you have wanted them to prolong the life of someone who was terminal? You sound very selfish.

68 is not elderly, stop making it sound like that impacts the care she gave.

I agree with PP 68 is not elderly. My partner is 68 and his mother is still alive and my aunt who is 81 still works full time.

She did the right thing. He was very end stage. But being in hospital, he might have clawed back a few days - but what for? Miserable days in hospital?

I’m 68, not elderly. I cared for my DH, whose health was failing. He died as he wanted to - hospitals, unless it’s a specialist end-of-life ward, aren’t the best places to be.

DH died, pain free, with me by his side.

Leave your aunt alone now - she’s grieving.

She sounds eccentric but it seems she cared for him according to her own sincere convictions, and if the family was happy with that while he was alive I don't think any good will come of picking at it now.

Your uncle who was dying wished to die at home. Your aunt honoured that.

Your other aunt was also present and if she felt this was the wrong decision and your uncle was needlessly suffering she could have phoned 999 at any time.

Just out of interest how involved were you in the day to day care of your terminally ill uncle? Did you accompany him when he did go to the hospital? Did you spend days at their home caring for him? Caring for a terminally ill loved-one is emotionally gruelling, physically tiring and often involves making difficult decisions in less than ideal circumstances, as well as having to give up on aspects of one's own life (often including self-care) Unless you were as actively involved in this as your aunt was, you really aren't in a position to criticise the decisions - in line with your uncle's wishes- that she made.

I’m really unsure what you were expecting to happen had the paramedics been called? He could of lived but how long? A week? A month? Possibly they could of given him more effective pain relief if he was distressed.

My colleagues mum died recently and she is feeling really traumatised by the whole thing. The palliative care team were unreachable for many hours, she was in a care home so not unsupported but it was highly distressing for her mum and her.

I think you need to balance up patient wishes/ likely outcomes tbh. There’s little point dragging out a life with lots of medical interventions when someone is dying. Yes some people will want to be in hospital and have them do everything possible which is their choice. Others will prefer to accept the inevitable and slip
off at home. These decisions were made between him and his doctors.

If I was dying and knew it, I would rather be at home than have to go into hospital and be alone most of the time. I hate going into hospital it’s a horrible place to be but I love my bed and home so I know exactly what I would pick

Did he have pain relief? Did she give it to him?

Yes if he’s a stroke he should’ve had immediate medical attention.

It’s a bit late in the day now to question all of this. Unless you think a crime has occurred… seems unlikely.

Sorry for your loss, but I would leave it now, it’ll just cause upset.

68 is certainly not elderly and I don't see what your aunt's age has to do with the caring situation.
My 95 yr old aunt was sent to hospital from her respite nursing home. She lay in an ambulance for 12 hours, unable to communicate with anyone as she'd previously had a stroke. Throughout the time she was in the ambulance we were in the a&e waiting room but couldn't go to her. She then lay in a corridor for days. She required specialist feeding, didn't get it and basically asphyxiated on her food.
Hospital is not necessarily the best place for anyone with a terminal diagnosis.

He was receiving palliative care, why are you talking about how he might have lived? Maybe for a couple more weeks so he could suffer some more, but surely you wouldn't want that for him? He was an adult who made a decision regarding his end of life care (the same decision many people in that position would make) and your aunt respected his wishes. Preserving life, regardless of the quality of life, is not in the best interests of the patient. It sounds like your aunt did a great job looking after him, it must have been very hard for her.