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!?

I don’t think keeping someone alive at all costs regardless of their prognosis, quality of life and wishes is a positive thing. It sounds like your aunt followed her brother’s wishes as best she could and allowed him to end his life with a loved one by his side in a familiar place. I’m sure he’d have loved to get well and live another 10 or 20 years in decent health but that was never an option. Given the option of dying now at home with his sister or dying a little while later in a hospital or care home then seems based on what you’ve said in your OP he’d have picked the former.

I'm sorry for the loss of your uncle.

Living a few weeks longer when you are bed-bound with organ failure isn't necessarily the best outcome.

Stroke is a medical emergency, yes, but you're generally thinking of saving a person's life and preserving their functions as much as possible. For a person on a palliative/end of life care pathway, the focus is on comfort and dignity, so a stroke would often be managed at home. The outcome is not going to be different as a patient like your uncle would not be able to engage in rehab.

It sounds like your uncle had the kind of death he wanted and your aunt cared for him in the best way she could. I would try to focus on that instead.

In an ideal world, she should have called the GP and perhaps district nurses could have been in and out to help make sure he was comfortable but ultimately if he wasn't in pain and this is what he wanted, then I don't see any issues. The reality is that if she'd called the paramedics, he may well have died on a trolley in a hospital corridor! But it sounds as though he was were he wanted to be snd had someone to care for him till his last moments.

68 is not elderly.

With all due respect, he may have lived for what? Long enough to die in hospital? To continue to be in pain?
He had organ failure and palliative care was deemed appropriate by medical professionals.

It's really awful waiting for someone to die, you don't want them to go obviously, but seeing them slowly dying, laying in bed, with no life in them is really hard, terribly so. It's much better for them to be at home, peaceful, surrounded by those they love than being just another patient on a ward, alone.

Have you ever looked after anyone in palliative care? It is different to regular healthcare. You are making sure they are comfortable and as pain-free as possible. There will usually be a DNR in place and the patient will have expressed where they wish to be treated. The can be GP/Hospice at Home involvement if there is time to set that up, but it is not always possible.

It sounds like your Aunt helped your Uncle to die in the way that he chose, at home with her for company. A dignified death, not waiting for paramedics, or hooked into machines in a strange place, full of noise and strangers, or dying on a trolley in a corridor. Please give your Aunt the support she now needs. She has lost her brother. Being with someone when they die is a privilege but also quite traumatic. She needs your empathy and sympathy, not criticism or suspicion.

I don't understand what you think the hospital would have done for someone under palliative care that was any different to what your aunt did?

Your aunt did the right thing. He was on palliative care so hospital wouldn’t have done anything plus if your uncle doesn’t like hospitals it makes sense that your aunt let him pass peacefully at home.

He had an estimated 4 months left to live which would have probably been a slow and painful death. Instead he died peacefully at home where he wanted to be with his family around him. It sounds like your aunt absolutely did the best thing for him. As someone who works in A&E I wish more people took their relatives wishes into consideration in this kind of situation when thinking about phoning an ambulance, it awful for people to end up
dying on a trolley in A&E or on ward alone a few days later.

Was the palliative care actually arranged and put in place? Or did he die without adequate pain relief etc?

We have medicalised death because we don’t know what to do. It used to be very common for old and sick people to die at home or in nursing homes. In fact it’s the opposite. When people die, the more calm and less traumatic it is, the better and that normally means where they’re most comfortable. Of course they may need access to pain relief, possibly morphine.

In this case I would move on. He wasn’t well and was slowly dying. He died at home surrounded by his own things and his sister. That’s what I would take out of it.

He wouldn’t have lived longer. Hospitals don’t even give you pain relief when they know you’re going to die. Best being at home if that’s what he wanted.

Just because we can keep someone alive for
longer doesn’t necessarily mean that we should, it’s not always in the persons best interests or what the person wants.

Ideally your uncle would have had hospice care. Which prioritise quality and comfort. Anyone can refuse medical treatment at any point. If he had a terminal diagnosis, wanted to pass at home then she followed his wishes.

Hospital is not the place to die unless there is no other option, is a belief held by a lot of people.

Did he receive palliative care, though? The OP doesn’t make it clear. If not, I’d call it neglect, but it’s too late now, so I’d just let it go.

Palliative care is surprisingly limited. My MIL recently passed away on palliative care and the amount of input she received was minimal - oxygen and sedation was all she was given at the end.

I’d imagine she was right and he’d have preferred to die peacefully at home. At end of life who wants to be carted around in an ambulance and dumped into an unfamiliar hospital ward.

You are right that a stroke should receive immediate attention, but given some family friends just left it several days (with no excuses such as little English or belief in conspiracy theories) I don’t think I’d hold that against her either.

I think the two things you need to realise are - it’s really tough being a carer and at the end of life life is about quality not quantity - I think it’s safe to say your uncle was happier to die at home rather than linger on for two weeks in Hospt.

If he had gone to hospital they would probably have extended his life a few days or weeks but not the quality of life. My elderly mother had a stroke and went to hospital and they sent her home after 10 hours in A n E. The carers called an ambulance when she had another one but she had signed a DNR and we refused to let them take her to hospital. Instead she died 6 days later at home quietly with her family around her with no medical interventions. The palliative care team were wonderful. I think we are forgetting how to let people go.

It sounds like they were in touch with the NHS and the OP doesn’t mention her uncle being in pain, so I’d assume they were in the system. There isn’t much in the way of palliative care other than pain control and home help with hygiene if you are lucky / need it.

She made a call based on prioritising her understanding of his wishes over prolonging his life at all costs.

Agree with PP. What could the paramedics or Doctors do? They'd bring him in, he speaks little English you said so presumably couldn't necessarily understand everything that was going on. He'd have life prolonged surrounded by strange sounds, in a medical environment with strangers by his bedside, and for what? Best case, to be discharged to die a few weeks later. Worst case he passes anyway in the hospital potentially alone.
Terminal illnesses are horrible and it sounds like your aunty did her best to make him comfortable in his last hours

In the olden days ( and pre Shipman ) some (?) gp’s would give adequate meds so that the person would slip away peacefully at home ,it’s only in recent decades that we have entered this phase of trying to keep elderly people alive infinitum without regards to their wishes of where they want to be cared for.someone who is end of life will die and it’s quality of end of life not quantity that’s important.

I agree with other posters that these days we seem to focus on prolonging life no matter what the quality of life. I think your aunt did her best according to her own moral values.

Her judgement sounds off re the stroke.

I agree with what your aunt did. He was palliative- he was going to die. It’s not like it was reversible. If he’s gone into hospital what would have been gained? Another few days or weeks but being in a hospital ward (or a&e trolley) surrounded by strangers. No thanks, I think it’s much kinder to die in your own bed, with people you love around you, in a place you know. Quality over
quantity.