To think in this day and age nobody should have “dehydration” as a cause of death.

[Whiskyinajar]

Devastated and upset.

In January this year my 77yr old auntie was independent, car driving, walked long distances and was healthy.

In February she started feeling tired and started staying in bed lots. She and my Uncle spoke to the doctor who said she was depressed and would feel better if she got out of bed. .

My auntie has never been depressed in her life, nor was she ever someone who just laid in bed. She was in bed as she was exhausted and had weaker muscles.

She was admitted to hospital sho said she had a low sodium level and said this was causing her symptoms. They tried to address this and I have no complaints about their care at this stage. They identified an issue and gave treatment, my auntie went home. However her symptoms continued to get worse and she started to display neurological symptoms, unsteady on her feet, lurching to one side and needing a walking stick. She began to look like an old lady...and by that I mean like her late Mum when she was 94.

Symptoms got worse, she got more and more confused. She’s been in and out of hospital where they have blamed in no particular order...a urine infection, her tablets, the low sodium level and getting older.

In the last month it got so bad that she became more and more confused and sleepy. Eventually my Uncle who is registered blind had to say he couldn’t care for her any longer . She was in and out of hospital and finally went from hospital to a nursing home last week. By this point she didn’t know where she was ..she thought she was home.

By Tuesday they’d phoned my Uncle to say she was on “end of life” care.
They still had no answers as to what was causing all the symptoms.

By Wednesday she deteriorated and died.

The death certificate has been produced today.

She died from “Dehydration” , “old age” and “dementia”.

I am fuming....this woman was still driving in January and whatever has happened has left her dead and no fucker can tell us what has happened to her.

My Uncle is devastated and really upset about the death certificate, He’s contesting the death certificate and the nursing home are now saying they had no hand over so have no access to her previous records.

Can my Uncle insist on a post mortem. ...we just want some answers but it feels like there are none. How does someone go from fully independent with all their faculties to dead in nine months with no answer about why Their health has deteriorated.

If you’ve read all through thank you, I’m aware I’m ranting but I am so upset.

Hamster holder - excellent explanation.

Frumpety - I agree. When LCP was in place where I worked, people were still offered food and drink where I worked. Often by the end of life they don’t want food and drink which can be distressing for relatives but is a normal part the body switching down.

@oldmapie

Did she ever have a CT or MRI scan?

I would say the likelihood she had either of those is zero. OP, I think you should ask for her medical records. What diagnostic tests were performed? What tests were done to identify the cause of her symptoms?

Classic signs of a brain tumour. Depending on where the tumour is pressing it can present as a rapid onset dementia. Did she have a CT or MRI scan?

I don't think post-mortem will give you answers except to describe the dementia organically. I mean, get post-mortem if you want, but I wouldn't have hopes it will answer your questions.

Dehydration is common with elderly, easy for carers to overlook. Especially when someone has dementia, which can manifest suddenly.

It sounds like she had a relatively short period of being unwell before her death which is something to be value.

I'm so sorry for your loss, heartache and the accompanying frustration at not having an explanation.

My Ddad died from a brain tumour last year. He had had it before and it presented in different ways each time he relapsed , but before he died he went from being independent (living on his own, able to get out, socialising etc) but sometimes a bit confused, to unable to talk, eat, drink without a straw, or get up from a chair in a week, so unfortunately in some circumstances people can deteriorate very quickly. We were able to get him an MRI as soon as we noticed even a slight decline in his condition because of his previous history and they picked up that it had recurred.
I hope you find some answers
X

sorry I didn't see someone else had asked re-scans. BovaryX
I suspect she didn't too.
Op I'm sorry for your loss.

Sounds awful.

My mum is currently on the Liverpool care pathway end of life care in hospital. Has had no fluids, food or IV fluids for 3 days. The doctor said yesterday that she might pull through. I thought well she won’t bloody pull through if you’re not giving her any fluids. 🤷‍♀️ They don’t know why she had a seizure and don’t seem to be giving her chance to recover.

So yes, as far as I’m concerned the hospital are starving her/dehydrating her to death.

Your uncle could contact the local coroner's office to ask about a pm and reviewing cause of death

@JacobReesMogadishu that must be awful not knowing what is wrong with her, was she ill prior to the siezure ?

@FlorenceNightshade

I don’t know where you live but the Liverpool Care Pathway is outdated and frankly considered barbaric in most trusts.

Your aunt may have had vascular dementia if dementia is mentioned on death certificate. The decline from that can be shockingly quick. If your uncle isn’t happy he should absolutely take it further and the sooner the better.

Sorry for your loss OP

The doctors spent months telling my father who was in his late 80s that he had vascular dementia, ( one of many diagnosis suggested including psychological ones ). In the end we were 'lucky', and a scan revealed a cause a few weeks before he died. He had a glioblastoma ( brain tumour,). I believe this caused pretty much all of his symptoms which in retrospect had started about 2 years earlier with his balance going a bit and complaints about a weird feeling in his legs All of which the doctors put down to old age and depression. My sister and I thought he had something neurological wrong from quite early on ( partly because his brother had died of a brain tumour about 20 years before ) but we were robbed off by the doctor for suggesting it so accepted vascular dementia as a diagnosis.

As it turns out my dad's sister also died of the same thing 3 years after my dad . She was diagnosed earlier and had better treatment because my cousin, unsurprisingly insisted on the possibility of a brain tumour being investigated.

Old people often get dismissed as having dementia when they may have a very different physical cause for their symptoms.

[quote frumpety]@JacobReesMogadishu that must be awful not knowing what is wrong with her, was she ill prior to the siezure ?[/quote]
She has lymphoma but the doctor was very clear yesterday it’s not that which is killing her. That it’s the seizure. They said if it wasn’t for the seizure she could have fed for months or maybe more. She lived by herself and was still driving, etc, was very fit and active.

Thank you all for your comments and good wishes.

Yes she had an MRI scan and a CT scan.

Nobody mentioned dementia to my Uncle. In fact communication due to COVID restrictions has been woefully poor and I will be contacting the hospital to suggest they find ways that relatives can check on their loved ones. In this day and age of digital communication it must be possible for the next of kin to access something which tells them how their relative is.
My Aunt was in a restricted ward for several weeks with no visitors whatsoever and it was hard to get info out of amy one. She had tests but nobody thought my Uncle might like to know the outcome. Communication was sporadic and contradictory, my Aunt would be re-admitted and nobody seemed to know what had occurred before. Nobody seems to talk to one another any more. ...pass information on etc.

Thank you for the info about rapid onset dementia. My Dad has vascular dementia as well as Alzheimer’s but his is very slow progress....at the moment he’s still allowed to drive although he has to have a medical assessment every year for the DVLA and take a special driving test before they reissue his licence.

So sorry for your loss. My mum has rapid early onset dementia, so her decline since diagnosis has been horrifyingly swift. Was told by go she was at end of life earlier this year, wasn't eating or drinking. She was admitted to hospital (at my insistence) where she had IV fluids, now will take some fluid but mostly nutrition drinks. She's lost awful amount of weight. Quality of life is zero. She's alive, just, but I wish now I hadn't pushed for hospital admission, it would have been kinder to let her go. It's so hard. I hate dementia, the worst disease. I hope you get some answers.

My grandfather had mild dementia. My grandmother fell and broke her wrist and my grandfather went into hospital to offer my grandmother some respite.
Ten weeks later he was dead. They starved him to death. The deterioration was devastating to see, he was a huddled ball of bones the last time I saw him.

Communication was sporadic and contradictory, my Aunt would be re-admitted and nobody seemed to know what had occurred before. Nobody seems to talk to one another any more. ...pass information on etc.

I'm sorry to say this isnt unique to covid. After 6 years of my Ddad having various apts, treatments and hospital stays, I can confirm communication between various depts of the NHS and with patients is woeful. I cant fault any of the staff and the care he got, but the communication system seems to be broken.

Exactly @GETTINGLIKEMYMOTHER

As a doctor once put it, ‘They are not dying because they are not eating and drinking. They are not eating and drinking because they are dying.’

I witnessed the same with my dad.

I'm very sorry for your loss @Whiskyinajar truly. It's heartbreaking for you & her husband. However, with respect, there's a lot of confusion on this thread. The doctor certified the ultimate causes of death. Dehydration was observed at the end but was not what made your aunt terminally ill.

It does sound like rapid-onset dementia, potentially.

It would be worth discussing with the medical team. I am not sure a PM would yield the results you expect.

With both my DF & my grandma I had similar experiences where it wasn't ultimately straight-forward to provide a cause of death.

@HamsterHolder

Just regards the 'barbaric' comments regards being allowed to die of dehydration - please don't think this about refusing someone a drink of water that's asking for it, it's actually quite the opposite.

It's quite common for some patients with dementia to not want to drink and certainly not drink enough to keep them hydrated. Whilst constant encouragement can help some, for others you would need to force feed them. I'm a Paramedic and an inability to hydrate in the community is a very very common reason to be admitted to hospital in the elderly population.

Giving fluids through a cannula in an awake confused patient is often not possible as these patients would typically pull it out. Eventually of course they become unconscious so giving fluids through a cannula is possible however to what end? If there's a known reversible cause i.e. infection then there can be a benefit to treatment in order to give time to the body to recover and regain a quality of life. However if it has occured due to dementia, organ failure (when transplant isn't possible) then there isn't reason to prolong a life that has no quality (i.e. needs to be kept unconscious). Sometimes it isn't possible to be certain 100% of what the cause is but they will obviously rule out causes which can be reversed.

Once an assessment has been made that a patient has no realistic chance of recovery they would be identified as an end of life patient, people can live with this diagnosis for many months or just hours. The diagnosis is not made lightly. Nothing would be done to speed death, all measures will be taken to maintain their comfort and this is done compassionately.

An end of life diagnosis can be beneficial to many patients, it can mean a return home to spend their last days at home with loved ones, instead of in an unfamiliar environment with strangers receiving treatment which may be confusing or have uncomfortable side effects. It can mean treatments that are much more focused on improving comfort.

Excellent post Hamster

She had tests but nobody thought my Uncle might like to know the outcome. Communication was sporadic and contradictory, my Aunt would be re-admitted and nobody seemed to know what had occurred before. Nobody seems to talk to one another any more. ...pass information on etc

Whisky
So neither the results of the CT nor the MRI were discussed with your aunt or uncle? I think the key to determining what has happened is to see your aunt's medical records and the results of those diagnostic tests. The lack of communication is dire.

Bovaryx it seems like a communication break down. Was she never sent home with a discharge summary of her treatment and diagnosis?

You need to ask the hospital for all their records of written and telephone communication that they made with your aunt & uncle. Let us know what they produce.

There are (imho) too many rules about information sharing.
This is what most people prefer, even if it leads to poor medical record sharing.

The PP who said dehydration is a cause of death from end of life Care is flat-out wrong.

It is a normal part of the dying process to stop eating and drinking. Patients are palliated only when they are dying. They are already showing the signs that they are reaching the need of their life. They die because of a pathological process.

To say that palliative care causes death by dehydration is, quite simply, a lie. And an astonishingly cruel one.

I heartily wish they people with no direct experience of providing palliative care would stop spouting nonsense designed to hurt people. There is no other reason to share such gross misinformation.

So sorry for your loss op

My dad passed away 3 weeks ago. The cause of death says metastatic prostate cancer. On Friday he had ordered fish and chips, got a shower and was excited for his dermatology appointment on Monday to treat his leg ulcer. He was found dead on the bathroom floor Monday morning.

We all expected it, but in the end it came so sudden. I was waiting for the coroner to tell me it was a stroke/heartattack/sepsis or even how long he had been on the floor before he was found. But I was told because of his medical history and age, that time of death was the moment a medical professional pronounces life extinct and that he died of cancer. I understand completely how you feel, it's like a million questions have gone unanswered but no one cares because the person who died was old.

@stairway

Bovaryx it seems like a communication break down. Was she never sent home with a discharge summary of her treatment and diagnosis?

Precisely. Why were the results of the tests not discussed with the OP's aunt? Why wasn't she given a copy of the report?