Calling all NHS workers!!

[Nc4post99]

I apologise that this isn’t an aibu.

but I really need some clarity from some ITU workers preferably consultants or anyone who has experience there.

its nearly a year since my dad died in ITU. It was harrowing. A rollercoaster of hope and despair. I’m struggling. This has been made worse by the fact my mother is insistent that they (drs)killed him, and did all in their power to make sure he died. She says they put that line into your arm and after that you’re a goner, apparently they did it to my grandmother too. I’ve told her this is nonsense. But it’s clearly psychologically impacting me as I’m having regular nightmares.

please, is this a thing? Do you have any clue what she’s talking about? I can go into detail with what happened, it’s massively outing but I don’t care, if that helps.

(im On a wait list for grief counselling btw)

Maybe get your dad’s notes and go through them with someone professional and independent eg an ITU consultant in another unit/ a medical negligence lawyer. Someone your mum and you feel you can trust. This will either be reassuring or raise concerns you can then address.

Doctors aren’t saintly saviours of humanity but nor is there generally a systematic plot to end the lives of certain patients. My daughter was ‘killed’ by her medical team but my impression is that it wasn’t planned, it was opportunistic, casual and a kind of Swiss cheese line of actual negligence, misleading, undertreating and avoidance. They didn’t actually want her to die, it was just more convenient for them if she did, so they avoided heroic efforts, undertreated and in the end when the opportunity arose used manipulation to ensure the easier outcome happened. I’m sure many of them justified their actions with it being in her best interests and maybe they were right but the way they did it was inexcusable and left us with the consequences.

If an independent review reassures then you can move onto grief counselling. If it doesn’t you can choose what action to take but either way it is generally best to know rather than to wonder.

Did your dad have a long term illness already OP?
What sort of character/mind frame was your mum in before the loss of her husband?

Patients aren't palliated usually on ITU. They're being actively treated unless all the medical team is in consensus that further intervention is futile and just prolonging death.
If your father was in ITU, he'll have had central lines in, possibly been on haemofiltration for kidney failure, most likely have been ventilated to support his lung failure, often with a tracheotomy in situ. I think it's very highly unlikely that your father was in ITU without any tubes and wires except for a syringe driver dispensing morphine.
Presumably you weren't able to visit if it was 12 months ago and you couldn't see the reality for yourself?
OP have you heard of a charity called ICU steps or critical care support network? They are an enormous support to relatives of those in ITU, have a look on Facebook.

Not a consultant but a registrar - the tube in his arm could be a cannula for intravenous treatment. Multiorgan failure is notoriously difficult to treat especially in the elderly ('was he elderly?) especially if it's kidneys, heart and lung as the kidneys need fluid and intravenous fluids exacerbate heart failure causing fluid build up in the lungs etc. It is such a tricky balance. In ITU they offer haemofiltration so off load excess fluid in the body and give the kidneys a rest so they can try and recover. It can be distressing for families esp when patients are sedated or have breathing tubes. There are 4 main medications which can go in syringe driver (delivered by needle under the skin) - anti anxiety medications, anti secretory medications, anti sickness and pain killers (opiates but other options available for kidney failure patients). The aim is make sure the patient is not suffering - without these medications, IME the suffering is immense and unpleasant for both patient and families.Was your mother present when your father passed away? I've found that when family are present, it helps to come to terms with the death and accept it. It also gives them an opportunity to ask questions. I hope you are both able to access some support

This is basically what my mum thinks happened, it was too time consuming and he was ‘old’ so why bother trying to save him

ive asked her to do a sars request and get his notes for all the trusts he was treated at but it’s too much effort for her

OP, I’ve been thinking about this. If there was any suspicion that the death of your dad was not handled correctly then the coroner would have ordered an inquest at the time the death was registered. Did you have an inquest? If not then I would imagine the coroner was satisfied there was no ‘foul play’. A relative of mine had to have one after dying in hospital after a routine op, but with many Co-morbidities. They will not rubber stamp a death unless they are certain that everything was carried out and fine as it should have been.

I’ve met ITU consultants (worked on ethics paper with them) who think that basically hospitals write you off over 70. I wouldn’t dismiss her feelings on this, though I’m probably unusually mistrustful of medics and I do know that many older people receive great treatment and do well.

I do think she’d find knowing helps. Can she have a debrief with his consultant? Interesting that you’ve had no luck with counselling via the hospital. We discovered later that the hospital counsellors had been directed to remove us from their list.

it may be he had excellent care and there were failures in communication. There may genuinely be some suboptimal care. The notes are the only way to really get an idea of this.

This is pretty much it, he was 70 so not elderly but he wasn’t a fit 70 he was like a 90 years old.

he was on BP meds as his BP was v low, and the 24 hr dialysis. He only had 1 kidney, the other was removed due to cancer, and a stent or a shunt in the other, it was really hard for me to establish what was what as my mother used to revel in it, she was very much the boy who cried wolf, always claiming he was dying for years before, in truth she loved the drama. I think he has some sort of cancer in the urethra of the remaining kidney but at the time of his death he was cancer free but the stent was needed to keep the tube open because it kept collapsing. I don’t know why. He also had copd due to being a life long smoker. He was on a nebuliser at home that no one had shown him how to use.

i remember the consultant saying it was a balance of fluids.

i was heavily pregnant at the time, the ITU allowed us to visit, obviously as they thought it was precarious. They said we could stay the night if we wanted but, one sweetheart advised me to go home and take care of myself. There was a huge car pile up otw back to the hospital in the morning, stuck in traffic for 2 hrs. Never made it back in time. My sibling was there, but my mother and I weren’t.

She’d have to request it but she’s too lazy to do it. Basically.

if it’s not too traumatic for you, and I completely understand if it is, would you be able to tell me what happened. There may be parallels.

there was clear negligence on the run up to his death the months prior, but that included my mother not driving anything.

my mother believes that if they’d allowed him more time his kidney would have recovered he had a nasty infection in it from the stent moving and causing it to be blocked, he had a nephrostemy that was in the wrong place/ moved so didn’t drain the infection and then had a second one but the drainage was minimal so she thinks the negligence was that it was in the wrong place in the first instance And that the day he was admitted to ITU in a different trust, the other trust he was initially admitted to were trying to discharge him to come home

They did a post mortem and inquest I think as it took a long time to get the death certificate and to release the body

I am an anaesthetic registrar currently working in intensive care. It sounds like your dad was very poorly and very frail. Sadly having multiorgan failure means the chance of someone dying is very high and especially when his physiological age sounds so much higher than his physical age due to his existing medical conditions as you say.

A lot of intensive care is actually deciding when not to do things to patients, almost more than actually doing things at times. Decisions are made by the whole team working together and based on vast experience of taking care for critically ill patients. A large proportion of patients sadly won’t leave intensive care and will die, others will never get back to the person they were before they were critically ill.

Sadly intensive care can’t reverse the effects of years of poor health.

I am very sorry for your loss OP.

Do you think your mum needs this focus for her anger & grief? If she gets the notes and has a debrief and her fears are unfounded (which I genuinely hope they are) she won’t have a focus anymore. There are stages of grief and we can become stuck for years with parts of that journey. It is still so soon for you all.

PS, I work in an area where we use syringe drivers a lot (maternity). They are very useful gadgets.

And do you have the result of the inquest/PM?
Were you or your mum involved with it? That may give you some answers.

it might not have been a full inquest I’m not sure what took place 100% I just know it took longer than expected to get the death certificate but they ruled the cause of death multi organ failure

She just wont do it, it’s too much effort. Even though I’ve told her it’s just one email per trust for a sars request and then she can do a no win no fee thing… she won’t organise a debrief it’s too much effort. She was terribly abusive to the staff in the ITU into

Do you think they’d do a debrief with me if I asked so I can know what happened. And if his remaining kidney was just decimated

I'm amazed your dad was even admitted to ITU if he was a really frail 70 year old with COPD, one kidney and presumably some heart failure/cardiac disease on top.

I think you're getting sucked into your mum's drama as she looks to place blame. From what you've said she wasn't engaged in your dad's healthcare, didn't chase appointments or advocate for him, and is now accusing ITU staff of killing him. She either sounds unwell from grief or to be a difficult personality.

On the balance of probabilities why do you think doctors would admit your dad to ITU just to kill him? doesn't that strike you as an odd line of thinking? What would they gain?

Why was she terribly abusive and what did she do/say?

please don’t assume, he didn’t have any cardiac disease. He was admitted because they obviously thought there was a chance he could be saved

I have seen doctors choose patients to go down the end life pathway prematurely imo. They do this by withdrawing all food and fluid and medication from a patient that can’t feed themselves. I don’t always agree with it as a nurse but it’s not my decision. If he died in icu this doesn’t seem the case though.

Well she went on at one assuming him of raping the nhs system with the salary he was on for one

They did this the day before and they kept on saying ‘there is no evidence for withholding food and drink’ but it felt like a boris Johnson level of an answer but prior to that he was having food, drink, ice creams etc.

i gave him some juice and he took it too quickly and went down the wrong way, ive often wondered if I made things worse, him aspirating the fluid and it going to his lungs and kick starting his decline

Are you sure you can't do the dsar on her behalf? Our hospital is a simple form. PALS are also good for initiating a review and answering questions.

Does your mum maybe have a guilty conscience and thats why shes blaming everyone else?

This is absolute nonsense.